Endo after Hysterectomy

Just come by from the consultant to be told I still have Endo 5 yrs after my total Hysterectomy! I have slight bleeding but lots of pain and his solution was to stop HRT. I had severe stage 4 (undiagnosed until the op)and am quite horrified at the thought of this being present again!

He suggested herbal replacement therapy and said if there is no change in 6 months we have to go down the route of surgery again!Help!!

Has anyone else had this happen?

4 Replies

  • Hi - please can I ask how old you are, and what dose HRT you have been on and what your oestradiol levels have been at all your blood tests during the last 5 years. I assume you were seen in general gynaecology at that time but should now only be seen in a specialist centre. Where in the UK are you? I was only diagnosed with endo at age 51 seven years after a TAH and BSO after being put on oestradiol levels in excess of normal mid cycle levels. I had stage 4 caused by HRT.

  • Hi...Thanks for the reply.I just turned 46 in Nov.I have never been seen by anyone other than the consultant who performed the Op.I have no womb/ovaries/tubes/cervix and have been on Premarin 1.25mg for the whole time since my op in 2011.

    I have pains in exactly the same area's as before the op but they thought in A&E back in March that it was my Appendix.Was just fobbed off with scar tissue and lesions on my liver and scarring on my bowel (this was stuck together after my op so had problems there 😢

    I have no idea what my oestradiol levels are as I have never had any blood tests relating to this.

    I live in Leicestershire but come under Burton on Trent hospital.

    I was sadly mistaken in thinking that once I had the hysterectomy that would be the end of my problems but alas its now becoming apparent that's not the case.

    Any advice would be fantastic X

    Thank you x

  • It really is quite terrifying how lacking knowledge is in so many doctors and consultants dealing with endo patients. We know that decades ago it was believed that hysterectomy and removal of the ovaries was the only 'cure' for endo and to some extent in considering the days prior to skilled laparoscopic surgery then perhaps those medical forebears can be forgiven for that opinion. It was probably a better option that being butchered at a crude laparotomy in unskilled hands. But we supposedly live in a different, enlightened world now. Even back in 2011 it was known that excision was the gold standard and specialist centres had started to become established. So it should have been known then that without excision there was always a chance that your endo would continue while ever it was being fed with oestrogen, especially when advanced already. It really shouldn't be rocket science to any doctor that if you remove oestrogen production from one source and replace it with another in the form of unopposed oestrogen HRT then there is potential for the endo to continue to be fed. In the 80's I remember that women with endo were not given HRT - it was against NHS protocol - but gradually it has been introduced on the basis that the level must be such that it provides the long term health benefits of oestrogen while being insufficient to stimulate endo. But how can we know what this level must be in any given women when we do not understand the pathogenesis of endo and why some only ever develop minimal disease while others can be at stage 4 in no time at all?

    It has been speculated that the endo that we seem to encounter more and more in very young women that seems to become advanced and extensive quickly may be a particularly aggressive variant that has evolved. It does seem likely that as with any disease endo will adapt and evolve over the years to resist treatment and become more effective in its purpose to do harm. Ultimately it seems likely that this may depend on the efficiency with which a given woman's endo makes optimum use of available oestrogen and this cannot be predicted. At the very least though we should expect that a woman on oestrogen therapy should have her circulating levels regularly monitored and checked to ensure that what would be considered minimal levels are not exceeded. The main female oestrogen and the one that stimulates endo, oestradiol, is the most potent steroid a woman is ever likely to encounter and should be respected as such. For example, great care must be taken to avoid drug interactions that might increase circulating oestradiol levels. This is true of all women with oestrogen dependent diseases and not just those on HRT. For example, the macrolide antibiotics clarythromysin and erythromysin must never be given to a woman on oestradiol therapy as they are not only metabolised by the same liver isoenzyme as oestradiol but are among its strongest known inhibitors which can lead to dramatically raised circulating oestradiol levels. When I was repeatedly given clarythomysin for persistent infections whilst on HRT my levels shot to over 1700 pmol/l and was maintained at similar levels continuously for a period of three years or so. This is higher than most women's mid cycle peak that would occur only for two days a month and lead to a very aggressive form of endo years after my TAH and BSO. So it is vital that if a woman with known endo is put on oestrogen therapy then her oestradiol levels must be closely monitored and care taken with potential drug interactions. It is appalling that you were never given any blood tests but on a daily dose of 1.25 mg of Premarin a normal liver (without unfavourable drug interactions) should have achieved circulating levels of around 220 pmol/litre which would be considered low. And yet you still have active endo.

    Unfortunately a fact that is rarely taken into account (and probably not even known by the average GP or general gynaecologist) is that endo has the ability to biosynthesise oestradiol within its own tissue as a supplementary source of oestrogen to that produced by the ovaries and this source can be a significant factor in continuing endo after hysterectomy/oophorectomy. This is achieved by the conversion of cholesterol to androgens that are then converted to oestradiol by the enzyme aromatase that is expressed within endometriotic cells. Because the oestradiol is produced in situ within the cells it is immediately passed to the oestrogen receptors without being diluted in the circulatory system and is therefore a very efficient means of oestrogen production. In women with continuing endo on HRT there are reports of extremely high levels of aromatase being found in such post menopausal endo. The evidence does point to post menopausal endo in the presence of exogenous oestrogen therapy being a particular variant that maximises aromatase expression.

    Oestradiol is also produced in adipose fat which is achieved by the conversion of androgens in the blood stream to oestradiol which is then available in the circulation. This oestrogen is therefore somewhat diluted and levels would generally be low except in obese women when this source of oestradiol can have an impact on endo too.

    So it would seem that any or all of these factors have contributed to your on going endo after surgical menopause and you should now seek treatment in a specialist centre. As you are in England your current consultant shouldn't even be considering treating you. We know that you previously had stage 4 endo which is still likely to be the case and the NHS contract for treatment of severe endo requires that you are treated in such a specialist environment where the surgeons must have done advanced excision training beyond that of a general gynaecologist. Under NHS Choices you can choose where to go anywhere in the country. Have a look at my post on how to find a centre:


    and the one on rectovaginal endo since you mention a stuck bowel.


    Don't hesitate to send me a private message if you need help with a referral. x

  • Thank you so much for your help and advice.I now have the ammunition needed to get something done!!

    Have a Happy New Year

    Vicky x

You may also like...