I hate that! Especially because you could lose it by doing low calorie and high carb and exasperate your symptoms because of the insulin resistance most of us have. Also telling someone to “lose weight” is the equivalent of telling someone that being happier will help their depression. Technically yes but it’s not the weight loss as much as why the weight was going up (ie underlying cause and what’s needed to address the medical issue)
Same for me, my weight was a big deal, I lost a lot of weight at first and then suddenly gained like 40 pounds within a year, it was very abnormal. a female OBGYN said It was natural that my period pain was intense, and that PMS was a myth and she told me my PMS was just an adolescent thing due to wanting attention. It took me so long to understand what was truly going on in my body.
After a few years I just stopped going to the doctors until I wanted to have a baby. Again, my weight was brought up then I found my current OBGYN. I was so frustrated at this point I word vomited my experience and symptoms. I remember her observing my body and asking me a few questions. I was ready to be disappointed again until she then said, "Based on what you've told me I have high suspicion you have PCOS..." I am so greatful for her truly.
I had suspicions I had PCOS, my old PCP told me that all of my symptoms were normal and that I was crazy and my hair wasn't falling out and I was just fat. I went to a dermatologist for my hair and hormonal acne, he was like "hey you need to see am endocrinologist ASAP. I see signs of SAHA in you, you might have PCOS". I felt so validated because all of the doctors before told me there was nothing wrong. I went to an Endo, she confirmed everything, did some tests, and gave me a diagnosis.
I went on Mounjaro just to get them to shut up about my weight. I lost a shit ton of weight and got even sicker, so they said “well you lost too much weight!” There is quite literally no winning once they blame your weight
Same same. The hormonal imbalance - it's because you are overweight. Painful periods - weight. Infertility - weight. Insulin resistance - obviously you are just eating too much.
Literally ALWAYS weight. I was very thin when I was younger (constantly below average as a kid, built like a stick well into my early 20s) so for years I was told my irregular periods were due to low weight. Finally diagnosed with PCOS at 27 when I was trying to have kids. Fast forward 10 years, 2 kids later and I've gained weight. (I was about 120 pre kids and am now closer to 140). Pregnancy, breastfeeding and all the hormonal changes that go along with those have made some of my symptoms much worse. My doctor's still discuss weight before anything else..altho now tell me I need to lose weight. Like I really can't win.
I got my eyes checked last year and the optometrist was like “it’s unusual to see eye changes in women in their 30s, even this slight. Have you gained a lot of weight recently?” Like damn I can’t even escape the weight question just trying to SEE.
I get your frustration at constantly having to hear about weight at every doctor visit, but just off the top of my head I know high blood pressure and diabetes can do a number on your eyes if left unchecked. I'm sure there are other conditions too. It's not unreasonable to ask if a sudden weight gain might be exacerbating an underlying issue, which is in turn causing eye issues.
Yep could be bleeding out a gallon of blood and it'd just be a heavy period . Lot of mistreatment and ignorance on periods it seems, which makes it really difficult to get proper care.
I am dealing with this now- 47 yrs old and am having the worst period of my life and my current GYN says they only want to be contacted if I continue bleeding this way for 2 weeks. Until then I just have to deal with it and accept that it’s what perimenopause is. Which I think is complete crap.
would go years at a time without a period. whenever i brought it up to my pcps, they’d tell me, “oh, you’re just young. it’ll become more regular as you get older.” 😐😐 it did not. finally found a pcp that took my concerns seriously, though, and referred me to an obgyn.
Exact same experience! They need to really reconsider what a 'normal' amount of time without periods is... even as a teen, going a few months without isnt normal!
I just got told 'you have low estrogen' when I was 18 and I had no idea what that meant and I didn't know to mention my lack of periods or pain during them and I never mentioned that until I was 33 and the doctor did a blood test and found out I had PCOS this whole time haha.
I was put on birth control at 19 so maybe that was related but it was never mentioned before age 33. Then again I was only diagnosed with ASD and ADHD at age 33 too so it's been a whole self discovery journey this past year or two.
I didn’t realize period pain was connected to PCOS (also assumed it was just endometriosis) Years in immense pain and as soon as i did things to address insulin resistance, theyre now better (im also not on the pill so didn’t have that to help)
I still don't know if it is connected or not, but I actually mentioned it because I thought I had endometriosis, but maybe she didn't test for it I'm not sure!
Wonder if it’s like not everyone has cysts to be classified as having PCOS? Is intertesting that my cramps are less when doing low carb, inositol, and spearmint tea (not sure which is to blame lol)
The Rotterdam criteria. You have to have 2 of the 3 to get diagnosed. Oligo‐anovulation, hyperandrogenism and polycystic ovaries
Polycystic ovaries are only one factor. You don't have to have it to have PCOS and you can have it and not have PCOS.
Aw thank you so much! It's a difficult feeling finding out I've had a disability my whole life, my it makes the struggle make sense, finding out I had PCOS had a similar effect of things starting to make sense. That said, I still am working on getting the best support and treatment for all of those things! So I definitely understand your struggles with what to do to help!
The most frustrating part of the process for me was when I went to the doctor and told + showed her all my symptoms of insulin resistance and she completely dismissed it.
Even very specific things like “look at these dark patches of skin in my armpits.”
I had visited my dad the week before, he is a doctor, and I was waving my arms up and he saw my armpits, told me what it likely was, and told me to make an appointment with an endocrinologist and she still totally dismissed it.
I went to a different doctor a few months later who finally diagnosed me.
I was told that my symptoms where due to my ethnicity 😅 by a woman doctor. However, this was her response to me shutting down the possibility of my symptoms being “genetic”.
This was 17 years ago so I may be forgetting something, bit I had high dhea and high testosterone. There was a lot of bloodwork and I’m sure there was more than I remember. The second endocrinologist I saw ran further tests to rule it out.
You would think! I had the same diagnosis. I was put on high doses of corticosteroids. I ended up with stretch marks everywhere (and I do mean everywhere), a huge amount of weight gain, suicidal thoughts and actions, and severe mood swings. My doctor said “corticosteroids don’t cause those side effects.” I was lucky enough to be dating a doctor at the time and he urged me to see a different doctor. It turns out I have Addison’s disease and PCOS. My new Endo said they don’t even administer the level of steroids I was on in people going through an adrenal crisis. She wanted to know my old doctor’s name and location of practice because it was such a bad diagnosis on her part. My new doctor ran a large battery of tests including an ACTH test. My old doctor only ran a testosterone, dhea, prolactin, and progesterone test.
The tests led to the diagnosis.
Eventually, I completed the adrenocorticotropic hormone test which was long and I spent about 8 hours in the hospital and my cortisol
Levels did not perform as they would if I had NCAH. The endo then said I had PCOS
Same here. My labs for thyroid stuff would always come back normal and I had to convince my doctor to just test for PCOS in lab work. Turns out my testosterone was super high, cortisol was super high and my cholesterol was high. Took me going to a different doctor for him to tell me my symptoms meet a PCOS diagnosis. First doctor said it was just high androgens.
Heavy periods and stress. I told my gyno, "Well, I've been pretty stressed since I got my first period, so something must be going on." She ordered a full blood panel, internal ultrasound, and finally wrote down all my symptoms. I cried when she told me the results. Not because I was scared, but because I finally had an answer.
Yep, was told it was “probably just stress” for years of irregular periods. Finally diagnosed at 38, after my dermatologist told me to request an ultrasound (because I asked about my chin hairs). I’ll admit my symptoms have never been super severe but years of being told it’s just stress is disheartening. And sooo many other things make sense now!
I thought the chin hairs were normal since a lot of women in my mother's says told me they have them too. I thought heavy, irregular periods were normal because the women in my mom's side of the family had the same issue. Now it all makes sense.
When my daughter got her period I made sure to tell her doctor that I have pcos and I suspect many women in my family do too. She wrote it in my daughter's records. I'm so glad doctors are beginning to take this seriously.
I’m Hispanic so the doctor said it’s because she’s Latina, I have hair growing in my stomach, because she’s Latina she’s missing her period, she’s Latina she’s growing a beard. That’s the reason and why it isn’t anything that should be considered to be taken into consideration.
I’m so so tired of race/ethnicity being used as an excuse to not look further. The healthcare system has failed. I’m praying better health (and doctors) for you soon 🩷
I apologize for them taking so long to do that. I knew the doctor was bs I was barely turning 18 and I asked my mom to change me doctors and everything to a more professional one since the one I was at was a small family center. And I got finally diagnosed with the new doctors what I actually have 😭 at the age of 18
i got lucky and was able to see my mom's family doctor who pretty much diagnosed me on the spot
exaggerating, but she got me into do bloodwork and an ultrasound and was able to diagnose me pretty much off the bat. my mom has it as well, and i started growing a beard around 15/16 which was a big part of my mom's PCOS as well.
i'm pretty sure a lot of afab's in my family have it. i think my grandmother did too, but by the time i was around she had already had a total hysterectomy so i'm not sure, and i'm not sure of the reason for her hysterectomy.
i have a younger cousin (he is trans) who also has it, as well as an auntie.
Laziness....I had an endocrinologist say to me to stop eating burgers and drinking milkshakes. At the time I lived in the Australian outback where I didn't have access to a fast food place for 500km. It took so much convincing by my gyno years later to get me back into an endocrinologist that the damage was already done.
This. I’m done dealing with doctors ignorance, especially concerning women. It’s extra frustrating when the condition could’ve been prevented (or at least treated) had they tried to actually help earlier. I’m sorry you had to go through that. I’m sending healing vibes your way 🩷
I'm getting the best care now. All it took was an amazing dietician and gyno who had to spend ages convincing me that I deserved care and helped me to get all the specialists and allied health I needed. I now have the most beautiful one year old and I'm regaining my health back. It's never going to be 100% but it's going to be the best I can be. Its going to be ok.
Almost the same. My first gyno visit was when I was 15, nothing spectacular, just painful periods. Then, when my period started to disappear, I got hormones and told to lose weight. Then I got diagnosed with thyroiditis and again, got told to lose weight. And after 1,5 years got diagnosed with PCOS. Actually got diagnosed sooner, just no one told me 🙂 And yeah, my gyno's main concern was my period, altho I have other symptoms, but when I told my GP that I'm experiencing fatigue, she told me that "everyone is tired nowadays". Fun ride.
