I had a consultant appointment today that has left me feeling incredibly disheartened and confused. I’ve been struggling with worsening chronic pelvic pain for over 9 months that has completely turned my life upside down.
I laid out my symptoms as clearly as I could:
Cyclical Flares: While the pain is chronic, it increases significantly during ovulation and my period.
"Butt Lightning" & Spasms: I get these intense, breath-taking rectal and vaginal "shocks" that follow a uterine contraction-like sensation. They occur during menstruation and ovulation and can last hours on end.
Deep Penetration Pain: Significant pain with depth, both during sex and when using dilators.
Bowel Changes: Cyclical diarrhea and constipation.
Anatomy: I have a known retroverted uterus, which the consultant struggled to even visualise on the ultrasound today.
Despite all of this being localised below my belly button, the consultant tried to convince me it might be Fibromyalgia or referred pain from something else. She claimed that because my MRI (non contrast and non specialised) was "clear," deep infiltrating endo is ruled out, and that because I have a Mirena coil, I shouldn't be ovulating anymore therefore what I describe feeling can't be ovulation pain (I told her I have had ovulation pain and bleeding long before she fit my coil and it tracks on my menstration app). She also said that because I find that my pain increases with physical activity that she also doesn't think it "fits" an endometriosis diagnosis. At first she also said the chronic pelvic pain itself didn't fit, but I said it quite clearly does and highlighted that it is chronic but has cyclical flares.
When I pointed out that I’m already doing the work that would help if it was solely something like central sensitisation - Amitriptyline, diaphragmatic breathing, and pelvic floor PT - and the pain is still there, she didn't have much to say.
The win is that i secured a referral to a specialist who focuses on endometriosis cases. The signals are so glaringly there that it needs to be investigated if only to be ruled out.
Has anyone else been told their localised, cyclical pain is "just Fibro" because an MRI was clear? How do you deal with these medical professionals who try to convince you out of your own reality?