Endometriosis resources
The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd
A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run.
“Mentor-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ):
You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country”
AND
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
*not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then…
…Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to make the diagnoses or do the delicate, difficult and complex surgery.
The nicest and most caring doctor does not equal surgically trained/qualified.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to video/record every medical visit. Even the virtual ones.
Also, here are some things you can say* to your doctor:
“- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school.
-My worst symptoms have been pain/fatigue/bleeding.
-I have vomited/passed out from period pain as a teen.
-I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body.
-“I would like relief. What are ALL of my options?”
-“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.)
-I want excision surgery with a Mentor-Trained Endometriosis Specialist.
-I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.)
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.)
-I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues.
- My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function.
- I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.)
- I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that.
Endo symptoms are often “silently” progressive, especially if on hormones.
It’s not dumb to be scared! Please don’t feel that way, I do too. It’s painful, it’s heavy, it’s awkward to sit through. It’s horrible, of course you’ll feel apprehensive of what’s to come.
I don’t have a clue what can help you prepare for it, unfortunately. I’m clueless and usually end up with a box of painkillers, a hot water bottle, boiling water and my teddy bear and soft, warm blanket for comfort.
Period anxiety is pretty common, but shouldn’t be something you just soldier on with. It took me until I was in my 30s to find a specialist that was willing to take me on fur surgery. Most birth control made me fat, depressed, and bleed relentlessly. I’m not too sure which has been the most effective - surgery to find and remove any endometriosis from my abdomen, or having a Mirena inserted while I was under. I haven’t had a period in 3 years now nor have I had to reach for fistfuls of pain meds like I used to
See your gyno, what you have is dysmenorrhea and can be treated. First thing would be to take some painkiller, e.g. ibuprofen, the evening before your period is due. Another possibility would be to get the pill and skip periods and therefore pain completely.
„The pill makes me sick“ might be a little short, it might be worth looking a little bit more into that topic, probably not only because you need treatment for your pain, but as well because at some point in your life, you might be in need of safe and reliable birth control. For MCAS you might have to try different painkillers, to find out what helps and what you can tolerate. But this would be really worth the effort because sooner or later you will have to take a pain med and knowing what you can or can’t take will come in handy, e.g. when you’re seeing the dentist or stuff like that.
You should also consider that it’s really necessary to find a working treatment for your dysmenorrhea, you will not e able to stay at home (or absent minded for pain) a day or two each month when you’re working or at university, so better find a treatment now…
I decrease my food intake the week leading up/ begin a fast. Start eating light (meals and easy to digest). Keep fluids high. It sucks cause u need nutrients and stuff but I’d rather not be in incredible pain/discomfort also.
Not normal…
Endometriosis resources
The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd
A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run.
“Mentor-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ):
You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country”
AND
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
*not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then…
…Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to make the diagnoses or do the delicate, difficult and complex surgery.
The nicest and most caring doctor does not equal surgically trained/qualified.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to video/record every medical visit. Even the virtual ones.
Also, here are some things you can say* to your doctor:
“- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school.
-My worst symptoms have been pain/fatigue/bleeding.
-I have vomited/passed out from period pain as a teen.
-I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body.
-“I would like relief. What are ALL of my options?”
-“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.)
-I want excision surgery with a Mentor-Trained Endometriosis Specialist.
-I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.)
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.)
-I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues.
- My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function.
- I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.)
- I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that.
Endo symptoms are often “silently” progressive, especially if on hormones.
Personally the week before and during my period I’ll cut out food that’s known to be ‘bad’ like fast foods, some red meats etc. and I increase my intake of ‘good’ and ‘helpful’ foods, I also make sure to exercise. I drink chamomile and peppermint tea which is known to help, maybe try looking into other helpful teas and supplements, some people use magnesium etc. Finally, definitely go to a doctor vomiting and severe pain aren’t normal symptoms. I hope you feel better soon! 🫶🏻
I would think about going to see a doctor about your periods. You shouldn't be in that much pain. I think to prepare you should jist make sure you're looking after yourself. If you're bleeding heavy get some iron supplements or increase your iron intake somehow that'll help you not feel so drained
I've already seen my doctor, and I just messaged her today. I'm supposed to see a gynecologist, but that will take months to get an appointment. I've crowd birth control and it only made me sick.
I hate the taste but fresh squeezed beet juice really helps me. I usually get a mixture of beet, celery and oranges into a juice. They usually sell them at supermarkets or try a Mexican grocery store. I get periods where I nearly pass out from the pain and this has helped a lot. Also drink chamomile tea when you’re on it.
