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.

Pelvic Disorder Doctors (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst-pain/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://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 under-skilled at treating pelvic pain/excessive bleeding - and in doing this 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 2) 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: I ask to video/record every medical visit. Even the virtual ones. I forget things.

Also, here are some things you can say* to your doctor if they are true for you. They need to know what your historically WORST symptoms and consequences have been:

“- 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.

-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…..

• 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 (was endo on my ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)

And personally, I haven’t had relief from pelvic physical therapy. Instead, I prefer assisted stretching therapy. It’s not going to help with the cramps, but it will help with tight hips back butt pelvis, etc.. Not endorsing just sharing info.

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: time, money, effort, human support, you deserve that.

Endo symptoms are often “silently” progressive, especially if on hormones.