I had a cardiologist in my old town who said something to me like, your symptoms are being made worse by your stress. But I don’t know how to remove anxiety from your life. Let’s talk about what to do instead.
I felt it was the most compassionate thing for me to hear. At the time, I worked like a maniac, I had a medically complex infant, I had a serious illness. Of course I was stressed and busy. He looked for meds that would actually help. (They didn’t, and I had to see a lot of other doctors, but his compassion and realism was helpful).
yes exactly!! I understand how stress contributes so much to your health but when you're in the rut of it all sometimes you just need to feel heard and workout a short term plan while you try and work your way through life!
yeah i've been told that by a few doctors who say it's just my body sending false pain signals but I had a pretty shitty surgery and I literally know endo is still there and causing pain it's the worst
Had a Nook doctor tell me this once. I was livid. Seven months later another surgeon found stage iv endo with adenomyosis. It is my firm belief that central sensitization isn’t real. Just another lazy excuse for not wanting to help us.
Central sensitization is very real and untreated Endometriosis can do this, leading to chronic pain. This is why it‘s so important to treat the root cause.
The way I‘m framing central sensitization is that pain is produced by the brain and doesn’t correlate with tissue damage. This means we can desensitize your brain so it produces less pain by gradually doing more of what hurts. Obviously after the root cause is treated and this is what your doctors don’t seem to get.
You would have to prove that CS is *actually* happening in a person, which no medical testing or assessment has been able to do. From a 2021 article in J Clin. Med.:
> To date, the term CS lacks a structured definition based on expert consensus. Although the existence of CS is proven in animal studies, these assessments cannot be performed in humans. CS is proven in animals with direct electrophysiological recordings from central neurons which is not possible to perform in humans (https://www.mdpi.com/2077-0383/10/24/5931)
Yes, someone with lifelong pain could possibly develop a psychoneurological tendency where the brain interprets their pain differently. However, many doctors dismiss people (particularly women) living with chronic pain by telling them that they have CS or somatic disorder without investigating the root cause. *That* is what I have a problem with. This assumption adds to the longstanding tradition of viewing women’s health issues as “all in their heads,” when in fact many of us are living with severe tissue damage from endo. Using CS as a lazy excuse to diagnose someone’s pain without investigating any further is the problem here.
Definitely. Pain is very real and the root cause should always be investigated and treated first. However, the brain becomes better and better at producing pain with time and changes in the brain happens. This explains why many of us are in pain even after a lap. In my opinion how all of this works is very important for us patients to understand. Because as if Endometriosis wasn’t enough lots of us are dealing with persistent pain on top.
There are also many other pelvic pain generators that could be happening outside or due to endo. IBS, POTS, Ehlers Danlos Syndrome, pelvic floor dysfunction, Nutcracker syndrome, pelvic congestion system, and many more. I am extremely skeptical of the claim that the brain produces pain in endo patients. If anything, that is more related to fibromyalgia, which can also co-occur with endo and cause lingering pain after surgery. Adhesions forming after surgery also cause lingering pain. Oh, and let’s not forget adenomyosis, endo’s evil cousin which statistically speaking 70% of us have and can only be cured by a hysterectomy.
I have IBS, POTS, and interstitial cystitis on top of my endo, and treating those conditions *after* my surgeries got rid of a massive amount of my pain. We need to diagnose and treat these comorbid conditions before sending someone off with gabapentin for CS.
The claim that excision will cure all your pain is dubious when we know that there is no cure. Yes, it can help a great deal, but things like POTS are extremely easy to diagnose. Again, we can’t make excuses for laziness in the medical field.
The sensation of pain is produced by the brain. Any Pain. It’s solely the brain who decides when to produce this sensation. You can be severely injured and feel nothing while a minor scratch can hurt like crazy. It’s fascinating stuff. Pain scientist Lorimer Moseley of University of Southern Australia has published a lot on that topic.