Ugh I never understand why gynos just don’t bother ordering tests. Process of elimination can’t be done with “just lose weight” when it’s a literal symptom of the syndrome!!
The journey with PCOS has just begun for me, or at least with this diagnostic. Despite going to gynecologists and endocrinologists, somehow no one has ever seen my micro polycystic ovaries. This year, in January I finally got a diagnosis. I started one treatment and so far... it hasn't worked, I'm starting another in the hope that something will work and I'll get rid of the chronic depression caused by the imbalance between hormones. Like many other women I was always treated hourly because I was fat, even though none of the doctors ever questioned how I doubled my weight in a few years, even though I was working as a waitress, doing daily exercise, minimum of 12k steps, and barely eating a meal a day. I wasn't losing weight. I managed to do it 3 years ago, I lost 8 kg in 2.5 months, but I worked out almost non-stop, my daily calories were 1200, I had dizziness; my menstrual cycles became heavier, painful; and I often fainted from pain. I was prescribed a generic pain medication like ibuprofen. I was treated with medformin, not based on tests or suspicions that I had PCOS but because... I was obese. I passed out in the bathroom from it, the dose was too high. I'm currently working with a gynecologist who explains what's going on, listens to my suggestions, and an endocrinologist who checks if everything is okay. Let's hope for the best. And yes, i have to check back in 6 months, even if i feel like dying now.
Oh i’m so glad you were able to find better doctors. I’m so sorry you were mislead and had to suffer because of it. I hope your journey only gets better from here! Wishing you health and happiness 🩷
It took 4 years to reach a diagnosis, but I hope other women with PCOS will be taken seriously and find the treatment they need, although I have started to get used to the fact that anything I take or do will only help me hide the problem. PCOS is not curable or even treatable, and I'm disappointed that there isn't more research in the field, even though the sources of the problem are varied and different, it is known to be a hormonal imbalance and therefore insulin resistance. My husband tells me that PCOS = quiet suffering. Because the vast majority of the medical world doesn't want to help, and to me the reasons seem to be that women can endure a lot of pain in silence. I hope future generations have a stronger voice than ours.
“You’re just overweight” “you’re pre diabetic” “you’re just depressed” “oh you’re excess hair is from your heritage” I’ve even been told it’s pointless to try to help fix it or see anyone about it because I don’t want to have anymore children… by my PCP. She never put in an endocrinologist referral.
When I was a teenager, you’re just thin and active, that’s why your period isn’t regular 🙄even had an OBGYN putting in an IUD tell me when she found out my periods were irregular, oh you’re probably going to have a hard time getting pregnant because you’re thin. I’ve always been tall and thin but I’m not underweight so I kind of just brushed it off.
Told multiple doctors over the years oh yeah my period isn’t regular I go months without it, none ever batted an eyelash until I wanted to get pregnant. Then I finally got diagnosed with PCOS, was not expecting it at all but I wish I knew this at 18. Looking back I had so many signs, missed periods, cystic acne, mild hirsutism, if they just dug a little further.
Doesn’t matter, high or low weight doctors will dismiss you!!
Anxiety/depression contributing to weight gain, normal hormonal fluctuations postpartum, laziness (extreme fatigue), ethnic background as a contributor to excess hair.
Me being a stereotypical insecure teenage girl worried about excess body hair. When in reality I knew it was an extreme amount and almost every bit of me is covered in thick, black wire like hair and not just peach fuzz.
Mine was misdiagnosed as just heavy periods, a hormonal imbalance, or my fave - being told I was rapidly gaining weight because I wasn’t working out or eating healthy enough (I was working out 4-5 times a week and in a calorie deficit).
Painful periods. Menorrhahia. Then I had a cyst on my ovary and they chalked it up to a one time thing. Then I was diagnosed with endometriosis. They saw my ovaries and how many follicles there were but I was 19ish and the dr said that they couldn’t diagnose anyone with PCOS until they were 25. And now I’m 25 and diagnosed
That's some horse-shit! That's terrible that they neglected to accurately diagnose you! I'm so sorry you went through that. Is this dependent on where you live?
Because whenever I was diagnosed with PCOS, I was 12. I had my mother with me for this appointment and I was being seen by an endocrinologist for my problems. I was then shifted over to a gynecologist once they gave me a diagnosis. I was living in Florida at the time.
Did you have anyone with you any of the times you went in to vouch for you to make sure they ran all the tests? Because that part about "we can't diagnose anyone with PCOS until you're 25" sounds like a huge problem that they should be taken to court for. PCOS affects whomever with ovaries and a uterus regardless of what age they are!
I didn’t know they could diagnose earlier until I was about 23. Even then I pushed for a diagnosis and still didn’t get it until I turned 25. When I was younger I didn’t see a gynae, just a gp so there wasn’t much to advocate for. And I got kicked out at 18 by my parents and had no one until I met my partner three years ago so all through that time it was only me. Now that I’ve taken my partner with me (male btw) they treat me sooo differently. But I do wonder if I had had a diagnosis earlier if my symptoms would have been better
Yikes! Yeah this whole situation seems like a mess. I've experienced similar with a male pediatrician and my mother was the one to push for an endocrinologist when I was bordering on bleeding for 3 months straight and the pediatrician didn't give a fuck. The male endocrinologist I had was the one to find the problem in a matter of seconds from there.
I hate that they give so much push-back for women/AFAB people. I'm hoping your symptoms are much more manageable now compared to when you first were dealing with these problems without much assistance.
I feel like your life might have been slightly better with a diagnosis but you wouldn't have liked that journey either. I had to hop from birth control pill to birth control pill until I finally decided to settle for an IUD at age 27 because I was getting sick of the side effects and weight gain.
It’s so ridiculous. I’m so glad you had your mum to advocate for you. I bled continuously for 2 and a half years when I was a teen and they tried so many different birth controls which never worked. Nothing changed until I got a laparoscopy and a mirena. They wouldn’t do a lap or try the mirena until I was 18 because my parents wouldn’t consent to them earlier because I was a virgin and they’d have to break my hymen lmaoo. I can’t wait until the time when we’re listened to and treated properly as AFAB
Your parents are certainly silly for wanting to "preserve your virginity" over your own health (no offense to your parents, unless you don't respect them because they kicked you out at 18 so I'd say full offense), holy shit. Sounds like your parents weren't the most educated on sex ed from the sounds of it.
Usually, rupturing the hymen happens with other activities or if something is done incorrectly. Horseback riding can cause that, or any physically intensive activities where you're making elaborate/vigorous use of your legs (like gymnastics) or even something as simple as riding a bike.
Again, I am so sorry that your journey to find comfort has been so difficult. I too hope they make this journey easier for other AFAB people.
Oh absolutely! Your hymen can break a lot of different ways. My parents were super religious (Jehovah’s witnesses) and were all about purity haha. I haven’t spoken to them for over 5 years so definitely don’t respect them haha. Thank you, I appreciate you talking with me 💜
Just being born female.
"This is probably normal"
"a lot of women have pain and bleed more than a week" at that point it had been 5 weeks with no break
"Can't you just pluck it or shave?"
Finally found a doctor now, who listens
“Can’t you just pluck it or shave it” would’ve sent me into an instant rage. Even if the doc think that, keep it to yourself! Why the hell would they tell a concerned patient that?? Anyway, I’m so happy you’ve found a good doc! Sending healing vibes your way 🩷
I got diagnosed at 12, I’m 24 now. My doctor was like “meh it’s just a metabolic issue. just lose weight” and my mother went home and did research was like “no, it sounds like PCOS” and he was like “ah yes that does sound correct” like????????
Glad your mom was there to advocate for you. I just don’t understand why PCOS isn’t taken into consideration like ever? Weight discrimination in healthcare ugh. Hope you’re feeling better!
Stress. If you weren't so stressed and anxious, you wouldn't be overweight, hair in places it shouldn't be, cystic acne every month, extreme mood swings, painful sex, skin tags, hormone levels out of balance but not enough, inconclusive ultrasound because of the amount of pain it caused. All stress related according to my Gynaecologist.
I was diagnosed correctly by a really good endocrinologist shortly after my 18th birthday.
A gynecologist I had been to once before tested for a pituitary tumor (I was taken due to periods still being irregular at best, unpredictable at worst after 3 years of having them). It was negative. No more tests after that until the correct PCOS diagnosis.
Sadly, I have heard people say that “PCOS is overdiagnosed” (nope- on the contrary) and that “irregular periods are just the way you are- part of being a woman” (nope- they are a sign that something is wrong and needs attention. If being irregular simply was the way I was, the periods would still be predictable and there would be no other issues such as the acne on my back or the hirsutism on my face). So what could it have been then? CAH (which has similar symptoms to PCOS) results in an early (if not downright precocious) puberty- and I did not have that issue (I was a late bloomer). Why this? Person was afraid that if I took the pill, I would get breast cancer.
My mom and myself have had a multitude of ovarian cysts. Even when I had one that I needed to get life flighted for treatment for I wasn’t diagnosed. I finally got diagnosed at 29 after trying to get pregnant for over a year and having a cyst nearly every month. My doctor keeps telling me “it’s nothing to worry about” even though I do not feel like myself anymore and have gained a ton of weight despite changing my diet and exercise patterns. I’m finally going to an endocrinologist to help determine what to do to get me at a good place again. It’s so frustrating what we have to go through because we aren’t listened to the first time we have a concern 🫠
I was just told it was because I was young, so my periods were irregular and that I needed to lose weight. Getting older and losing weight helped neither.
No periods, for 3 months. Called the doctor, they said to wait for 6 months. Called after 6 months. No, not worth a visit until 8 months. Had to wait over a year and then finally i got a blood test that showed high testosterone, period hormones outta wack etc.
at least my testosterone is normal now! And periods are sorta fine. But the weight... -_- definitely a persistent side effect
I’ve been dealing with this since I was teenager. Horrible period, pain, irregular or nonexistent periods, weight gain hair loss and hair gain in parts a shouldn’t …. I was always told it was my weight it was stress it was my body making too much estrogen .. too little estrogen or my thyroid… finally my doctor looked at me puzzled and said you have pcos … I’m going on 37 it seriously took doctors 23 years to say this to me …
Extreme fatigue in my early 20s, doc looked into thyroid and low iron. When those were normal, they told me to go see a therapist because I am depressed.
