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Endometriosis after hystorectomy

Posted , 4 users are following.

amanda40
amanda40

Has anyone had endometriosis come back after a hystorectomy?

0 likes, 6 replies

6 Replies

  • BloominUterus
    BloominUterus amanda40

    Posted

    I know several women who continue to suffer with it after a hysterectomy.
    • amanda40
      amanda40 BloominUterus

      Posted

      I don't know why I didn't know this after 16 years had some random bleeding which scared me.i was told it wasn't cancer and left at that. It happened again and my gp sent me 4 another referral.had ultrasound then an mri.i get results next week.was in the scan 90mins.they kept going higher up. I know èndo can only be seen by a laparoscopy. So what on earth they may have found I don't know. My stomach is distended I'm bloated windy.constipated..then the opposite.had a double bowel resection as had stage 4 and it was there also.managed to avoid colostomy...just.i have cfs/me just had a flare up and I'm in chronic pain.just changed to duloxetene and have lost weight..the only good side effect! Not sleeping.no appetite n exhaustion. Runny nose n eyes..all bizarre n annoying side effects.but the thought of dealing with endo again...aaagghh

  • Pinhaid123
    Pinhaid123 amanda40

    Posted

    Yes! I had a full hysterectomy - both ovaries removed as well. And the pain came back about a month later. They told me it wasn’t possible; it had to be something else. I also have had IBS since my 20s, and when I started researching I did read that a hysterectomy for endo is not as successful in patients with IBS - however neither my surgeon nor Gyn told me that at the time. It has been about 5 years and I still have pain on and off- endo pain is different from IBS pain but one can trigger the other. Even if you don’t have IBS too, I have read multiple case studies where the endo continues after surgery. It’s not so much that it comes back, but it’s very hard for them to find every piece of endo when they do the hysterectomy and since we always have estrogen in our bodies - it’s carried in fat cells as well - the endo has estrogen to feed on. Yoga and light exercise has helped more than pain meds- which are almost impossible to get here. But I have found over the years in the US that many docs will say you do not / cannot have something if they don’t know what it is or how to fix it. ☹️ Not sure if it’s the same in UK but please don’t let anyone make you think you’re crazy because the pain is back and it shouldn’t be. Keep looking for answers. I wish you the best!
    • amanda40
      amanda40 Pinhaid123

      Posted

      Thank you for your response. Painkillers are fairly easy to get hold of here to be honest,I'm on codeine 30mg on repeat prescription 100 a month. Plus paracetamol, I get dihydracodeine 30mg again 100 in q box if I ask for then. Iv3 been given oromorph 10mg a bottle of it on Monday as I had injections into my shoulders because I have herniated discs in my neck and it triggered a horrific pain meltdown nothing touched it.i tried diazepam and sports. I suffer from chronic pain always have my periods were horrific from age 14. 3 days in bed on painkillers with hot water bottle every month. Diagnosed with endo at 19...I had no quality of life after 13 ops and being in and out of hospital several times a year.. 2 laparotomomies 11 laparoscopy n injections trials...I couldn't take anymore. To be fair I've suffered with lower back pain and random period n ovulation type pains over the years and never associated it with endo? I was diagnosed with me/cfs/fybromyalga several years ago..whether it's got anything to do with it?be interesting to see what mri results say on tues?endo can't be seen by scans..I know that.

      So I may ask for a laparoscopy to check one way or another..I had no idea it could come back? Naive I think?

    • aitarg35939
      aitarg35939 amanda40

      Posted

      Mine came back after a total hysterectomy but it took 27 years for it to do so. The surgeon resected a small piece of colon and my 1st words in recovery were to ask if I'd had a colostomy (no). I was 54 & the only one who'd voiced the endo possibility ahead of what we thought was diverticulitis surgery. I haven't seen a gyn in decades, still haven't, so none of us had heard that it could come back after a total. (We won't go into the percentage of gyns who don't know that endo can return, ahem.) I am never surprised when it comes back after women have a (plain) hysterectomy, tho.

      I have wondered often what the data would look like on return, and when, if comparing women who had bikini-cut hysterectomies vs. vaginal removal. My suspicion is that there's more or more rapid recurrence in vaginal surgery.

      The other thing I wonder about is whether endo also hides in our adhesions. By the time of any form of hysterectomy we've all had one or more laparoscopies. Mine was only 5 or so weeks ahead of my full surgery, but in the near 3 decades before resection I had 2 more abdominal surgeries.

      I did combined, not conjugated, HRT. By the time of the bowel surgery I had tapered back for several years, down to a level that my gp thought didn't even count. Stopped it completely when my surgeon showed me the pathologist's report that stated endo and not diverticulitis.

    • amanda40
      amanda40 aitarg35939

      Posted

      Omg..Ihad a lot of surgeries including 2 laparotomomies..bikini line scars left to right hip 13 laparoscopues and a tah..bikini to above belly button...had double bowel resection where the endo had set like concrete and they did 2 cut and region sections..my bowel was damaged by it..I've had problems going to loo for years..all or nothing. I scar badly and take a long time to heal..so chances are I have a lot of scar tissue and more than likely endo...my stomach is rugby shaped and it's lumpy..again likely scar tissue..off for mri scan tues..which I'm not expecting to show much..altho why I was in for 90 mins still concerned me. I'm going to suggest a laparoscopy I want to know 1 way of the other. !

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