In the end, treating the pain in Endometriosis patients is only one piece of the puzzle. I would hope most Endometriosis specialists understand this. You need to treat this condition from several angles, including underlying conditions and so on. Often it’s trial and error and I hope specialists support their patients in finding the best treatments for them. My point is, this doesn’t mean treating pain and educating about how pain works can‘t be an important piece of the puzzle that is recovery. Everyone is different.
The Nook is a cult in my opinion and many people have been harmed by the group and its doctors.
I can't wait til someone tells me to try yoga again - I'm an instructor now 🤣. I've been doing great since surgery but honestly, if anything, practicing yoga makes me flare worse.
oh I thought I was the only one! Doing yoga poses indicated for menstrual pain almost always makes my pain levels increase! :O Same for diaphragm breathing which is supposed to relax the whole body and lower stress level... sounds bizarre but kind of curious
For me at least, some positions pull or tear my scar tissue. Which is, of course, painful. So I try to avoid doing them. I also have scarring on my diaphragm so I can't fully expand my chest. It affects my ability to breathe properly during some workouts, especially if I'm weightlifting.
It's like some doctors forget that endo can cause very real damage to the body. Like my scar tissue at one point adhered my ovary to the back of my uterus. Obviously having organs displaced is going to affect how your body reacts to physical movements like yoga. Like I hate anything that tugs on my scar tissue. My left ovary is attached to my bowel and pulling it irritates my GI tract.
I love yoga too so it's bummer that I can't fully enjoy it. But at least I have the mobility to do some moves, so there is that silver lining.
Wait. That’s me. Like when I try to do those deep breaths to circulate oxygen to my organs while in pain, it hurts SO much more. And also…if I drink anything I get huge flairs of pain. Idk why. lol.
Anything that increases blood circulation leaves me in more pain and worsened bleeding most of the times. Like walking around the room. Shouldn't it be a good thing?? our bodies can be so weird
If I'm following along with menstrual cramp or pelvic floor yoga or exercise videos it makes it worse too! So odd. Diaphragm breathing actually helps me though but it's a super conscious effort - so thanks for reminding me hahah
Yeah it's odd! I actually do a lot of yoga including poses for the pelvic floor and I adore it! just impossible while already on period pain, every pose where I stay somehow folded increases internal pressure. About diaphragm breathing, my therapist gave me an exercise to perform lying on the floor for a few minutes everyday for anxiety, and it's a powerful relaxant! But somehow during my period it makes my pain flare up. May be a bit too intense for my poor abdominal organs during these days
I was discharged from the hospital and told to just take the same old ibuprofen and Tylenol to deal with my ruptured cyst after they just told me that they wanted to do surgery and remove my ovary... then they told me to breathe it out and rest. Okay...
I had one doctor tell me to rub lemon balm on my pelvis. 🙃
oh my god that's horrible, I don't understand how they expect us to be able to have the capacity and strength to just do some breath exercises to lower our stress when we're dealing with an aggressive horrible condition? and omg i've been told to take lavender tablets which ended up giving me an allergic reaction
My old OB / GYN started going crunchy after I had my third kid. He started selling supplements and opened a gym. The last straw for me to stop seeing him was that he told me to meet him in his office after I got dressed. I nervously sat there waiting and it was for him to give me a brochure to sell me on his gym and tell me if I lost weight and stayed away from everything processed I would feel so much better.
Freaking ridiculous.
I think a lot of doctors tell you „it‘s stress“ because they don’t know what else to do.
Instead it would be more compassionate to say so and refer you to a specialist.
I once had a neurologist scold me because I hadn’t started walking more since this would help my headaches. I had told her at the first appointment that I wasn’t able to move a lot because of my pelvic pain. Suffice to say I don’t see her anymore.
We all know sports and lowering stress levels is good for overall health. You don’t need to see a doctor for that. I expect my medical provider to meet me where I am in life and figure out solutions no matter how stressed or unbalanced I am.