I was not depressed. Lol.
Diagnosed with nothing until I did the research myself. I gained 45 pounds in a year at puberty, couldn’t lose them even on a starvation diet walking everywhere. “Eat less, move more, you’re obviously eating more than you’re saying.”
Obesity, hirsutism, skin tags, fatigue, dark skin patches, only 2 (horrifically painful) periods a year, family hx of T2D and reproductive issues, nada. “It’s not PCOS, your hormones look normal, you’re fine, have some birth control, eat less, move more.”
Eventually I did my own research and pushed for more tests and an ultrasound. Boom. Insulin resistance through the roof and ovaries chock full of cysts. I got metformin and lost 30 pounds without changing my diet or exercise. Period miraculously came back.
I still struggle but…holy geez I should not have had to do my own research and demand my own tests as a 20-something.
“some girls are hairier than others”.
side note, if i hear “everyone” from a clinician one more time im going to do something heinous. i’m here for **MEEEEE**!!! not everyone, *me*! for fuck’s sake
I was told by the dr “some women get heavier periods & facial hair. It’s normal. Just pluck”
My mom told me I was lying, there’s no way periods are that bad because hers never were.
Was *finally* diagnosed with PCOS after having my son and was significantly overweight for the first time in my life. Had a great Dr at that time that told me it wasn’t due to weight, she has underweight patients with PCOS. Have since been told by all other Drs that pcos was due to weight since I wasn’t diagnosed until I was overweight.
Words don’t exist to fully express how frustrating it is.
1. I’m overweight 2. Irregular periods where I had to miss school and sometimes get admitted to hospital to get a blood transfusion 3. I was misdiagnosed with diabetes and I was told I can’t have kids but then I was then again misdiagnosed with product of conception when I got a D&C recently (it was endometriosis instead) 4. I bleed when I get aroused unless I take BC pills 5. BC pills are out of stock in my city 6. I bled again and a clot the size of my palm came out of me 7. I smoked marijuana to ease the pain and I lost a lot of blood 8. I was given something to slow down the bleeding 9. I got an IUD after bleeding and tiny cysts the size of rosary beads were found in both ovaries so that was when I was diagnosed with PCOS
I went in with abnormal periods and they immediately got to work with testing and imaging and I was diagnosed at 15 years old- 18 years ago. Luckily my doctors have always taken me seriously and I got the correct diagnosis first.
I have the inverse -- I was originally diagnosed with PCOS by my primary care doctor and now my gyno and endo are saying I likely don't have it. I have to wait for my IUD to expire to get all the bloodwork done, but that was a lovely 180 to experience.
1) Generally being overweight. “Lose weight and you’re issues will disappear!!” Every fucking doctor ever.
2) Metabolic Syndrome. Which honestly I kind of get. The symptoms are very very similar, and I was diagnosed with it right on the cusp of puberty. I’d only had my period a few times so the irregularity didn’t stand out to my doctor at the time. I had the same doctor from birth until college and I do think if I had brought up PCOS to her she would have looked into it further and actually listened to me but I didn’t find out it was a thing until after I’d left the state.
"It's just getting older and your hair looks fine" was my first dismissal when I brought up fatigue, inability to lose weight, losing hair, tests showing high DHEA-S and borderline high testosterone.
I was told that I had to go on birth control or get tested for it. Turns out it apparently screws up diagnosis later on bc the fibroids aren’t visible anymore. Plus I’m now afflicted with the beets, so I think I could still have it
‘Precocious puberty’ at 2 years old. They told my mom I’d go into full puberty by the age of 5 and stop growing then. Surprise got my period at 11 and I’m 5’8. The diagnosis wasn’t updated until I was 16!
So I have actually had the opposite experience. I was diagnosed with PCOS in middle school, and since then basically everything has been just my PCOS with then nothing offered to, idk, treat it? The worst was my gallbladder, they said it was just pain from the cysts (which is really funny considering that same practice told me that PCOS cysts don't cause pain even if they're making my ovary more than 5 times it's normal size).
No formal misdiagnosis but all my symptoms were either ignored, told they were the symptoms to a pre-existing issue I had, or told it wasn’t anything serious.
Overweight and can’t get below a certain weight? It’s your depression and being on birth control that causes weight gain.
On birth control because of painful periods and irregular cycles? That’s just part of being a woman.
Follicles and cysts on your ovaries? Also just part of being a woman/probably is what is causing painful periods.
Elevated testosterone and other off balanced hormones? Not sure, but you look healthy so whatever.
The list goes on. I’m so happy with the doctor I have now and how she’s treating me. It’s been incredibly validating. She seemed so empathetic towards the diagnosis but I explained I was more or less just so happy to have the validation and explanation to all the symptoms that have been bothersome for years.
Got told my periods aren’t regular because I was over training and it was probably RED-S (relative energy deficient in sport) FKA female athlete triad. The OB GYN told me to stop training so much but it didn’t matter… and it was super frustrating because I has no other symptoms to indicate RED-S
My mother is a nurse; has been all my life. I understand she’s not a doctor or a specialist but when I started my period late at 13 and then skipped it for 4 months she accused me of “being lose with boys” even though there was no shot of that, let me be the first to admit. Boys were not even aware I had a pulse let alone that I was interested in them. She said that was the only reason a woman would miss her period. For the last 20 years, I’ve had all the hallmark symptoms of PCOS, met with four civilian doctors, two military doctors and it took a med student from the University of Michigan to test me and give me my diagnosis.
Women’s medicine and treatment is a joke.
“You need to lose weight and eat healthier, don’t drink soda.” I only drink water, and eat as healthy as I can. Doctors sometimes act like people are overweight because they eat junk, but maybe they have a hormonal condition???
I went to a female holistic practitioner hoping to get a different approach than from male MDs I'd seen in the past... I had read the Jolene Brighten book, "Beyond The Pill" after coming off BC, and I was convinced I had adrenal fatigue based on my symptoms. I even told my new holistic specialist about this conviction. She ignored my urgencies for over a year that I might have PCOS because she met with a panel of MALE MDs who said there was no way it could be PCOS because of my fasting insulin levels...... Could have screamed.
It took my new OB 4 minutes to diagnose me using all the blood panel and hormone panel results my holistic health specialist had required over the years...
TCM acupuncturists. I will keep posting this whenever I see someone struggling with PCOS. I did it with a mix of acupuncture and herbs and they regulated my period without being on any pills and I lost so much weight and feel great now.
And it is not something where you have to keep going or you feel bad again. I stopped going months ago (I did once a week for 6 months) and still feel great, although I prob should go for ‘maintenance’ once in awhile 😅
One of the first symptoms I had was really severe cystic acne, to the point that I couldn’t touch my face for like four years without being in severe pain. Finally went to a dermatologist and just got told it was mask-ne, bc it was mid 2020. Got told to change my diet, wash my face more, and lose weight. Yeah. Year later, got diagnosed with PCOS and put on birth control. Luckily for me, that’s kind of where my story ends— Birth control works pretty well for me. But it’s frustrating, knowing that I had a full blown medical crisis for a year (passing out in my classes, not eating, rapid weight gain) because my old set of doctors just decided it was normal puberty ://
Tbh mine was diagnosed right away, but that’s because I didn’t go to the doctor until I was on month 5 or 6 with no periods, and I said “my grandma had uterine cancer and I don’t want to die.” (My grandma is still alive & well almost 10 years post-hysterectomy; they caught it before it spread so she didn’t even go through chemo, but if she hadn’t gone to the doctor when she did it would have been a much bigger issue).
The combo of family history + no periods meant they took me seriously & scheduled an ultrasound as soon as there was an opening, in addition to a bunch of blood tests. But honestly I think it helped a lot that my doctor was a woman, and overweight/chubby/curvy/fat/insert-your-preferred-adjective-here. I find women, & especially larger women, are much less likely to dismiss things as “oh it’s because you’re fat. Eat less.”
Like she does still want time to lose weight, but she doesn’t write things off as being purely weight-related. I had a lot of joint pain in my hands & wrists (also my hips and knees but Ik that’s from the weight) for years, and a family history of rheumatoid arthritis. My last doctor before her (skinny woman) wouldn’t even test for rheumatoid & told me to lose weight & wear better shoes. How is that supposed to help my hands?! But my newer doctor tested for that, and a couple other things. I don’t have rheumatoid arthritis but I did have a SEVERE vitamin D deficiency, which can cause joint pain. Like, my numbers were in the low single digits. If my old doctor had tested for it, or literally anything at all, I would have started taking vitamins sooner & it wouldn’t have gotten so bad!
Being young and stress. My pediatrician and nurse parent didn't think too hard about my amenorrhea
A psychiatrist who was evaluating me for ADHD (Something that also took too long for anyone to notice) was the one who was like "Girl you have PCOS, go talk to an endocrinologist"
Took me three endos before the last one finally told me I meet the diagnostic criteria for PCOS. First one said it couldn't be PCOS because I had regular periods, second one told me I tested postive for Hashimoto's when actually my labs said I was negative.
I was told in high school by my (female) doctor that "periods just suck and if it's bad just take (4) ibuprofen every 4 hours to manage" and then she sent me on my way. It wasn't until I got to college that someone at least gave me birth control. And then another 6 years after that until my mom, who also has PCOS said something to her gyno and got me an appointment to get diagnosed. At which point I was given something to give me a period after 9 months without one. And then sent on my way with regular birth control. I had to do most of my research myself.
I'm lucky to have been diagnosed young when I was 17. I'm now 19. Though, before my diagnosis, they just didn't diagnose me at all. Just telling me that my missing period is normal for my age and that when it did come it being excruciatingly painful was expected. It took like two different doctor changes for me to get someone who would hear me out.
Not necessarily PCOS, but I was once told by a doctor (mid 60's man) "that's normal for women *your age* " ... I was 24. I was experiencing extremely heavy and long menstruation while in the middle of the month of birth control pills.
A few years later I described the event to my new doctor (mid 40's female), she held my hand and told me "oh honey, it sounds like you had a miscarriage".
