Please advise: can I still have endometriosis after hysterectomy + oophorectomy 28 years ago?

I'm 74. I'm still taking HRT as unable to withdraw without black depression - could this be "feeding" adhesions? 34 years ago after a laparoscopy I was diagnosed with endometriosis after presenting with interstitial cystitis, gut, general pelvic + back pain (which sometimes reached my neck and head). I'd become unable to stand or walk slowly for more than a few minutes on some days. Sex, bowel movements, bending & massages all made this worse. I was given medication (Tamoxifen?) but couldn't cope with the mood swings & stopped it. In 1988 after being diagnosed with v. bad pelvic varicose veins by gynae, I had a hysterectomy + oophorectomy followed by HRT to sort the problem. Since then the symptoms became magnified by a factor of at least 10, though have now abated slightly. Could I still have endometrial adhesions being "fed" by the HRT (which I seem unable to withdraw from without black depression)? Could laparoscopy/surgery help? I'd be so grateful if anyone can offer me some pointers. Thank you in advance.

3 Replies

  • Hi - in those days little was known about endo and there were certain limited treatments offered, namely hormone medications such as Danazol and dydrogesterone and if they failed, a hysterectomy and removal of the ovaries. That would cure all our problems we were told. The most worrying thing to me in terms of how little progress has been made in the years since then is that general gynaecology departments so often still seem to believe these are the only 'cures'.

    The theory was that removing the uterus will prevent endo from forming from retrograde menstruation - and since this is now believed to be involved in endo implantation it most likely will. Removing the ovaries would then cease oestrogen production and make any endo in the pelvis either regress altogether or lay dormant - or so it was thought - and in fact for many women with mild endo that can prove a permanent solution. BUT oestrogen and other ovarian hormones such as testosterone are very important for a woman's well being in terms of heart and bone health and other benefits besides, so this was really only appropriate for women over say 40. When I first started with symptoms in the mid 80's (that went on to be undiagnosed for over 20 years) it was unheard of to give HRT because of the risk of activating the endo. It was very unusual for you to have been given it especially at age 40.

    But HRT is simply just replacing the ovarian endo that fed it prior to oophorectomy so yours has likely just carried on progressing over all these years. Age will have nothing to do with it. I had my hysterectomy and BSO at age 44 (apparently for the worse case of PMT the doctor had ever come across but I only found this out when getting copies of my records many years later.) I never suffered from PMT. My problem turned out to be severe allergy to oestrogen which I had worked out for myself as the horrific symptoms first occurred over just 2 days with the mid cycle surge. I was finally diagnosed at age 51 with stage 4 endo that had grown under the influence of HRT. This was 7 years after my TAH and BSO.

    No one is supposed to be given HRT after age 51 whether they have endo or not as there are great health risks. Has this been your choice against doctors' advice? You can expect to feel very rough when stopping as you are thrown into menopause but have to get through that patch like a woman going through a bad natural one.

    So the most important question is what have your oestradiol levels been over all of the years you have been taking oestrogen replacement and what sort and dose is it?

  • Thank you so much Lindle for this. Really interesting and ties in with what I've been thinking recently.

    Why on earth is a woman of my age on HRT? You may well ask. It's a long story and I clutch at straws trying to connect the different parts of it.

    I seem to be a highly addictive personal, physically. The black, black depression that I descended into during my various attempts to kick the HRT are something I've not succeeded in dealing with. Much more than experiencing a normal menopause. My GP understands this and together we've looked at the stats on health risks and balanced them with my general health which is excellent for my age and decided to continue on a low dose of 0.75milligrams oestrodial via a gel per day for the moment and, yes, we are spreading the doses now and I'm trying to come off eventually.

    My hysterectomy and oophorectomy in 1988 was done by a different gynae to the one who said I had mild endo. The hysterectomy and oopherectomy were done, I was told, not for endo but because I had extremely bad varicose veins in my pelvis. I actually saw them on the screen when they did an ultrasound with some radioactive tracer whizzing around my pelvis, and they did look gruesome. They said that the veins were really bad (7 out of 10) and that the op would help. I would, in the words of the surgeon, "fly like a seagull" afterwards. The op would also help my horrible interstitial cystitis and associated gut problems, he insisted.

    After the op I immediately went downhill for many, many years. Twenty times worse than before and in such terrible pain I couldn't think of anything else. I couldn't stand for long or walk much. I was often to be seen sitting on walls en route to my local bus stop! I became hyper-intolerant of most foods. I was peeing every 5-10 minutes. However, with the support of my wonderful husband I kept working and pretending I was having a normal life.