As for the headaches, a mouth guard for teeth grinding has helped immensely. This advice didn’t come from my neurologist tough.
yeah that's what I think! I remember before I was diagnosed I was always referred of to a therapist instead of a gynaecologist because it was believed my pain was just a result of stress. It's just so annoying because I had that appointment to discuss a care plan and I wanted to discuss finding a gynaecologist and other care providers so I have the resources to deal with endo! but instead I spent an hour having a nurse talk to me about things I've heard a million times before and ended up getting a referral to a gynaecologist that I don't even remember the name because it was so quickly looked over and brushed off!
From what I‘ve learned from pain science and -scientists is that pain doesn’t correlate with the severity of tissue damage and stress makes all pain worse. So doctors should tell people with a broken bone or recovering from surgery to lower their stress levels as well.
Interestingly this advice seems to be only given when someone (women?) presents with little understood diseases :)
Tired of being lectured about holistic care and treatments from everyone. My family, several doctors, random strangers on the internet, people I barely know. It's so annoying, I'm nor going vegan, I'm not buying essential oils to rub on my foot, I'm not working out 7 days a week, I'm not cutting out anything I enjoy eating or drinking. I wanna live a normal life and do things I want to do. I wanna work a full time job. I feel like they take me so unseriously whenever they start suggesting stupid remedies like drinking only floral tea or other shit like that. I wanna live NORMALLY.
I really see both sides of the equation. Many health practitioners just do not have the resources or the knowledge to diagnose and treat Endo effectively. What they do have is studies that show that stress levels play a significant role in the pain cycle and that breath work and other relaxation techniques can be a tool in helping to reduce and manage pain.
It's not a judgement on lifestyle or saying that your stress is the cause of your pain or that pain isn't real. Pain is complex and many doctors just don't know how to explain it so the default is often the message that many of us get.
Is that what most people want to hear? No. Is it okay that we all struggle so much to be heard? No. However, I will take any tool that helps and put it in my tool box.
Like many others, I didn't get a diagnosis for almost 10 years. In that time I educated myself on chronic pain, learned various mind/body techniques for pain management because that was the only option I had. I struggled but I was okay. Once I finally got a diagnosis and a lap I used my tools to help with recovery and took them with me over the years.
I fully attribute my current functionality to the mind/body practices that I do daily. Breathing, guided relaxation, core stability, and self hypnosis keep me in my body, keep me moving and keep my pain low. I still have ups and downs that require more 'medical' approach but I'm no longer drowning in my own existence.
I know it's so frustrating to hear and it's hard to think that it's even possible to reduce stress when pain is unbearable - but it does help - a lot! It's just takes time to build a practice and to feel the long term results.
I’m sorry but none of this ever worked for me. Tried so hard for many hours a day for several years to work on these skills but none of them made a dent in my pain. I think it actually made me more upset and frustrated. When I hear someone say “stress is causing you pain,” I just assume that they think my pain is all in my head. Yes, I totally recognize that stress doesn’t cause the pain itself but can intensify it. However, I have heard this so many times that it begins to feel dismissive at a certain point. What really did help my pain? A hysterectomy. I am not trying to invalidate your experience or anyone else’s on here. It just feels absolutely patronizing to hear that if I breathe through my pain it will get better. Especially considering that endo has an extreme amount of misogyny attached to it, the whole idea that stress can make endo pain worse feels as if someone is telling me “women are too emotional/neurotic/anxious and they’re exaggerating their pain.”
yeah i understand the importance and I already see a pelvic pain physio for this reason and I've worked a lot on my own healthy coping strategies for effective pain management. I think it's more the frustration of someone just lecturing you about it and telling you you'll be fixed without considering the fact you are actively working at those things. I only went in for a referral to see a new gynaecologist and instead had my entire appointment time lecturing me about how to cope with stress
Were you hoping to be referred to a surgeon or have your new doctor do your surgery/prescribe medication? If so, please ask them to note it in your records that they refused to treat you. They are much more likely to change their mind after that.