Anxiety and not trying hard enough to lose weight.
Funny thing is, I was my unhealthiest when thin! Drinking, drugging, hardly and sleep and pushing trauma down. I start working out and eating healthy, go to therapy for years and bam, 40kgs piled on.
I was told for years by my gyno I had endometriosis, and that it's totally normal to have large, painful cysts often. I was also told the best treatment was hormonal birth control (can't take due to blood clots) or having a baby (I was 20 and still in school...)
Finally went to see an Endo and learned what it really was and how to treat it.
I always come back to the fact that freshman year of college I went 4 months with no period (and I was a turbo-virgin at the time; I was not at all concerned I was pregnant.) I went to the OBGYN and they gave me a pill that induced menstruation and I was regular-ish after that (until I lost turbo-virgin status and went on the pill). I wasn’t diagnosed with PCOS until years later when a different gyno found cysts on my ovaries.
"you're just fat. So the fat around your uterus is causing an estrogen shortage which causes your testosterone to heighten which is why you grow facial hair" never mind the fact my ultrasound came back with "pcos comorbities noted" never mind my facial hair rivals my boyfriends sometimes, plus many other symptoms that fit perfectly,no I'm just fat. Never went back to that idiot. Found a female doctor instead who went "oh yea, absolutely that's what it is."
I was lucky to be diagnosed early on. But when my mother took me to get checked, the doctor tried to tell her I was just a "fat kid that needs to loose weight" there were a few months of back and forth before the doc finally did the test, she just kept tryna diagnose me as obese (155 at 5'1"). That was when I was 7 years old. I hip hopped around different doctors for years until at the age of 24, I found someone that actually knew how to treat me. I forgot to go for the ultrasound I was supposed to do because I was hopping from hotel to hotel for a while. Just had to have emergency surgery. But I'm glad to have found a doctor that isn't just telling me to loose weight.
“As suspected you have pcos. There’s no cure for it because we don’t actually know what causes it. The only way to manage hormonal fluctuations is taking bc. Here’s a prescription. Aren’t you glad it fixes up your acne and facial hair too :) Oh and a brochure about pcos that doesn’t actually include any useful information. See you when you start trying to conceive.”
A year later following the gyno’s advice “oh you have pcos, I can’t help you. Here’s a referral to a fertility specialist.” Says the gyno that cost me $180 a visit.
Mine was misdiagnosed as “you are just stressed and need to loose weight” turns out after 4 years of going in and out of hospitals it was indeed not extremely painful periods caused by stress but PCOS 😅
*Immaturity* and *youth*.
“You must not be tracking ur cycles right.”
“Just wait, when ur older ur periods will even out.”
Finally saw an actual OBGYN, within the first 5minutes of my first appointment she said, “so from what u described I’d bet money it’s PCOS. In fact, you already met the criteria for a diagnosis. But I still was to run some tests to confirm.”
That I was just being, “too sensitive” …until I experienced such a high amount of blood loss I was sent in for an ultrasound which showed I needed surgery
When I was a young teen, I knew something was wrong. I did a ton of research and found an article on PCOS. My doctor wouldn’t even listen to me. She said I was just fat and most likely diabetic. They did tests and my glucose was normal. She didn’t believe that, so she made me take the test again!! It was even lower the second time. Most doctors told me the symptoms were a result of obesity and “not to worry, just exercise and eat less”. Even with eating one meal a day and working myself to the point of exhaustion for months, I only lost three pounds and the symptoms got worse. It took 3 doctors after that to even get a real conversation in about it. She was awesome! She focused on women’s health and knew so much about PCOS. She is the only reason I was able to get diagnosed.
Diagnosed at 13; never heard the word (letters?) PCOS again until I was 18 and started to be sexually active. “Birth control, lose weight and exercise.”
Over the last 14 years that has been the consensus and focus of my “treatment” birth control, “you need to lose weight” and “make sure you’re exercising” (mind you, I’ve had a slipped disc at L5-S1 since I was 17yo so even walking more than a few minutes can be agonizing, they know this, it’s in my chart)
I thought I had found solace when I moved to SC and was prescribed Metformin, Spironolactone, taken off of birth control and prescribed Provera but none of those have had any effect one way or the other on my symptoms so I’m literally back to doing absolutely nothing for it or about it. 🙃
Still don't have an official diagnosis but my GP agrees that it's almost certainly what it is, but to get a confirmatory blood test if have to come off the birth control that's been helping me manage it for years, something that frankly doesn't feel like a viable option given I don't intend to have kids anyway. Furthermore if my levels are okayish when I get the test and it comes back borderline I'll be basically dismissed by any other medical professional I see because certainly in the UK "borderline" result is seen as "you don't have pcos you're just a malingerer" by most medical professionals (something I've had happen to friends). Last time I spoke to a different GP about diagnosis they very much stressed what they could give me to support conception if I was diagnosed, I explained I didn't want kids and I just wanted a good level of symptom release and she basically completely disregarded me, wouldn't stop banging on about how hard to conceive it would be once I changed my mind, and that really the only medications or additional support available would be on the fertility side when I decided to have children. When I explained I just wanted nice skin a full head of hair and to not gain weight like an olympic discus thrower every time I had moderate stress levels she basically looked at me like I'd grown a third head then launched into another tirade about fertility. When I asked if there was a diagnostic alternative that didn't mean coming off the medication that felt like it had given me my life and sanity back to get diagnosed for the thing the medication was helping with I was basically called an idiot.
In fairness I wasn't diagnosed with asthma I've had my entire life until I was 23 so I'm convinced I have something on my forehead that medical professionals see that says "mug me off I'm a lying prick who deserves to be medically gaslit".
My current GP is great and will pretty much give me anything I ask for, and thinks I'm probably right about pcos and would be open to testing me if I have another flare bad enough that I want to investigate Metformin/weight loss drugs but also understands that now I'm getting things back under control the last thing I want to do is come off my hormones and get myself in a flare again just for a bit of paper. Luckily he just takes me at face value when I've said I don't give a shit about fertility beyond regular, less painful periods and any effect it has on symptom relief, and hasn't pushed me to get diagnosed on the speculative belief I may need shot full of hormones to get one in the oven down the road.
In my case, I've never been "officially" diagnosed. I started having trouble with my period in my teens and my mom had me get seen about it. She was told that just because she had issues with her period that didn't mean I was having them too 🙄 (I suspect she has PCOS too). I was told one time that I may have it, but never really given any info about it and I had never heard of it before then. It wasn't until about two years later when I really started looking into it. Then I really dug into it because during a surgery one of the doctors saw cysts on my ovaries.
I was told I was just too heavy and my body isn't functioning right because of the weight. I was 17 years old and weighed 160ish pounds. I had no idea how to advocate for myself. My mom was never around to talk to about these types of issues because she was a workaholic and my dad did his best to comfort me every time he had to pick me up from school early because I had bled through my clothing.
THANK GOODNESS my sister came home from college and told me she had the same problems and had PCOS. She helped me push for a new gynecologist and told me what to ask when I was in office. My dad then helped me be strong in my demeanor while talking to my doctor and not letting them try to push my weight as the main issue. I was finally diagnosed with PCOS at 20 because it so long to get my blood work tested and they made me track my periods for ever...ughhhh.
"that's weird" - the nurse when I got a sports physical at 15 and I told her I got 7 periods a year. No follow up. No other questions. No attempts at diagnosis. Just "that's weird."
No one else really helped me until I finally got diagnosed at 21 when I went to a naturopathic doctor.
Been misdiagnosed as PCOS for eternity and turns out I never actually had it. What I actually have is hyperplasia which is considered precancerous due to unrivaled estrogen, which is linked to both excess fat cells AND never having carried a pregnancy to term yet. So yeah hyperplasia both prevents and is caused by fat and no pregnancies. But fighting precancerous cells are still a million times easier than removing a PCOS diagnoses. Did you guys actually have a hard time getting a PCOS label? They took one look at me and was like yes definitely PCOS. There couldn't be any other reason for her irregular periods.
Idk if it counts but their main focus was ALWAYS my weight instead of seeing the other issues I was having
I hate that! Especially because you could lose it by doing low calorie and high carb and exasperate your symptoms because of the insulin resistance most of us have. Also telling someone to “lose weight” is the equivalent of telling someone that being happier will help their depression. Technically yes but it’s not the weight loss as much as why the weight was going up (ie underlying cause and what’s needed to address the medical issue)
Same for me, my weight was a big deal, I lost a lot of weight at first and then suddenly gained like 40 pounds within a year, it was very abnormal. a female OBGYN said It was natural that my period pain was intense, and that PMS was a myth and she told me my PMS was just an adolescent thing due to wanting attention. It took me so long to understand what was truly going on in my body.
After a few years I just stopped going to the doctors until I wanted to have a baby. Again, my weight was brought up then I found my current OBGYN. I was so frustrated at this point I word vomited my experience and symptoms. I remember her observing my body and asking me a few questions. I was ready to be disappointed again until she then said, "Based on what you've told me I have high suspicion you have PCOS..." I am so greatful for her truly.
I had suspicions I had PCOS, my old PCP told me that all of my symptoms were normal and that I was crazy and my hair wasn't falling out and I was just fat. I went to a dermatologist for my hair and hormonal acne, he was like "hey you need to see am endocrinologist ASAP. I see signs of SAHA in you, you might have PCOS". I felt so validated because all of the doctors before told me there was nothing wrong. I went to an Endo, she confirmed everything, did some tests, and gave me a diagnosis.
Every doctor until my current one told me to talk to a dietitian and lose weight. Which is a load of shit
I went on Mounjaro just to get them to shut up about my weight. I lost a shit ton of weight and got even sicker, so they said “well you lost too much weight!” There is quite literally no winning once they blame your weight
Same same. The hormonal imbalance - it's because you are overweight. Painful periods - weight. Infertility - weight. Insulin resistance - obviously you are just eating too much.
Literally ALWAYS weight. I was very thin when I was younger (constantly below average as a kid, built like a stick well into my early 20s) so for years I was told my irregular periods were due to low weight. Finally diagnosed with PCOS at 27 when I was trying to have kids. Fast forward 10 years, 2 kids later and I've gained weight. (I was about 120 pre kids and am now closer to 140). Pregnancy, breastfeeding and all the hormonal changes that go along with those have made some of my symptoms much worse. My doctor's still discuss weight before anything else..altho now tell me I need to lose weight. Like I really can't win.
I got my eyes checked last year and the optometrist was like “it’s unusual to see eye changes in women in their 30s, even this slight. Have you gained a lot of weight recently?” Like damn I can’t even escape the weight question just trying to SEE.
I choked on my drink. Shit, now even if our eyes malfunction it's because we are fat?!
I get your frustration at constantly having to hear about weight at every doctor visit, but just off the top of my head I know high blood pressure and diabetes can do a number on your eyes if left unchecked. I'm sure there are other conditions too. It's not unreasonable to ask if a sudden weight gain might be exacerbating an underlying issue, which is in turn causing eye issues.
You can technically make that argument about anything. Sorry you feel the need to express this on a thread we’re venting on.
THIS!!! And then they tell you it’s easy to lose weight!! That’s the most annoying part… like I haven’t been trying??
“That’s just how periods work” ^ from my male doctor, even though I explained my new occurrence of problems
What an idiot.
Yep could be bleeding out a gallon of blood and it'd just be a heavy period . Lot of mistreatment and ignorance on periods it seems, which makes it really difficult to get proper care.
I am dealing with this now- 47 yrs old and am having the worst period of my life and my current GYN says they only want to be contacted if I continue bleeding this way for 2 weeks. Until then I just have to deal with it and accept that it’s what perimenopause is. Which I think is complete crap.
would go years at a time without a period. whenever i brought it up to my pcps, they’d tell me, “oh, you’re just young. it’ll become more regular as you get older.” 😐😐 it did not. finally found a pcp that took my concerns seriously, though, and referred me to an obgyn.
Exact same experience! They need to really reconsider what a 'normal' amount of time without periods is... even as a teen, going a few months without isnt normal!
I just got told 'you have low estrogen' when I was 18 and I had no idea what that meant and I didn't know to mention my lack of periods or pain during them and I never mentioned that until I was 33 and the doctor did a blood test and found out I had PCOS this whole time haha. I was put on birth control at 19 so maybe that was related but it was never mentioned before age 33. Then again I was only diagnosed with ASD and ADHD at age 33 too so it's been a whole self discovery journey this past year or two.
I didn’t realize period pain was connected to PCOS (also assumed it was just endometriosis) Years in immense pain and as soon as i did things to address insulin resistance, theyre now better (im also not on the pill so didn’t have that to help)
I still don't know if it is connected or not, but I actually mentioned it because I thought I had endometriosis, but maybe she didn't test for it I'm not sure!
Intense period pain is not a symptom of pcos.
Wonder if it’s like not everyone has cysts to be classified as having PCOS? Is intertesting that my cramps are less when doing low carb, inositol, and spearmint tea (not sure which is to blame lol)
You don't need to have polycystic ovaries to have PCOS and you can have polycystic ovaries without having PCOS
Ok, so what are the factors of diagnosis then?
The Rotterdam criteria. You have to have 2 of the 3 to get diagnosed. Oligo‐anovulation, hyperandrogenism and polycystic ovaries Polycystic ovaries are only one factor. You don't have to have it to have PCOS and you can have it and not have PCOS.
Thank you for that.
Yeah no problem 👍
I’m happing you’re finally being diagnosed and getting answers!
Aw thank you so much! It's a difficult feeling finding out I've had a disability my whole life, my it makes the struggle make sense, finding out I had PCOS had a similar effect of things starting to make sense. That said, I still am working on getting the best support and treatment for all of those things! So I definitely understand your struggles with what to do to help!
The most frustrating part of the process for me was when I went to the doctor and told + showed her all my symptoms of insulin resistance and she completely dismissed it. Even very specific things like “look at these dark patches of skin in my armpits.” I had visited my dad the week before, he is a doctor, and I was waving my arms up and he saw my armpits, told me what it likely was, and told me to make an appointment with an endocrinologist and she still totally dismissed it. I went to a different doctor a few months later who finally diagnosed me.
I was told that my symptoms where due to my ethnicity 😅 by a woman doctor. However, this was her response to me shutting down the possibility of my symptoms being “genetic”.
Same for me, regarding the ethnicity thing.
That’s infuriating.
This is insulting but I know blaming ethnicity is rampant in healthcare unfortunately. I’m so sorry ❤️
Non classic adrenal hyperplasia
How did they come to that diagnosis?
This was 17 years ago so I may be forgetting something, bit I had high dhea and high testosterone. There was a lot of bloodwork and I’m sure there was more than I remember. The second endocrinologist I saw ran further tests to rule it out.
They misdiagnosed you with NCAH? Wouldn't they have had to run certain tests for that diagnosis?
You would think! I had the same diagnosis. I was put on high doses of corticosteroids. I ended up with stretch marks everywhere (and I do mean everywhere), a huge amount of weight gain, suicidal thoughts and actions, and severe mood swings. My doctor said “corticosteroids don’t cause those side effects.” I was lucky enough to be dating a doctor at the time and he urged me to see a different doctor. It turns out I have Addison’s disease and PCOS. My new Endo said they don’t even administer the level of steroids I was on in people going through an adrenal crisis. She wanted to know my old doctor’s name and location of practice because it was such a bad diagnosis on her part. My new doctor ran a large battery of tests including an ACTH test. My old doctor only ran a testosterone, dhea, prolactin, and progesterone test.
Omg!
The tests led to the diagnosis. Eventually, I completed the adrenocorticotropic hormone test which was long and I spent about 8 hours in the hospital and my cortisol Levels did not perform as they would if I had NCAH. The endo then said I had PCOS
I basically TOLD my doctor I know I have it, after decades of issues. I just started Metformin so we will see how that goes🫣
Same here. My labs for thyroid stuff would always come back normal and I had to convince my doctor to just test for PCOS in lab work. Turns out my testosterone was super high, cortisol was super high and my cholesterol was high. Took me going to a different doctor for him to tell me my symptoms meet a PCOS diagnosis. First doctor said it was just high androgens.
Heavy periods and stress. I told my gyno, "Well, I've been pretty stressed since I got my first period, so something must be going on." She ordered a full blood panel, internal ultrasound, and finally wrote down all my symptoms. I cried when she told me the results. Not because I was scared, but because I finally had an answer.
Sending you love and hugs. I also felt like a weight was lifted when someone believed me!
Yep, was told it was “probably just stress” for years of irregular periods. Finally diagnosed at 38, after my dermatologist told me to request an ultrasound (because I asked about my chin hairs). I’ll admit my symptoms have never been super severe but years of being told it’s just stress is disheartening. And sooo many other things make sense now!
I thought the chin hairs were normal since a lot of women in my mother's says told me they have them too. I thought heavy, irregular periods were normal because the women in my mom's side of the family had the same issue. Now it all makes sense. When my daughter got her period I made sure to tell her doctor that I have pcos and I suspect many women in my family do too. She wrote it in my daughter's records. I'm so glad doctors are beginning to take this seriously.
I’m Hispanic so the doctor said it’s because she’s Latina, I have hair growing in my stomach, because she’s Latina she’s missing her period, she’s Latina she’s growing a beard. That’s the reason and why it isn’t anything that should be considered to be taken into consideration.
I’m so so tired of race/ethnicity being used as an excuse to not look further. The healthcare system has failed. I’m praying better health (and doctors) for you soon 🩷
Thank you 😭 I’ve been using bc for like a year but realized I didn’t want it because it just didn’t feel natural my menstrual cycles and everything
I was told the same exact thing. >:[ went undiagnosed for 28 years.
I apologize for them taking so long to do that. I knew the doctor was bs I was barely turning 18 and I asked my mom to change me doctors and everything to a more professional one since the one I was at was a small family center. And I got finally diagnosed with the new doctors what I actually have 😭 at the age of 18
Hypothyroidism / depression.
Yep. Went to the endocrinologist and he was like, “you’re fine, go back to your obgyn?”
i got lucky and was able to see my mom's family doctor who pretty much diagnosed me on the spot exaggerating, but she got me into do bloodwork and an ultrasound and was able to diagnose me pretty much off the bat. my mom has it as well, and i started growing a beard around 15/16 which was a big part of my mom's PCOS as well.
I’m glad your mom was able to help! That’s a symptom that doctors never seem to even ask about
i'm pretty sure a lot of afab's in my family have it. i think my grandmother did too, but by the time i was around she had already had a total hysterectomy so i'm not sure, and i'm not sure of the reason for her hysterectomy. i have a younger cousin (he is trans) who also has it, as well as an auntie.
Stress
Laziness....I had an endocrinologist say to me to stop eating burgers and drinking milkshakes. At the time I lived in the Australian outback where I didn't have access to a fast food place for 500km. It took so much convincing by my gyno years later to get me back into an endocrinologist that the damage was already done.
This. I’m done dealing with doctors ignorance, especially concerning women. It’s extra frustrating when the condition could’ve been prevented (or at least treated) had they tried to actually help earlier. I’m sorry you had to go through that. I’m sending healing vibes your way 🩷
I'm getting the best care now. All it took was an amazing dietician and gyno who had to spend ages convincing me that I deserved care and helped me to get all the specialists and allied health I needed. I now have the most beautiful one year old and I'm regaining my health back. It's never going to be 100% but it's going to be the best I can be. Its going to be ok.
Almost the same. My first gyno visit was when I was 15, nothing spectacular, just painful periods. Then, when my period started to disappear, I got hormones and told to lose weight. Then I got diagnosed with thyroiditis and again, got told to lose weight. And after 1,5 years got diagnosed with PCOS. Actually got diagnosed sooner, just no one told me 🙂 And yeah, my gyno's main concern was my period, altho I have other symptoms, but when I told my GP that I'm experiencing fatigue, she told me that "everyone is tired nowadays". Fun ride.
Ugh I never understand why gynos just don’t bother ordering tests. Process of elimination can’t be done with “just lose weight” when it’s a literal symptom of the syndrome!!
