update endo post-hysterectomy/BSO

Just an update. Diagnosed Oct 2011 with bowel endo without any regular heavy bleeding/any idae of a gynae problem. Just a burn out. Complete utter exhaustion for many years and muscle tension. Until I regulalry started collapsing. honestly felt like I was dying - crushingchest pains and a whole myriad of evolving and hanging symptoms until two other freinds/family members commented on endo/ovarian cysts and their own experiences. Underwent hysterectomy/BSOand cervix removal in March 2012. Now you are not supposed to be do much for 6 weeks after it, but I must have been real sick because I resumed work within 2 weeks and drove after 9 days! I felt on top of the world. Now 3 years on and I was hspitalised last summer twice with pain. Itsnow up in my shoulders, back and groin and getting on my nerves. Hada brilliant gynae whom never even thought all this was endo (dont blame him since I am a Dr of science myself and I literlly had to ask him not to throw me out of his office when I first visited him as my symptoms didnt make any sense!) Nevertheless, he proceeeded to surgery and saved me from what felt like imminent death quite frankly. I am sure judging by the stories on here many will relate to it. Unfortunately he doesnt feel this is endo. I have been patient an let my GP send me doing the illar to post rounds and taking a wait and see approach. Of course despite all this, you get used to such distinct pains. And its tahnks to endo UK that I took encouragement to try a new team this week and just wanted to say how pleased I felt my new appointment went. I tried a research/Uni hospital and being a scientist myself, know they are more interested in ay those of us with things that differ from the norm - thats is if you could ever say endo was norm!! It was at an endo meeting that I watched these guys give e lecture before I was diagnosed in 2011. I am hoping that their stats of a return of bowel endo if is right and that a resection may cure me once and for all. In any case, the fact that I am able to get out of bed every day, work (am now a full-time tutor regulting my hours between pains/pacing myself) makes me feel truly grateful for the surgery I was given at aged 38. I cannot have kids now and it makes me feel sad but honestly I would never have had the energy to even think of it. And when I see my niece and nephew and how much it chews up their own mothers energy I am happy to simply work with kids every day and know after work I can put my feet up. If I rid myself of this disease once and for all and can convince myself I can look after kids alone, I may adopt. Ive never regretted the decision, even if it has returned To have had that feeling of pain dissappearing after 8 years, even if it is now back again, was pure relief. I hope you all find such relief even if it is temporary. Wil keep you all posted as to my progress but it looks like a laparocopy is on the cards again.

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  • Will be interested to see how you get on, given my current problems. Good luck whatever the outcome, I wish you well xx

  • Hi - were you put on oestrogen replacement and if so what have your oestradiol blood levels been over the years since your hysterectomy/BSO? My endo was only first revealed at age 51 seven years after TAH/BSO after 20 years of desperate ill health that was so severe that I was virtually unable to function, but like you I had few signs of actual endo and nothing was found at all when I had my hysterectomy. It grew under the influence of oestrogen replacement but my levels were very high. This is documented as a very aggressive form of endo and I had a melon sized aggressive mass with multiple cystic/solid components that was diagnosed at ultrasound as aggressive ovarian cancer, but it all turned out to be endo. Unfortunately it was dealt with by a general gyne and I went on to have stage 4 everywhere by age 55 as the mass had ruptured 4 times. Finally I had full excision to include total peritoneal pelvic excision by one of the country's leading surgeons and have (touch wood) been fine for the last 6 years. You need to be seen by the best of surgeons as this needs to be completely excised as post menopausal endo (especially when associated with ET) can produce its own supply of oestrogen very efficiently from cholesterol in the blood. Where in the UK are you? x

  • Ive just moved to Farnborough. I was initially told after hysterectomy that they left my ovaries in. But I asked the registrar to go check cos unbeliveably I felt they had gone! And I was right! so they thenput me on a small patch hardly worth it 25 micro evorel. After 6 months I stopped it. As had joint pain. Went to another speecialaist womens clinci whom massively upped the dose to that fo a 38 yeard old not 50-60 normal menopausal age. Felt tons better until last summer. Am aware of all you mentioned but I cant stand the lack of sleep, palps, dryness and moodiness LOL. Ive pickd up a goodsurgeon from my contacts at endo UKso will let you know how it al goes over the coming months, that;s if I havent murdered a few folk re the pain and misery in the meantime lol

  • ps brave of you to read all about what you been through. That full on op is not nice either I bet. What did you rate it on a pain scale? My hysterectomy and BSO didnt hurt much. But by golly did the endoexcision on my bowel hurt - 1 week of moving gas pressing on cut surfaces followed by 8 more weeks of not wanting to eat oor visit the loo -narrowly avoided a bag with 3 stitches. Ibelieve though that I may need a resection thi time if they find it

  • I too wish you well and am both very pleased and intrigued as to the outcome as am going through some similar thing at the moment.

    Best wishes and please let us know the outcome. Everyone 'knows' their own body and what is not right aye so good for you to keep pushing for an answer, I think we all deserve one.

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