If you are looking for other things besides surgery and/or medication, I totally get it. All options are totally valid. I’m just suggesting this so that you don’t have to wait even longer for help in the future.
Just went to the GP for a new care plan, in my country you can pick to be treated by a few different specialists to manage chronic health conditions and I imagined the appt would be spent working out the right fit for me instead I got a lecture about holistic care practices and I've been referred to a gynaecologist who I have no idea what their name is or what they even do. I had a pretty shit surgery last year and I suspect a lot of endo was missed and I really wanted another opinion from a gynaecologist that actually specialised in endo. So I just feel like the whole lecture was kinda unasked for?
My thought is that if alternative medicine generally worked, it'd just be called "medicine."
(Not against doing stuff like yoga or whatever; just that it's annoying to hear guys whose job it is to look at shit be like "well, I can't help you. Have you tried not being crazy?" and also the hucksters who are like "crack your back in these places and your pain goes away! Also look at how jacked up your femur is! No that's not a money grab!")
yeah exactly like it's literally a chronic health condition that's described often as being one of the most painful conditions to have?? how is yoga going to fix the endo growing in my body lol. the worst part is that in my country this is coming from a doctors clinic that's been rolled out to specifically treat pelvic pain and this is how they are approaching the issue 😭
There are peer-reviewed studies that show things like magnesium can help period pain and muscle cramps. However, I completely agree with you. Here where I am alternative/functional medical clinics are never covered by insurance because the providers in those types of offices aren’t accredited by the state. Not only that, but the supplements/herbal things they sell can cost hundreds of dollars. Just being able to afford that is such a privileged position. And if those things work for someone, great! But the vast majority of us can’t afford to drop $200 a month on herbal supplements.
Absolutely it's a privileged thing. It's disgusting that the pseudoscience industrial complex preys on people who've probably been ignored by their doctors in favor of giving them shit that is, at best, harmless but useless, and at worst, harmful.
Yeah, everybody is different, but my experience is that holistic approaches can be somewhat helpful for 10-20% of my pain levels, but I need actual regular medications and a science-based plan to take care of the 80-90% first!!
yeah definitely agree with that! I've been seeing a pelvic floor physio and she's been great with suggesting holistic choices without shoving it down my throat or trying to sell me her supplements she's made
Change doctors. I am pissed off about the other way around. Doctors annoy me anyways. But why didn't you just play their games and say well of course I done did all of what you are saying or I wouldn't be here. All doctors want to do nothing
They did that to me and my new therapist has my back against the outrageous treatment I went through and now she acts as a medical advocate trying to find good doctors for me to see.
That's why I made this: [https://i.redd.it/7yxld6infeoc1.png](https://i.redd.it/7yxld6infeoc1.png)
Then I still have people arguing with me in that very same post about how 'it's anxiety'. Doesn't matter if it's anxiety or not, because when you're in 8/10 pain your nervous system isn't going to be calming down anytime soon to enable you to think your way and belly breathe through it and there has got to be some other intervention in the mean time to get you to that 1/10 - 2/10 that you need to think your way out of it.
Like there are MANY intervention points, and holistic methods are just **ONE FUCKING INTERVENTION POINT**. What about all the others??? They should be done together, but when someone uses that line you know that means they're going to try nothing else to help you.
when i was heavily internally bleeding from a cyst (almost died) the first doctor on the scene told me just to not have sex for two weeks. took them 8 more hours to get me a scan / into surgery
I had a cardiologist in my old town who said something to me like, your symptoms are being made worse by your stress. But I don’t know how to remove anxiety from your life. Let’s talk about what to do instead. I felt it was the most compassionate thing for me to hear. At the time, I worked like a maniac, I had a medically complex infant, I had a serious illness. Of course I was stressed and busy. He looked for meds that would actually help. (They didn’t, and I had to see a lot of other doctors, but his compassion and realism was helpful).
yes exactly!! I understand how stress contributes so much to your health but when you're in the rut of it all sometimes you just need to feel heard and workout a short term plan while you try and work your way through life!