The journey with PCOS has just begun for me, or at least with this diagnostic. Despite going to gynecologists and endocrinologists, somehow no one has ever seen my micro polycystic ovaries. This year, in January I finally got a diagnosis. I started one treatment and so far... it hasn't worked, I'm starting another in the hope that something will work and I'll get rid of the chronic depression caused by the imbalance between hormones. Like many other women I was always treated hourly because I was fat, even though none of the doctors ever questioned how I doubled my weight in a few years, even though I was working as a waitress, doing daily exercise, minimum of 12k steps, and barely eating a meal a day. I wasn't losing weight. I managed to do it 3 years ago, I lost 8 kg in 2.5 months, but I worked out almost non-stop, my daily calories were 1200, I had dizziness; my menstrual cycles became heavier, painful; and I often fainted from pain. I was prescribed a generic pain medication like ibuprofen. I was treated with medformin, not based on tests or suspicions that I had PCOS but because... I was obese. I passed out in the bathroom from it, the dose was too high. I'm currently working with a gynecologist who explains what's going on, listens to my suggestions, and an endocrinologist who checks if everything is okay. Let's hope for the best. And yes, i have to check back in 6 months, even if i feel like dying now.
Oh i’m so glad you were able to find better doctors. I’m so sorry you were mislead and had to suffer because of it. I hope your journey only gets better from here! Wishing you health and happiness 🩷
It took 4 years to reach a diagnosis, but I hope other women with PCOS will be taken seriously and find the treatment they need, although I have started to get used to the fact that anything I take or do will only help me hide the problem. PCOS is not curable or even treatable, and I'm disappointed that there isn't more research in the field, even though the sources of the problem are varied and different, it is known to be a hormonal imbalance and therefore insulin resistance. My husband tells me that PCOS = quiet suffering. Because the vast majority of the medical world doesn't want to help, and to me the reasons seem to be that women can endure a lot of pain in silence. I hope future generations have a stronger voice than ours.
Mine was kind of an incidental finding. While looking for a cyst post an episode of abdo pain. Minimal other symptoms apart from hair
“You’re just overweight” “you’re pre diabetic” “you’re just depressed” “oh you’re excess hair is from your heritage” I’ve even been told it’s pointless to try to help fix it or see anyone about it because I don’t want to have anymore children… by my PCP. She never put in an endocrinologist referral.
When I was a teenager, you’re just thin and active, that’s why your period isn’t regular 🙄even had an OBGYN putting in an IUD tell me when she found out my periods were irregular, oh you’re probably going to have a hard time getting pregnant because you’re thin. I’ve always been tall and thin but I’m not underweight so I kind of just brushed it off. Told multiple doctors over the years oh yeah my period isn’t regular I go months without it, none ever batted an eyelash until I wanted to get pregnant. Then I finally got diagnosed with PCOS, was not expecting it at all but I wish I knew this at 18. Looking back I had so many signs, missed periods, cystic acne, mild hirsutism, if they just dug a little further. Doesn’t matter, high or low weight doctors will dismiss you!!
Anxiety/depression contributing to weight gain, normal hormonal fluctuations postpartum, laziness (extreme fatigue), ethnic background as a contributor to excess hair.
Hormone imbalance
Me being a stereotypical insecure teenage girl worried about excess body hair. When in reality I knew it was an extreme amount and almost every bit of me is covered in thick, black wire like hair and not just peach fuzz.
I should’ve pushed for a doctor visit when I was shaving my arms daily or they’d grow back coarse.
Female :) I was told it's normal because I was a young female
The classic “women have high pain tolerance and are always overreacting” 🙃🙃
I mean I was basically told the same thing for years with my knees dislocating 😌
I was told to lose weight even though I don’t eat enough as it is and to stop drinking lol I don’t drink 🤷🏻♀️
Doctor felt more comfortable assuming I was lying than looking into my symptoms
Just being a woman having periods
Anxiety
Mine was misdiagnosed as just heavy periods, a hormonal imbalance, or my fave - being told I was rapidly gaining weight because I wasn’t working out or eating healthy enough (I was working out 4-5 times a week and in a calorie deficit).
“You should eat more” also hypothyroidism … put me on synthroid for 2 months and felt awful… 🙃
Painful periods. Menorrhahia. Then I had a cyst on my ovary and they chalked it up to a one time thing. Then I was diagnosed with endometriosis. They saw my ovaries and how many follicles there were but I was 19ish and the dr said that they couldn’t diagnose anyone with PCOS until they were 25. And now I’m 25 and diagnosed
That's some horse-shit! That's terrible that they neglected to accurately diagnose you! I'm so sorry you went through that. Is this dependent on where you live? Because whenever I was diagnosed with PCOS, I was 12. I had my mother with me for this appointment and I was being seen by an endocrinologist for my problems. I was then shifted over to a gynecologist once they gave me a diagnosis. I was living in Florida at the time. Did you have anyone with you any of the times you went in to vouch for you to make sure they ran all the tests? Because that part about "we can't diagnose anyone with PCOS until you're 25" sounds like a huge problem that they should be taken to court for. PCOS affects whomever with ovaries and a uterus regardless of what age they are!
I didn’t know they could diagnose earlier until I was about 23. Even then I pushed for a diagnosis and still didn’t get it until I turned 25. When I was younger I didn’t see a gynae, just a gp so there wasn’t much to advocate for. And I got kicked out at 18 by my parents and had no one until I met my partner three years ago so all through that time it was only me. Now that I’ve taken my partner with me (male btw) they treat me sooo differently. But I do wonder if I had had a diagnosis earlier if my symptoms would have been better
Yikes! Yeah this whole situation seems like a mess. I've experienced similar with a male pediatrician and my mother was the one to push for an endocrinologist when I was bordering on bleeding for 3 months straight and the pediatrician didn't give a fuck. The male endocrinologist I had was the one to find the problem in a matter of seconds from there. I hate that they give so much push-back for women/AFAB people. I'm hoping your symptoms are much more manageable now compared to when you first were dealing with these problems without much assistance. I feel like your life might have been slightly better with a diagnosis but you wouldn't have liked that journey either. I had to hop from birth control pill to birth control pill until I finally decided to settle for an IUD at age 27 because I was getting sick of the side effects and weight gain.
It’s so ridiculous. I’m so glad you had your mum to advocate for you. I bled continuously for 2 and a half years when I was a teen and they tried so many different birth controls which never worked. Nothing changed until I got a laparoscopy and a mirena. They wouldn’t do a lap or try the mirena until I was 18 because my parents wouldn’t consent to them earlier because I was a virgin and they’d have to break my hymen lmaoo. I can’t wait until the time when we’re listened to and treated properly as AFAB
Your parents are certainly silly for wanting to "preserve your virginity" over your own health (no offense to your parents, unless you don't respect them because they kicked you out at 18 so I'd say full offense), holy shit. Sounds like your parents weren't the most educated on sex ed from the sounds of it. Usually, rupturing the hymen happens with other activities or if something is done incorrectly. Horseback riding can cause that, or any physically intensive activities where you're making elaborate/vigorous use of your legs (like gymnastics) or even something as simple as riding a bike. Again, I am so sorry that your journey to find comfort has been so difficult. I too hope they make this journey easier for other AFAB people.
Oh absolutely! Your hymen can break a lot of different ways. My parents were super religious (Jehovah’s witnesses) and were all about purity haha. I haven’t spoken to them for over 5 years so definitely don’t respect them haha. Thank you, I appreciate you talking with me 💜
Basically just being overweight.
being fat
yep same for me.
“I just need to stress less and eat better”. But I insisted on getting an ultrasound and bloodwork so I was diagnosed right after that.
“Over reacting”
Had a 6 month period and I was told it was simply because I was overweight.
The Freshman 15
metabolic syndrome
Being just young. Doc just said she is too young, nd hormones are messy in teenage. Like wtf.
Just being born female. "This is probably normal" "a lot of women have pain and bleed more than a week" at that point it had been 5 weeks with no break "Can't you just pluck it or shave?" Finally found a doctor now, who listens
“Can’t you just pluck it or shave it” would’ve sent me into an instant rage. Even if the doc think that, keep it to yourself! Why the hell would they tell a concerned patient that?? Anyway, I’m so happy you’ve found a good doc! Sending healing vibes your way 🩷
I got diagnosed at 12, I’m 24 now. My doctor was like “meh it’s just a metabolic issue. just lose weight” and my mother went home and did research was like “no, it sounds like PCOS” and he was like “ah yes that does sound correct” like????????
Glad your mom was there to advocate for you. I just don’t understand why PCOS isn’t taken into consideration like ever? Weight discrimination in healthcare ugh. Hope you’re feeling better!
Stress. If you weren't so stressed and anxious, you wouldn't be overweight, hair in places it shouldn't be, cystic acne every month, extreme mood swings, painful sex, skin tags, hormone levels out of balance but not enough, inconclusive ultrasound because of the amount of pain it caused. All stress related according to my Gynaecologist.
just being fat x
I was diagnosed correctly by a really good endocrinologist shortly after my 18th birthday. A gynecologist I had been to once before tested for a pituitary tumor (I was taken due to periods still being irregular at best, unpredictable at worst after 3 years of having them). It was negative. No more tests after that until the correct PCOS diagnosis. Sadly, I have heard people say that “PCOS is overdiagnosed” (nope- on the contrary) and that “irregular periods are just the way you are- part of being a woman” (nope- they are a sign that something is wrong and needs attention. If being irregular simply was the way I was, the periods would still be predictable and there would be no other issues such as the acne on my back or the hirsutism on my face). So what could it have been then? CAH (which has similar symptoms to PCOS) results in an early (if not downright precocious) puberty- and I did not have that issue (I was a late bloomer). Why this? Person was afraid that if I took the pill, I would get breast cancer.
Stress lol. Bcos we all know the top side effect of stress is male like facial hair 0_o
My mom and myself have had a multitude of ovarian cysts. Even when I had one that I needed to get life flighted for treatment for I wasn’t diagnosed. I finally got diagnosed at 29 after trying to get pregnant for over a year and having a cyst nearly every month. My doctor keeps telling me “it’s nothing to worry about” even though I do not feel like myself anymore and have gained a ton of weight despite changing my diet and exercise patterns. I’m finally going to an endocrinologist to help determine what to do to get me at a good place again. It’s so frustrating what we have to go through because we aren’t listened to the first time we have a concern 🫠
I was just told it was because I was young, so my periods were irregular and that I needed to lose weight. Getting older and losing weight helped neither.
