I have had a TAH and both ovaries gone too 5 years ago. Is the Endo back?

I had 10 years of pain and different treatments and eventually went for a total hysterectomy on the advice of the gynae consultant as i was stage 4 endo with ovaries stuck together and stuck to womb and bowel etc etc. I have been pretty good for 5 years now but in the last couple of weeks the old pain seems to be back. Oh i do hope this is not a return of the dreaded endo. I have also got a lot of other medical problems that have appeared in the last year and feel my body is falling apart.

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  • Are you currently taking HRT?

  • Hi Cudlybarb, yes I have been on livial since the op

  • I had active painful endo for 22 years post hysterectomy, and found relief when the rest of the endo was removed. Dr David Redwine published series of 72 cases years ago of endo persisting after a hyst, and others have done so since

    ncbi.nlm.nih.gov/pubmed/812...

  • That's a really useful piece of information nancynursez637. Thanks

    Sorry to hear your symptoms seem to have returned Chrissie. My specialist seems eager to do a total hysterectomy but I think it's only because he feels stupidly pressurised to come up with something as all other avenues appear to have been exhausted.

    I don't have much knowledge of how to deal with endo symptoms post TAH but as Barbara has asked, are you taking HRT? That could be the issue. The oestrogen in it can cause a return of endo as endo feeds off oestrogen. Excess oestrogen in the body can also be due to poor liver function so it might be worth looking into that too. The liver is so important to many aspects of our health, it's our lifeforce really, so this might be why you are suffering other problems too.

    Hope you find your way to better help. x

  • Hi . . I have posted this previously so apologies for the repeat but, after I had total peritoneal excision for extensive endo, I decided to look into how I could help myself. What I discovered was that estrogen dominance may have a big part to play, not only in increasing endo, but also many other female problems such as PMS, Miscarriage, Cervical Dysplasia, fibroids, Pituitary microadenoma, Menstrual migranes, fibromyalgia, peri-menopause symptoms, osteoporosis, female cancers etc. Over the years I have certainly had 4 of those, PMS, Cervical Dysplasia, Pituitary Micradenoma and finally advanced endo. It is thought all these conditions are encouraged by estrogen dominance. Apparently we all have estrogen (and progesterone) receptors throughout the body and, depending upon where they are strongest, this will have a bearing on what symptoms are finally produced, sometimes more than one type.

    Estrogen dominance is thought to be on the increase over recent years, not because our ovaries have suddenly gone cranky, but because of all the chemicals modern women (and men) are exposed to on a daily basis from shampoo, conditioner, hair styling stuff, body moisturiser, face cream, deoderant, toothpaste, cosmetics, household cleaning products, washing powder, chemicals in feminine care, Bisphenol A (BPA) used in plastics (worse when heated) etc and we all use microwave food and convenience foods heated up in plastic trays where the BPA leeches out into the food. Whilst the pharmaceutical industries would have you believe the chemicals are low level - when combined, it adds up to a good deal of exposure to xenoestrogens - chemicals that mimic estrogen and affect estrogen receptors in the body causing a reaction as if estrogen was increased (which a standard blood test by a GP would not show and likely to be deemed in the normal range). There are also phthalates, which may disrupt the normal workings of the endocrine (hormone) system and sulphates plus a whole host of other chemicals.

    As I understand it, the reason the endo diet helps is because it cuts out toxins that your liver has to process (such as alcohol / caffeine etc). Excess estrogen is eliminated via the liver. By cutting out as many toxins as possible, this gives the liver a greater capacity to eliminate excess estrogen and to do its job. Where it is over worked, excess estrogen is more likely to be stored by the body in fat cells. The thing about xenoestrogens is that they are generally absorbed through the skin and so completely bypass the liver!

    Whilst I am not obsessive about it, I have gradually swapped over to using products that do not contain parabens, phthalates or sls. It can take anything from 2 months to two years for these chemicals to reduce from your system apparently.

    I don't think experts believe that this is the cause of endo or of the other conditions mentioned, as my consultant said it is now widely thought that endo mostly originates in the gestation period and is triggered with the onset of hormones at puberty. It can less commonly be as a result of retrograde menstruation or even sometimes as a result of caesarean section if any cells are not cleaned up and start to function outside. It is thought possible that all of these reasons for endo could be exacerbated by the exposure to these xenoestrogen chemicals. It is the imbalance between estrogen and progesterone that causes natural estrogen dominance at whatever level they might be at, high or low. Estrogen dominance also occurs at times like the peri-menopause where the level of progesterone drops more rapidly than estrogen (which also drops).

    It felt like a minefield at first trying to avoid these chemicals, and it is probably impossible to do so, but I feel at least that I have cut back as far as practical.

  • Thank you all for your replies - Yes I am on HRT, but tried to stick to the one that I had been given whilst on Zoladex. In the last year I have had lots of odd things going on eg. I now have polycythemia (I produce too many red blood cells) Consultant has still not figured out the cause of this yet, I have also been informed that my Kidneys are not filtering as well as they should be, but I do not have the typical health problems that cause this eg diabetes or High blood pressure. So the last year has been test after test/ venesection, bone marrow biopsy, ct scan of head, xray of neck, ultrasound on kidneys and no answers. I have had a continuous headache since October last year and now the pains in my stomach have come back!! So all in all, a return of Endo will just be an absolute nightmare. GP is trying me on some buscopan (anti spasmodic) to see if that makes any difference to start with, then will contact the Gynae consultant for his advice! Sorry for the epic essay, but dont know where else to get my frustrations out. XX

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