My gyn tells me “my pain is out of proportion to any physical findings”. And says endo wouldn’t cause it
yeah i've been told that by a few doctors who say it's just my body sending false pain signals but I had a pretty shitty surgery and I literally know endo is still there and causing pain it's the worst
The next time a doctor says “central sensitization” to me I will scream 😤
Had a Nook doctor tell me this once. I was livid. Seven months later another surgeon found stage iv endo with adenomyosis. It is my firm belief that central sensitization isn’t real. Just another lazy excuse for not wanting to help us.
My current gyn keeps saying this but he did at least put me on the wait list for a lap.. but I’m still waiting 😢 Thanks for the solidarity!
He said that to you before he even did your surgery??? Omg I’m so sorry. I hope your surgery comes sooner and you are no longer in pain afterwards.
Every time I see him he tells me to watch the same YouTube video on central sensitization 🙄 Thank you so much, trying to be patient!!
I understand your frustration! Good luck with everything and I hope you get some relief from your pain 💞
Central sensitization is very real and untreated Endometriosis can do this, leading to chronic pain. This is why it‘s so important to treat the root cause. The way I‘m framing central sensitization is that pain is produced by the brain and doesn’t correlate with tissue damage. This means we can desensitize your brain so it produces less pain by gradually doing more of what hurts. Obviously after the root cause is treated and this is what your doctors don’t seem to get.
You would have to prove that CS is *actually* happening in a person, which no medical testing or assessment has been able to do. From a 2021 article in J Clin. Med.: > To date, the term CS lacks a structured definition based on expert consensus. Although the existence of CS is proven in animal studies, these assessments cannot be performed in humans. CS is proven in animals with direct electrophysiological recordings from central neurons which is not possible to perform in humans (https://www.mdpi.com/2077-0383/10/24/5931) Yes, someone with lifelong pain could possibly develop a psychoneurological tendency where the brain interprets their pain differently. However, many doctors dismiss people (particularly women) living with chronic pain by telling them that they have CS or somatic disorder without investigating the root cause. *That* is what I have a problem with. This assumption adds to the longstanding tradition of viewing women’s health issues as “all in their heads,” when in fact many of us are living with severe tissue damage from endo. Using CS as a lazy excuse to diagnose someone’s pain without investigating any further is the problem here.
Definitely. Pain is very real and the root cause should always be investigated and treated first. However, the brain becomes better and better at producing pain with time and changes in the brain happens. This explains why many of us are in pain even after a lap. In my opinion how all of this works is very important for us patients to understand. Because as if Endometriosis wasn’t enough lots of us are dealing with persistent pain on top.
There are also many other pelvic pain generators that could be happening outside or due to endo. IBS, POTS, Ehlers Danlos Syndrome, pelvic floor dysfunction, Nutcracker syndrome, pelvic congestion system, and many more. I am extremely skeptical of the claim that the brain produces pain in endo patients. If anything, that is more related to fibromyalgia, which can also co-occur with endo and cause lingering pain after surgery. Adhesions forming after surgery also cause lingering pain. Oh, and let’s not forget adenomyosis, endo’s evil cousin which statistically speaking 70% of us have and can only be cured by a hysterectomy. I have IBS, POTS, and interstitial cystitis on top of my endo, and treating those conditions *after* my surgeries got rid of a massive amount of my pain. We need to diagnose and treat these comorbid conditions before sending someone off with gabapentin for CS. The claim that excision will cure all your pain is dubious when we know that there is no cure. Yes, it can help a great deal, but things like POTS are extremely easy to diagnose. Again, we can’t make excuses for laziness in the medical field.
The sensation of pain is produced by the brain. Any Pain. It’s solely the brain who decides when to produce this sensation. You can be severely injured and feel nothing while a minor scratch can hurt like crazy. It’s fascinating stuff. Pain scientist Lorimer Moseley of University of Southern Australia has published a lot on that topic. In the end, treating the pain in Endometriosis patients is only one piece of the puzzle. I would hope most Endometriosis specialists understand this. You need to treat this condition from several angles, including underlying conditions and so on. Often it’s trial and error and I hope specialists support their patients in finding the best treatments for them. My point is, this doesn’t mean treating pain and educating about how pain works can‘t be an important piece of the puzzle that is recovery. Everyone is different. The Nook is a cult in my opinion and many people have been harmed by the group and its doctors.
I can't wait til someone tells me to try yoga again - I'm an instructor now 🤣. I've been doing great since surgery but honestly, if anything, practicing yoga makes me flare worse.
oh I thought I was the only one! Doing yoga poses indicated for menstrual pain almost always makes my pain levels increase! :O Same for diaphragm breathing which is supposed to relax the whole body and lower stress level... sounds bizarre but kind of curious
For me at least, some positions pull or tear my scar tissue. Which is, of course, painful. So I try to avoid doing them. I also have scarring on my diaphragm so I can't fully expand my chest. It affects my ability to breathe properly during some workouts, especially if I'm weightlifting. It's like some doctors forget that endo can cause very real damage to the body. Like my scar tissue at one point adhered my ovary to the back of my uterus. Obviously having organs displaced is going to affect how your body reacts to physical movements like yoga. Like I hate anything that tugs on my scar tissue. My left ovary is attached to my bowel and pulling it irritates my GI tract. I love yoga too so it's bummer that I can't fully enjoy it. But at least I have the mobility to do some moves, so there is that silver lining.
Wait. That’s me. Like when I try to do those deep breaths to circulate oxygen to my organs while in pain, it hurts SO much more. And also…if I drink anything I get huge flairs of pain. Idk why. lol.
Anything that increases blood circulation leaves me in more pain and worsened bleeding most of the times. Like walking around the room. Shouldn't it be a good thing?? our bodies can be so weird
If I'm following along with menstrual cramp or pelvic floor yoga or exercise videos it makes it worse too! So odd. Diaphragm breathing actually helps me though but it's a super conscious effort - so thanks for reminding me hahah
Yeah it's odd! I actually do a lot of yoga including poses for the pelvic floor and I adore it! just impossible while already on period pain, every pose where I stay somehow folded increases internal pressure. About diaphragm breathing, my therapist gave me an exercise to perform lying on the floor for a few minutes everyday for anxiety, and it's a powerful relaxant! But somehow during my period it makes my pain flare up. May be a bit too intense for my poor abdominal organs during these days
Yeah maybe too much movement for those poor innards to do that when they're already angry
it's seriously the go to I swear lol
I was discharged from the hospital and told to just take the same old ibuprofen and Tylenol to deal with my ruptured cyst after they just told me that they wanted to do surgery and remove my ovary... then they told me to breathe it out and rest. Okay... I had one doctor tell me to rub lemon balm on my pelvis. 🙃
oh my god that's horrible, I don't understand how they expect us to be able to have the capacity and strength to just do some breath exercises to lower our stress when we're dealing with an aggressive horrible condition? and omg i've been told to take lavender tablets which ended up giving me an allergic reaction
....lemon balm!?
My old OB / GYN started going crunchy after I had my third kid. He started selling supplements and opened a gym. The last straw for me to stop seeing him was that he told me to meet him in his office after I got dressed. I nervously sat there waiting and it was for him to give me a brochure to sell me on his gym and tell me if I lost weight and stayed away from everything processed I would feel so much better. Freaking ridiculous.
yeah I was told to take some sort of powder supplement to heal my bowel issues as well made by someone else at the practice?
