How does endometriosis survive after hysterectomy?

Hi, I'm 46 and had a hysterectomy 2 years ago. As endo was left on my bowel and urether I was given combined HRT. If ovaries have been removed how is oestrogen still produced to feed endo? I want to come off HRT due to severe anxiety and family history of breast cancer but my doctor said I must stay on it and take anti depressants for the anxiety. I took ADs for a year until six months ago. They worked but I felt odd whilst on them. I don't understand why I can't stop HRT.

11 Replies

  • The HRT is very important as it protects you (from amongst others, ) osteoporosis and from heart disease.

    There are a lot of HRT regimes that may be tried and may suit you more than your current therapy. Maybe you could ask your GP to refer you to a menopause clinc.

    Oestrogen is coming from the HRT but also from the food you eat. Body fat also produces oestrogen and also endometriosis itself will make oestrogen.

    Unfortunately for us ladies oestrogen is bad news as it can feed any endometriosis left. But we need oestrogen as it has protective benefit for our overall health.

    I would seriously consider taking your AD's again, while your HRT is sorted out.

    Best wishes,

    Barbara x

  • Endo can produce it's own oestrogen. The hrt is probably causing you problems. Have a look on hystersisters website. Lots of people post on there about endo after hyst. I took hrt for about six weeks recently as add back therapy for the gnrh drug I am on. It caused huge breast cysts and the breast clinic were very unhappy I had been put on it. Mu mum also had breast cancer so wouldn't consider staying on it for long anyway. At 46 I would think there is no reason to stay on hrt. After 45 it is not considered an early menopause. I'm 47 but kept my ovaries after my hyst two years ago. Needless to say the endo flared up again. I am now waiting or TPE in Manchester but still opting to keep ovaries. I hope you get sorted soon. Remember it's your body so if the hrt doesn't feel right go off it. Your anxiety will probably lessen without it. It turned me into a complete bitch and I am normally a very reasonable person!

  • Also there are many different types of anti depressants that you can try. If one made you feel "odd" there are many more you could try.

  • Thank you for your replies. I asked my GP to be referred to a meno clinic but she said there isn't one and that to see a gynae would be a long waiting list. I really don't want to be taking HRT or ADs. I'm changing my diet and exercising more and slowly weaning myself off the HRT. My anxiety is a lot better and I'm only three weeks into my two month plan to slowly come off HRT. Dilweed1, I agree that 46 doesn't seem too early for natural menopause. I'm just wanting to understand more about HRT and endo post hyster.

  • I'm just going to check out the hyster sisters site. Thank you.

  • Hi SueSG8

    It maybe now you can come off a combined HRT and just take single or maybe alternatives? I was place on combined hrt following a TAH both ovaries removed in the hope of distorying any remaining endo, the benefits out way my risks was 'drummed' into me, im 44year and told i need hrt till im 55!! I still have endo on my bowel, and other areas which is been removed in September, then my HRT will be changed. I read an article inthe daily mail this week on an alternative to help with menopausal symptons called lady care it may be of interest, I'm considering trying.

    Take care x

  • