Endometriosis Concerns

So I’m fairly certain I have endometriosis and when being evaluated by a radiologist (for a hernia) and by my doc who’ll be doing my hernia repairs they said my symptoms seem pretty clearly like endo despite all of the gynos I’ve ever had telling me that I probably don’t have anything going on because visually everything looks right and they didn’t see any prominent cysts during sonograms. I know endo can cause muscle tension is the legs/hips/pelvis/back/abdomen and pelvic pain but when I went to my most recent gyno for a vaginal exam, she pressed on the back side of my cervix and the pain was immense. I told her that it hurt when she pressed there (which she said that area was my uterus) but she kind of brushed it off like it wasn’t a concern that it hurt enough to make me flinch/jump. I know I have a retroverted uterus so that could impact the sensation felt in the back wall/depths of my vagina, but I didn’t know if maybe it might be endo triggering that pain more or if there could be some other cause?

Hmm, Endo I feel can be so tricky to diagnosis and the severity seems to really differ person to person. Have you got a second opinion from another gyno? I’m not as familiar with endo, so I’m not sure if cysts have to be present. Even if you don’t have endo but have really severe periods or a lot of pain during your period or around it, that still isn’t any fun.

Are you on any type of birth control? I know IUDs have helped some of my friends with endo.

I say ignore all the doctors who belittled your pain or said “it can’t be endo”, because it sounds like you haven’t spoken with a specialist. I was confused to learn that regular gynos are not equipped to discuss/"diagnose"endo. I’m not sure where you’re from, but I had a virtual appt with a Dr. at Women’s Excellence in MI to discuss. She clarified that she couldn’t give me a diagnosis because the standard for that is to have a laparoscopy, which is somewhat invasive, and that (as such) it’s normal to have an excision at the same time (treatment at same time as diagnosis). BUT she listened to my gyno/menstrual history and said “…yeah. It definitely sounds like you could have endo” and no other doctor felt comfortable (familiar) enough to say “that does sound like endo symptoms! Lemme get you a referral to talk to a specialist”. To have this doctor say “YES it sounds like you could” was so validating for me & it sounds like your doctors have not made you feel validated.

I hope you are finding relief and seeking out knowledge for yourself. Patient self-advocacy is so incredibly taxing, but no one else can advocate for you better than yourself. Even if it’s not endo, you should talk to a specialist-- they may even have some other suggestions as to what it could be! Make sure to ask. As far as pelvic pain goes, look into seeing a Pelvic Floor Physical Therapist. You’ll always wanna check with your insurance re: coverage for “specialty” services/practitioners, but (like any PT) the office should be able to tell you if they accept your insurance.

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