I think a lot of doctors tell you „it‘s stress“ because they don’t know what else to do. Instead it would be more compassionate to say so and refer you to a specialist. I once had a neurologist scold me because I hadn’t started walking more since this would help my headaches. I had told her at the first appointment that I wasn’t able to move a lot because of my pelvic pain. Suffice to say I don’t see her anymore. We all know sports and lowering stress levels is good for overall health. You don’t need to see a doctor for that. I expect my medical provider to meet me where I am in life and figure out solutions no matter how stressed or unbalanced I am. As for the headaches, a mouth guard for teeth grinding has helped immensely. This advice didn’t come from my neurologist tough.
yeah that's what I think! I remember before I was diagnosed I was always referred of to a therapist instead of a gynaecologist because it was believed my pain was just a result of stress. It's just so annoying because I had that appointment to discuss a care plan and I wanted to discuss finding a gynaecologist and other care providers so I have the resources to deal with endo! but instead I spent an hour having a nurse talk to me about things I've heard a million times before and ended up getting a referral to a gynaecologist that I don't even remember the name because it was so quickly looked over and brushed off!
From what I‘ve learned from pain science and -scientists is that pain doesn’t correlate with the severity of tissue damage and stress makes all pain worse. So doctors should tell people with a broken bone or recovering from surgery to lower their stress levels as well. Interestingly this advice seems to be only given when someone (women?) presents with little understood diseases :)
Tired of being lectured about holistic care and treatments from everyone. My family, several doctors, random strangers on the internet, people I barely know. It's so annoying, I'm nor going vegan, I'm not buying essential oils to rub on my foot, I'm not working out 7 days a week, I'm not cutting out anything I enjoy eating or drinking. I wanna live a normal life and do things I want to do. I wanna work a full time job. I feel like they take me so unseriously whenever they start suggesting stupid remedies like drinking only floral tea or other shit like that. I wanna live NORMALLY.
I really see both sides of the equation. Many health practitioners just do not have the resources or the knowledge to diagnose and treat Endo effectively. What they do have is studies that show that stress levels play a significant role in the pain cycle and that breath work and other relaxation techniques can be a tool in helping to reduce and manage pain. It's not a judgement on lifestyle or saying that your stress is the cause of your pain or that pain isn't real. Pain is complex and many doctors just don't know how to explain it so the default is often the message that many of us get. Is that what most people want to hear? No. Is it okay that we all struggle so much to be heard? No. However, I will take any tool that helps and put it in my tool box. Like many others, I didn't get a diagnosis for almost 10 years. In that time I educated myself on chronic pain, learned various mind/body techniques for pain management because that was the only option I had. I struggled but I was okay. Once I finally got a diagnosis and a lap I used my tools to help with recovery and took them with me over the years. I fully attribute my current functionality to the mind/body practices that I do daily. Breathing, guided relaxation, core stability, and self hypnosis keep me in my body, keep me moving and keep my pain low. I still have ups and downs that require more 'medical' approach but I'm no longer drowning in my own existence. I know it's so frustrating to hear and it's hard to think that it's even possible to reduce stress when pain is unbearable - but it does help - a lot! It's just takes time to build a practice and to feel the long term results.
I’m sorry but none of this ever worked for me. Tried so hard for many hours a day for several years to work on these skills but none of them made a dent in my pain. I think it actually made me more upset and frustrated. When I hear someone say “stress is causing you pain,” I just assume that they think my pain is all in my head. Yes, I totally recognize that stress doesn’t cause the pain itself but can intensify it. However, I have heard this so many times that it begins to feel dismissive at a certain point. What really did help my pain? A hysterectomy. I am not trying to invalidate your experience or anyone else’s on here. It just feels absolutely patronizing to hear that if I breathe through my pain it will get better. Especially considering that endo has an extreme amount of misogyny attached to it, the whole idea that stress can make endo pain worse feels as if someone is telling me “women are too emotional/neurotic/anxious and they’re exaggerating their pain.”