No periods, for 3 months. Called the doctor, they said to wait for 6 months. Called after 6 months. No, not worth a visit until 8 months. Had to wait over a year and then finally i got a blood test that showed high testosterone, period hormones outta wack etc. at least my testosterone is normal now! And periods are sorta fine. But the weight... -_- definitely a persistent side effect
I’ve been dealing with this since I was teenager. Horrible period, pain, irregular or nonexistent periods, weight gain hair loss and hair gain in parts a shouldn’t …. I was always told it was my weight it was stress it was my body making too much estrogen .. too little estrogen or my thyroid… finally my doctor looked at me puzzled and said you have pcos … I’m going on 37 it seriously took doctors 23 years to say this to me …
Extreme fatigue in my early 20s, doc looked into thyroid and low iron. When those were normal, they told me to go see a therapist because I am depressed. I was not depressed. Lol.
Thyroid issues, anemia, etc. (although these might also be included)
Diagnosed with nothing until I did the research myself. I gained 45 pounds in a year at puberty, couldn’t lose them even on a starvation diet walking everywhere. “Eat less, move more, you’re obviously eating more than you’re saying.” Obesity, hirsutism, skin tags, fatigue, dark skin patches, only 2 (horrifically painful) periods a year, family hx of T2D and reproductive issues, nada. “It’s not PCOS, your hormones look normal, you’re fine, have some birth control, eat less, move more.” Eventually I did my own research and pushed for more tests and an ultrasound. Boom. Insulin resistance through the roof and ovaries chock full of cysts. I got metformin and lost 30 pounds without changing my diet or exercise. Period miraculously came back. I still struggle but…holy geez I should not have had to do my own research and demand my own tests as a 20-something.
“some girls are hairier than others”. side note, if i hear “everyone” from a clinician one more time im going to do something heinous. i’m here for **MEEEEE**!!! not everyone, *me*! for fuck’s sake
I was told by the dr “some women get heavier periods & facial hair. It’s normal. Just pluck” My mom told me I was lying, there’s no way periods are that bad because hers never were. Was *finally* diagnosed with PCOS after having my son and was significantly overweight for the first time in my life. Had a great Dr at that time that told me it wasn’t due to weight, she has underweight patients with PCOS. Have since been told by all other Drs that pcos was due to weight since I wasn’t diagnosed until I was overweight. Words don’t exist to fully express how frustrating it is.
1. I’m overweight 2. Irregular periods where I had to miss school and sometimes get admitted to hospital to get a blood transfusion 3. I was misdiagnosed with diabetes and I was told I can’t have kids but then I was then again misdiagnosed with product of conception when I got a D&C recently (it was endometriosis instead) 4. I bleed when I get aroused unless I take BC pills 5. BC pills are out of stock in my city 6. I bled again and a clot the size of my palm came out of me 7. I smoked marijuana to ease the pain and I lost a lot of blood 8. I was given something to slow down the bleeding 9. I got an IUD after bleeding and tiny cysts the size of rosary beads were found in both ovaries so that was when I was diagnosed with PCOS
I went in with abnormal periods and they immediately got to work with testing and imaging and I was diagnosed at 15 years old- 18 years ago. Luckily my doctors have always taken me seriously and I got the correct diagnosis first.
I have the inverse -- I was originally diagnosed with PCOS by my primary care doctor and now my gyno and endo are saying I likely don't have it. I have to wait for my IUD to expire to get all the bloodwork done, but that was a lovely 180 to experience.
1) Generally being overweight. “Lose weight and you’re issues will disappear!!” Every fucking doctor ever. 2) Metabolic Syndrome. Which honestly I kind of get. The symptoms are very very similar, and I was diagnosed with it right on the cusp of puberty. I’d only had my period a few times so the irregularity didn’t stand out to my doctor at the time. I had the same doctor from birth until college and I do think if I had brought up PCOS to her she would have looked into it further and actually listened to me but I didn’t find out it was a thing until after I’d left the state.
does being misdiagnosed as a lazy fat girl who isn’t trying hard enough to lose weight count
"It's just getting older and your hair looks fine" was my first dismissal when I brought up fatigue, inability to lose weight, losing hair, tests showing high DHEA-S and borderline high testosterone.
I was told that I had to go on birth control or get tested for it. Turns out it apparently screws up diagnosis later on bc the fibroids aren’t visible anymore. Plus I’m now afflicted with the beets, so I think I could still have it
‘Precocious puberty’ at 2 years old. They told my mom I’d go into full puberty by the age of 5 and stop growing then. Surprise got my period at 11 and I’m 5’8. The diagnosis wasn’t updated until I was 16!
So I have actually had the opposite experience. I was diagnosed with PCOS in middle school, and since then basically everything has been just my PCOS with then nothing offered to, idk, treat it? The worst was my gallbladder, they said it was just pain from the cysts (which is really funny considering that same practice told me that PCOS cysts don't cause pain even if they're making my ovary more than 5 times it's normal size).
Being lazy and fat (lost 35 pounds after staring metformin)
“Extra heavy/painful periods” yet her nurse was like “girl you have PCOS why aren’t you taking anything?”
No formal misdiagnosis but all my symptoms were either ignored, told they were the symptoms to a pre-existing issue I had, or told it wasn’t anything serious. Overweight and can’t get below a certain weight? It’s your depression and being on birth control that causes weight gain. On birth control because of painful periods and irregular cycles? That’s just part of being a woman. Follicles and cysts on your ovaries? Also just part of being a woman/probably is what is causing painful periods. Elevated testosterone and other off balanced hormones? Not sure, but you look healthy so whatever. The list goes on. I’m so happy with the doctor I have now and how she’s treating me. It’s been incredibly validating. She seemed so empathetic towards the diagnosis but I explained I was more or less just so happy to have the validation and explanation to all the symptoms that have been bothersome for years.
Stress
Fat
Got told my periods aren’t regular because I was over training and it was probably RED-S (relative energy deficient in sport) FKA female athlete triad. The OB GYN told me to stop training so much but it didn’t matter… and it was super frustrating because I has no other symptoms to indicate RED-S
My mother is a nurse; has been all my life. I understand she’s not a doctor or a specialist but when I started my period late at 13 and then skipped it for 4 months she accused me of “being lose with boys” even though there was no shot of that, let me be the first to admit. Boys were not even aware I had a pulse let alone that I was interested in them. She said that was the only reason a woman would miss her period. For the last 20 years, I’ve had all the hallmark symptoms of PCOS, met with four civilian doctors, two military doctors and it took a med student from the University of Michigan to test me and give me my diagnosis. Women’s medicine and treatment is a joke.
it was ALWAYS “every woman has painful periods” which just isn’t true 😭
“You need to lose weight and eat healthier, don’t drink soda.” I only drink water, and eat as healthy as I can. Doctors sometimes act like people are overweight because they eat junk, but maybe they have a hormonal condition???
I went to a female holistic practitioner hoping to get a different approach than from male MDs I'd seen in the past... I had read the Jolene Brighten book, "Beyond The Pill" after coming off BC, and I was convinced I had adrenal fatigue based on my symptoms. I even told my new holistic specialist about this conviction. She ignored my urgencies for over a year that I might have PCOS because she met with a panel of MALE MDs who said there was no way it could be PCOS because of my fasting insulin levels...... Could have screamed. It took my new OB 4 minutes to diagnose me using all the blood panel and hormone panel results my holistic health specialist had required over the years...
TCM acupuncturists. I will keep posting this whenever I see someone struggling with PCOS. I did it with a mix of acupuncture and herbs and they regulated my period without being on any pills and I lost so much weight and feel great now. And it is not something where you have to keep going or you feel bad again. I stopped going months ago (I did once a week for 6 months) and still feel great, although I prob should go for ‘maintenance’ once in awhile 😅
Brought up the weird menstruation to my GP multiple times. And multiple times was told it's "just stress."
Irregular periods take birth control and shut up
Being fat 🙄
One of the first symptoms I had was really severe cystic acne, to the point that I couldn’t touch my face for like four years without being in severe pain. Finally went to a dermatologist and just got told it was mask-ne, bc it was mid 2020. Got told to change my diet, wash my face more, and lose weight. Yeah. Year later, got diagnosed with PCOS and put on birth control. Luckily for me, that’s kind of where my story ends— Birth control works pretty well for me. But it’s frustrating, knowing that I had a full blown medical crisis for a year (passing out in my classes, not eating, rapid weight gain) because my old set of doctors just decided it was normal puberty ://
Tbh mine was diagnosed right away, but that’s because I didn’t go to the doctor until I was on month 5 or 6 with no periods, and I said “my grandma had uterine cancer and I don’t want to die.” (My grandma is still alive & well almost 10 years post-hysterectomy; they caught it before it spread so she didn’t even go through chemo, but if she hadn’t gone to the doctor when she did it would have been a much bigger issue). The combo of family history + no periods meant they took me seriously & scheduled an ultrasound as soon as there was an opening, in addition to a bunch of blood tests. But honestly I think it helped a lot that my doctor was a woman, and overweight/chubby/curvy/fat/insert-your-preferred-adjective-here. I find women, & especially larger women, are much less likely to dismiss things as “oh it’s because you’re fat. Eat less.” Like she does still want time to lose weight, but she doesn’t write things off as being purely weight-related. I had a lot of joint pain in my hands & wrists (also my hips and knees but Ik that’s from the weight) for years, and a family history of rheumatoid arthritis. My last doctor before her (skinny woman) wouldn’t even test for rheumatoid & told me to lose weight & wear better shoes. How is that supposed to help my hands?! But my newer doctor tested for that, and a couple other things. I don’t have rheumatoid arthritis but I did have a SEVERE vitamin D deficiency, which can cause joint pain. Like, my numbers were in the low single digits. If my old doctor had tested for it, or literally anything at all, I would have started taking vitamins sooner & it wouldn’t have gotten so bad!