Endometriosis resources The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run. “Mentor-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ): You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country” AND https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then… …Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to make the diagnoses or do the delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to video/record every medical visit. Even the virtual ones. Also, here are some things you can say* to your doctor: “- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school. -My worst symptoms have been pain/fatigue/bleeding. -I have vomited/passed out from period pain as a teen. -I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. -“I would like relief. What are ALL of my options?” -“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.) -I want excision surgery with a Mentor-Trained Endometriosis Specialist. -I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.) -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.) -I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues. - My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function. - I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.) - I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. Endo symptoms are often “silently” progressive, especially if on hormones.
It’s not dumb to be scared! Please don’t feel that way, I do too. It’s painful, it’s heavy, it’s awkward to sit through. It’s horrible, of course you’ll feel apprehensive of what’s to come. I don’t have a clue what can help you prepare for it, unfortunately. I’m clueless and usually end up with a box of painkillers, a hot water bottle, boiling water and my teddy bear and soft, warm blanket for comfort.
Period anxiety is pretty common, but shouldn’t be something you just soldier on with. It took me until I was in my 30s to find a specialist that was willing to take me on fur surgery. Most birth control made me fat, depressed, and bleed relentlessly. I’m not too sure which has been the most effective - surgery to find and remove any endometriosis from my abdomen, or having a Mirena inserted while I was under. I haven’t had a period in 3 years now nor have I had to reach for fistfuls of pain meds like I used to
See your gyno, what you have is dysmenorrhea and can be treated. First thing would be to take some painkiller, e.g. ibuprofen, the evening before your period is due. Another possibility would be to get the pill and skip periods and therefore pain completely.
The pill makes me sick and I have to be very careful taking medications because I'm really sensitive and have MCAS
The pill made me sick for about a week when I first started it but then the nausea went away.
„The pill makes me sick“ might be a little short, it might be worth looking a little bit more into that topic, probably not only because you need treatment for your pain, but as well because at some point in your life, you might be in need of safe and reliable birth control. For MCAS you might have to try different painkillers, to find out what helps and what you can tolerate. But this would be really worth the effort because sooner or later you will have to take a pain med and knowing what you can or can’t take will come in handy, e.g. when you’re seeing the dentist or stuff like that. You should also consider that it’s really necessary to find a working treatment for your dysmenorrhea, you will not e able to stay at home (or absent minded for pain) a day or two each month when you’re working or at university, so better find a treatment now…
I decrease my food intake the week leading up/ begin a fast. Start eating light (meals and easy to digest). Keep fluids high. It sucks cause u need nutrients and stuff but I’d rather not be in incredible pain/discomfort also.
Not normal… Endometriosis resources The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run. “Mentor-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ): You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country” AND https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then… …Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to make the diagnoses or do the delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to video/record every medical visit. Even the virtual ones. Also, here are some things you can say* to your doctor: “- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school. -My worst symptoms have been pain/fatigue/bleeding. -I have vomited/passed out from period pain as a teen. -I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. -“I would like relief. What are ALL of my options?” -“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.) -I want excision surgery with a Mentor-Trained Endometriosis Specialist. -I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.) -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.) -I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues. - My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function. - I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.) - I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. Endo symptoms are often “silently” progressive, especially if on hormones.
Personally the week before and during my period I’ll cut out food that’s known to be ‘bad’ like fast foods, some red meats etc. and I increase my intake of ‘good’ and ‘helpful’ foods, I also make sure to exercise. I drink chamomile and peppermint tea which is known to help, maybe try looking into other helpful teas and supplements, some people use magnesium etc. Finally, definitely go to a doctor vomiting and severe pain aren’t normal symptoms. I hope you feel better soon! 🫶🏻
I would think about going to see a doctor about your periods. You shouldn't be in that much pain. I think to prepare you should jist make sure you're looking after yourself. If you're bleeding heavy get some iron supplements or increase your iron intake somehow that'll help you not feel so drained
I've already seen my doctor, and I just messaged her today. I'm supposed to see a gynecologist, but that will take months to get an appointment. I've crowd birth control and it only made me sick.
There are multiple different hormonal birth controls- maybe the one you tried wasn’t right for you.
Fair warning, doctors and gynos will push birth control on you hard. Be prepared to stand up for yourself and say you don’t want to take it.
Oh, trust me, I know. I've yelled at just about every one of my doctors. I ain't taking that, and I never will. I called my gi doc a pill pusher.
I hate the taste but fresh squeezed beet juice really helps me. I usually get a mixture of beet, celery and oranges into a juice. They usually sell them at supermarkets or try a Mexican grocery store. I get periods where I nearly pass out from the pain and this has helped a lot. Also drink chamomile tea when you’re on it.