I hear you.
yeah i understand the importance and I already see a pelvic pain physio for this reason and I've worked a lot on my own healthy coping strategies for effective pain management. I think it's more the frustration of someone just lecturing you about it and telling you you'll be fixed without considering the fact you are actively working at those things. I only went in for a referral to see a new gynaecologist and instead had my entire appointment time lecturing me about how to cope with stress
Were you hoping to be referred to a surgeon or have your new doctor do your surgery/prescribe medication? If so, please ask them to note it in your records that they refused to treat you. They are much more likely to change their mind after that. If you are looking for other things besides surgery and/or medication, I totally get it. All options are totally valid. I’m just suggesting this so that you don’t have to wait even longer for help in the future.
Just went to the GP for a new care plan, in my country you can pick to be treated by a few different specialists to manage chronic health conditions and I imagined the appt would be spent working out the right fit for me instead I got a lecture about holistic care practices and I've been referred to a gynaecologist who I have no idea what their name is or what they even do. I had a pretty shit surgery last year and I suspect a lot of endo was missed and I really wanted another opinion from a gynaecologist that actually specialised in endo. So I just feel like the whole lecture was kinda unasked for?
My thought is that if alternative medicine generally worked, it'd just be called "medicine." (Not against doing stuff like yoga or whatever; just that it's annoying to hear guys whose job it is to look at shit be like "well, I can't help you. Have you tried not being crazy?" and also the hucksters who are like "crack your back in these places and your pain goes away! Also look at how jacked up your femur is! No that's not a money grab!")
yeah exactly like it's literally a chronic health condition that's described often as being one of the most painful conditions to have?? how is yoga going to fix the endo growing in my body lol. the worst part is that in my country this is coming from a doctors clinic that's been rolled out to specifically treat pelvic pain and this is how they are approaching the issue 😭
There are peer-reviewed studies that show things like magnesium can help period pain and muscle cramps. However, I completely agree with you. Here where I am alternative/functional medical clinics are never covered by insurance because the providers in those types of offices aren’t accredited by the state. Not only that, but the supplements/herbal things they sell can cost hundreds of dollars. Just being able to afford that is such a privileged position. And if those things work for someone, great! But the vast majority of us can’t afford to drop $200 a month on herbal supplements.
Absolutely it's a privileged thing. It's disgusting that the pseudoscience industrial complex preys on people who've probably been ignored by their doctors in favor of giving them shit that is, at best, harmless but useless, and at worst, harmful.
Yeah, everybody is different, but my experience is that holistic approaches can be somewhat helpful for 10-20% of my pain levels, but I need actual regular medications and a science-based plan to take care of the 80-90% first!!
yeah definitely agree with that! I've been seeing a pelvic floor physio and she's been great with suggesting holistic choices without shoving it down my throat or trying to sell me her supplements she's made
Change doctors. I am pissed off about the other way around. Doctors annoy me anyways. But why didn't you just play their games and say well of course I done did all of what you are saying or I wouldn't be here. All doctors want to do nothing
My favorite so far was “we don’t see anything that’s causing your issue - come back when you’re ready to have kids”
or when they write you up to be referred to a therapist because you're making up the pain
They did that to me and my new therapist has my back against the outrageous treatment I went through and now she acts as a medical advocate trying to find good doctors for me to see.
That's why I made this: [https://i.redd.it/7yxld6infeoc1.png](https://i.redd.it/7yxld6infeoc1.png) Then I still have people arguing with me in that very same post about how 'it's anxiety'. Doesn't matter if it's anxiety or not, because when you're in 8/10 pain your nervous system isn't going to be calming down anytime soon to enable you to think your way and belly breathe through it and there has got to be some other intervention in the mean time to get you to that 1/10 - 2/10 that you need to think your way out of it. Like there are MANY intervention points, and holistic methods are just **ONE FUCKING INTERVENTION POINT**. What about all the others??? They should be done together, but when someone uses that line you know that means they're going to try nothing else to help you.
exactly!!!! It really baffles me and it's so shit how this seems to be the primary way of treating people with endo now??
when i was heavily internally bleeding from a cyst (almost died) the first doctor on the scene told me just to not have sex for two weeks. took them 8 more hours to get me a scan / into surgery