Fobbed off by specialist despite confirmed endo

Hello - this is my first post here, I see all you lovely ladies have had so many experiences and I wondered if anyone could give me advice on my current predicament.

Since the age of 13 I've always had nasty periods (as the story seems to start for a lot of us!). Things really came to a head over the past two years in which I have been bed bound for weeks of the month with cramping, severe leg and hip pain, nausea, morning sickness as my times and almost constant PV bleeding, and pain after sex that has sometimes been bad enough to cause me to blackout, as well as having blackouts regularly at other times (not anaemic!). I've also experienced bleeding from my back passage and had constant troubles with bowel movements, and a lot of pain for up to an hour and a half after opening my bowels.

Needless to say it took 15years until I finally had an investigative laparoscopy that confirmed endometriosis on both uterosacral ligaments and peritoneum. I have been fortunate enough that my tubes and ovaries seem entirely clear. My surgeon also put a mirena coil in during the surgery.

I did initially find some relief from the leg and pelvic cramping, not to mention increased energy despite the post op pain. However by week 5 post op most of my symptoms had begun to return. From week 8 I started experiencing chronic diarrhoea within 20 mins of every large meal and this has not stopped. I have already lost 4kg since surgery.

I returned to the endo clinic for my post op follow up last Monday and I've been left very confused. The registrar showed me pictures of what they found, everything has been clearly excised (not lasered) and they definitely got everything. The registrar says I should not have any pain at 12 weeks post op and as the endo has been removed then I shouldn't have pain from that either. All she has suggested is adding a pill (cerazette) on top of the mirena to at least try to stop my cycle (although I last year I was on the implanon implant AND Yasmin run together and still bled throughout). She also suggested that these symptoms are often seenin 'nervous women' and that I should 'be aware' that many women find pregnancy helps with their endo and it can 'miraculously disappear' - which I found infuriating. So I will be seen again in 6months and back to the GP for yet more tests.

Has anyone else been in this position where they have been told their pain isn't related to the endo? I feel completely lost and back at square one as the surgery and diagnosis has not given me the relief I was so hoping for. I have no idea where to go from here :(

Additional info - I am 28, no children yet, glutenfree for 10 years, technically full time employed as a nurse but have been unable to work properly for past 6 months (currently terrified about losing my job!)

Thank you if you manage to read my very long post!

5 Replies

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  • Were you treated at a BSGE specialist centre? Xxx

  • Yes - at the Homerton in East London - it's recently got accreditation as a BSGE centre. This is one of the reasons I am so stumped! x

  • I'm same .. my surgery was December .. no better, in fact worse. Had endo everywhere, stage 4 cut not layered either .. I'm now under a gastroenterologist instead of the gynae, via GP, not gynae .. Surgery made no difference to me .. By time is recovered from surgery I was knocked back by severe constipation that knocked me over .. My gynae at post op wasn't interested either .. Been out on pill continuous that just makes me spot throughout .. Go back to GP and get a referral to a gastro guy .. Good luck xx

  • So sorry to hear your story. I Feel your plight..

    I'm now 8wks post op for extensive RV Excision. Altho some symptoms feel better not all have gone. I was told it may continue as also been diagnosed with Adenomyosis. I used a herbalist and mayan massage therapist who really helped me, when my symptoms became intolerable. Not sure all the hormones together will be helping your gut. I also had really really bad bout of diarrhoea after my diagnostic lap last year, when I was given a heavy dose of antibiotics. Might be worth trying to see someone alternative with a different perspective? But I would also suggest a referral to a gastro specialist. It may be a malabsorbotion issue ? keep pushing ..altho I know how hard this can be. Best of luck xx

  • I just didn't expect this outcome. They are now saying I may have Crohn's too :( feels like one thing after another sometimes. I will build myself up for another battle and will be seeing gastroenterologist soon- will try out Mayan massage too. Thanks for your replies ladies xxx

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