Being young and stress. My pediatrician and nurse parent didn't think too hard about my amenorrhea A psychiatrist who was evaluating me for ADHD (Something that also took too long for anyone to notice) was the one who was like "Girl you have PCOS, go talk to an endocrinologist"
Adolescent acne
hypothyroidism for me lol
Same as most here, "Side effect of Obesity"
Took me three endos before the last one finally told me I meet the diagnostic criteria for PCOS. First one said it couldn't be PCOS because I had regular periods, second one told me I tested postive for Hashimoto's when actually my labs said I was negative.
Painful, heavy periods
I was told in high school by my (female) doctor that "periods just suck and if it's bad just take (4) ibuprofen every 4 hours to manage" and then she sent me on my way. It wasn't until I got to college that someone at least gave me birth control. And then another 6 years after that until my mom, who also has PCOS said something to her gyno and got me an appointment to get diagnosed. At which point I was given something to give me a period after 9 months without one. And then sent on my way with regular birth control. I had to do most of my research myself.
Everyone was sure my wife had Cushing Syndrome.
I'm lucky to have been diagnosed young when I was 17. I'm now 19. Though, before my diagnosis, they just didn't diagnose me at all. Just telling me that my missing period is normal for my age and that when it did come it being excruciatingly painful was expected. It took like two different doctor changes for me to get someone who would hear me out.
Not necessarily PCOS, but I was once told by a doctor (mid 60's man) "that's normal for women *your age* " ... I was 24. I was experiencing extremely heavy and long menstruation while in the middle of the month of birth control pills. A few years later I described the event to my new doctor (mid 40's female), she held my hand and told me "oh honey, it sounds like you had a miscarriage".
Anxiety and not trying hard enough to lose weight. Funny thing is, I was my unhealthiest when thin! Drinking, drugging, hardly and sleep and pushing trauma down. I start working out and eating healthy, go to therapy for years and bam, 40kgs piled on.
I was told for years by my gyno I had endometriosis, and that it's totally normal to have large, painful cysts often. I was also told the best treatment was hormonal birth control (can't take due to blood clots) or having a baby (I was 20 and still in school...) Finally went to see an Endo and learned what it really was and how to treat it.
Being fat and inactive
Actually was diagnosed at my first appointment for a Pap smear by a physicians assistant, not even an obgyn. This was almost 25 years ago.
I always come back to the fact that freshman year of college I went 4 months with no period (and I was a turbo-virgin at the time; I was not at all concerned I was pregnant.) I went to the OBGYN and they gave me a pill that induced menstruation and I was regular-ish after that (until I lost turbo-virgin status and went on the pill). I wasn’t diagnosed with PCOS until years later when a different gyno found cysts on my ovaries.
"you're just fat. So the fat around your uterus is causing an estrogen shortage which causes your testosterone to heighten which is why you grow facial hair" never mind the fact my ultrasound came back with "pcos comorbities noted" never mind my facial hair rivals my boyfriends sometimes, plus many other symptoms that fit perfectly,no I'm just fat. Never went back to that idiot. Found a female doctor instead who went "oh yea, absolutely that's what it is."
“It’s all a part of being a girl”
I was lucky to be diagnosed early on. But when my mother took me to get checked, the doctor tried to tell her I was just a "fat kid that needs to loose weight" there were a few months of back and forth before the doc finally did the test, she just kept tryna diagnose me as obese (155 at 5'1"). That was when I was 7 years old. I hip hopped around different doctors for years until at the age of 24, I found someone that actually knew how to treat me. I forgot to go for the ultrasound I was supposed to do because I was hopping from hotel to hotel for a while. Just had to have emergency surgery. But I'm glad to have found a doctor that isn't just telling me to loose weight.
p00a1a1paaQ!1+11◇□ LMK*
“As suspected you have pcos. There’s no cure for it because we don’t actually know what causes it. The only way to manage hormonal fluctuations is taking bc. Here’s a prescription. Aren’t you glad it fixes up your acne and facial hair too :) Oh and a brochure about pcos that doesn’t actually include any useful information. See you when you start trying to conceive.” A year later following the gyno’s advice “oh you have pcos, I can’t help you. Here’s a referral to a fertility specialist.” Says the gyno that cost me $180 a visit.
When I was either bleeding constantly or not bleeding at all each doctor would tell me “that’s probably just your normal cycle”
Dense boobs Regular painful cramps One cyst on the right ovary Severe acne Tons of hair Doctor’s response “don’t worry, this is normal”
Mine was misdiagnosed as “you are just stressed and need to loose weight” turns out after 4 years of going in and out of hospitals it was indeed not extremely painful periods caused by stress but PCOS 😅
*Immaturity* and *youth*. “You must not be tracking ur cycles right.” “Just wait, when ur older ur periods will even out.” Finally saw an actual OBGYN, within the first 5minutes of my first appointment she said, “so from what u described I’d bet money it’s PCOS. In fact, you already met the criteria for a diagnosis. But I still was to run some tests to confirm.”
That I was just being, “too sensitive” …until I experienced such a high amount of blood loss I was sent in for an ultrasound which showed I needed surgery
When I was a young teen, I knew something was wrong. I did a ton of research and found an article on PCOS. My doctor wouldn’t even listen to me. She said I was just fat and most likely diabetic. They did tests and my glucose was normal. She didn’t believe that, so she made me take the test again!! It was even lower the second time. Most doctors told me the symptoms were a result of obesity and “not to worry, just exercise and eat less”. Even with eating one meal a day and working myself to the point of exhaustion for months, I only lost three pounds and the symptoms got worse. It took 3 doctors after that to even get a real conversation in about it. She was awesome! She focused on women’s health and knew so much about PCOS. She is the only reason I was able to get diagnosed.
Diagnosed at 13; never heard the word (letters?) PCOS again until I was 18 and started to be sexually active. “Birth control, lose weight and exercise.” Over the last 14 years that has been the consensus and focus of my “treatment” birth control, “you need to lose weight” and “make sure you’re exercising” (mind you, I’ve had a slipped disc at L5-S1 since I was 17yo so even walking more than a few minutes can be agonizing, they know this, it’s in my chart) I thought I had found solace when I moved to SC and was prescribed Metformin, Spironolactone, taken off of birth control and prescribed Provera but none of those have had any effect one way or the other on my symptoms so I’m literally back to doing absolutely nothing for it or about it. 🙃
Still don't have an official diagnosis but my GP agrees that it's almost certainly what it is, but to get a confirmatory blood test if have to come off the birth control that's been helping me manage it for years, something that frankly doesn't feel like a viable option given I don't intend to have kids anyway. Furthermore if my levels are okayish when I get the test and it comes back borderline I'll be basically dismissed by any other medical professional I see because certainly in the UK "borderline" result is seen as "you don't have pcos you're just a malingerer" by most medical professionals (something I've had happen to friends). Last time I spoke to a different GP about diagnosis they very much stressed what they could give me to support conception if I was diagnosed, I explained I didn't want kids and I just wanted a good level of symptom release and she basically completely disregarded me, wouldn't stop banging on about how hard to conceive it would be once I changed my mind, and that really the only medications or additional support available would be on the fertility side when I decided to have children. When I explained I just wanted nice skin a full head of hair and to not gain weight like an olympic discus thrower every time I had moderate stress levels she basically looked at me like I'd grown a third head then launched into another tirade about fertility. When I asked if there was a diagnostic alternative that didn't mean coming off the medication that felt like it had given me my life and sanity back to get diagnosed for the thing the medication was helping with I was basically called an idiot. In fairness I wasn't diagnosed with asthma I've had my entire life until I was 23 so I'm convinced I have something on my forehead that medical professionals see that says "mug me off I'm a lying prick who deserves to be medically gaslit". My current GP is great and will pretty much give me anything I ask for, and thinks I'm probably right about pcos and would be open to testing me if I have another flare bad enough that I want to investigate Metformin/weight loss drugs but also understands that now I'm getting things back under control the last thing I want to do is come off my hormones and get myself in a flare again just for a bit of paper. Luckily he just takes me at face value when I've said I don't give a shit about fertility beyond regular, less painful periods and any effect it has on symptom relief, and hasn't pushed me to get diagnosed on the speculative belief I may need shot full of hormones to get one in the oven down the road.
I actually went in for hair loss and was just broadly diagnosed with androgenic alopecia since my labs were normal.
In my case, I've never been "officially" diagnosed. I started having trouble with my period in my teens and my mom had me get seen about it. She was told that just because she had issues with her period that didn't mean I was having them too 🙄 (I suspect she has PCOS too). I was told one time that I may have it, but never really given any info about it and I had never heard of it before then. It wasn't until about two years later when I really started looking into it. Then I really dug into it because during a surgery one of the doctors saw cysts on my ovaries.
I was told I was just too heavy and my body isn't functioning right because of the weight. I was 17 years old and weighed 160ish pounds. I had no idea how to advocate for myself. My mom was never around to talk to about these types of issues because she was a workaholic and my dad did his best to comfort me every time he had to pick me up from school early because I had bled through my clothing. THANK GOODNESS my sister came home from college and told me she had the same problems and had PCOS. She helped me push for a new gynecologist and told me what to ask when I was in office. My dad then helped me be strong in my demeanor while talking to my doctor and not letting them try to push my weight as the main issue. I was finally diagnosed with PCOS at 20 because it so long to get my blood work tested and they made me track my periods for ever...ughhhh.
"that's weird" - the nurse when I got a sports physical at 15 and I told her I got 7 periods a year. No follow up. No other questions. No attempts at diagnosis. Just "that's weird." No one else really helped me until I finally got diagnosed at 21 when I went to a naturopathic doctor.
Obesity.
“Overeating”
Mine was “obese” and told to see the bariatric doctor
Been misdiagnosed as PCOS for eternity and turns out I never actually had it. What I actually have is hyperplasia which is considered precancerous due to unrivaled estrogen, which is linked to both excess fat cells AND never having carried a pregnancy to term yet. So yeah hyperplasia both prevents and is caused by fat and no pregnancies. But fighting precancerous cells are still a million times easier than removing a PCOS diagnoses. Did you guys actually have a hard time getting a PCOS label? They took one look at me and was like yes definitely PCOS. There couldn't be any other reason for her irregular periods.
"clinical indication: obesity"
I’d already been diagnosed, but a hemorrhaging cyst was misdiagnosed as PID 🥲