    My gut doctor finally persuaded me to start taking the antidepressants Motival and then Moditen for pain control (not for depression in my case) and they worked brilliantly for a year or two but then I had to keep upping the dose and adding in other antidepressants to boost their effect. I continued to take these drugs well past the recommended safe period for their use. I'd become highly addicted and no other method of pain control helped - I'd tried everything conventional and alternative. I was unable to take amitryptiline, the most common antidepressant for pain control.

    Then, eureka, about fifteen years ago I started taking Glucosamine and Chondroitin for a dodgy knee and discovered many of my pelvic and back symptoms abating over several months - my gut doctor said this made a load of sense! I also discovered something called Cysta-Q, a US alternative product for bladder problems with anti-inflammatory effects which helped enormously. Amazingly, my gut and bladder symptoms got slowly better. The pelvic and back pain too, along with my standing and walking issues - they were no longer constant.

    I decided I could finally come off the anti-depressants. However, I had horrendous withdrawal problems which I'm told isn't surprising after 20+ years on so many of them. After 15+ years of ghastly emotional withdrawal symptoms I finally kicked the last of the antidepressant cocktails last summer, but of course I'm still left with intermittent pelvic and back pain often reaching to my head and triggered easily by even minor gut issues or just standing and walking. However, on good days I can still walk vigorously and run and enjoy this very much.

    Naturally, I've checked with physios and osteopaths etc and there seems to be no obvious physical explanation for my symptoms. Bone scans for osteoporosis show a skeleton of a 35 year old (probably thanks to the HRT according to the doc!).

    The crazy thing is that some days I seem to be entirely free of problems, Other days, even the shortest period of standing, or just walking slowly in particular, can trigger a week of misery. I now always book a wheelchair when flying as there's no way I can risk a week of pain as a result of the security or check-in queue.

    My new gut doctor at ChelWest hospital in London says he's certain that adhesions are causing my problems. I've had a recent colonoscopy which showed only mild diverticulae and the odd non-malignant bit of this and that which they snipped out. I never even mentioned the endo history to him and he hypothesised that the adhesions were the result of my hysterectomy (I forgot to tell him I had the same problems albeit to a much lesser extent before this).

    I'm going to ask my GP to refer me to ChelWest Hospital where they have a good BSCG Centre and ask for a lap to see if I still have endo, or just regular, post-op adhesions and hopefully get them zapped.

    Gosh, Lindle, if you've read this far, very many thanks. I feel I've just completed writing War and Peace...

    And of course, if you have any other ideas that might help me, I'd love to hear.

    And finally, I do hope that your endo problems can be resolved. You do sound as if you've been through the wars too and had a horrible time. Good luck!

    I really appreciate the trouble you’ve gone to in your reply. Thank you and very best wishes – Zinfandel

  • Yes, I've reached the end! You had a hard time but it's hard to understand why it wasn't your endo that was addressed over the more recent years when more has been known. It is almost certain I think that you will have had deep endo all those years ago that was missed. Have a look at my posts on rectovaginal endo and endo on the uterosacral ligaments.

    Endo is an autoimmune disease underpinned by aberrant immune and endocrine function and resulting hormone imbalance. It is connected with all sorts of other autoimmune related conditions such as chronic fatigue syndrome and fibromyalgia both of which are thought to be linked to oestrogen as endo is. The spectrum of symptoms that fall under these syndromes is vast and in the case of CFS involve much more than the absolute fatigue associated with autoimmunity - dizziness, confusion, visual disturbance, disequilibrium, memory loss, aches and pains, crippling 'nerve' head aches...These symptoms were the worst for me and eventually made be virtually unable to function.

    It is thought that endo lesions communicate with these other systems to cause havoc and I do think many of your symptoms will have been a direct result of what I suspect will be severe endo progressing over all the years that have got you in a self-perpetuating cycle of symptoms. Endo is associated with chemical intolerance and medications can only add to this as well as compromising the liver which may then not metabolise oestrogen efficiently and this can all result in chemical allergy, the symptoms of which are exactly the same as those documented for CFS. My personal view is that they are one and the same.

    You are going to need a very skilled endo centre as you will be an unusual case. Endo that is associated with HRT is documented as a particularly aggressive form such as I had. Even specialist endo surgeons will probably not have heard of this and when I have time I'll dig out the papers I had on it and sent copies to you. The sonographer doing the ultrasound in 2005 said it was most likely very aggressive late stage ovarian cancer from a remnant as it was so advanced. It looked nothing like endo to him.

    Obviously wait to see what they find but it may be that you need to take a medication called aromatase inhibitors to stop all oestrogen production in your body, including from peripheral. You will have to get off the HRT somehow. Have a look at my post on oestrogen production too.

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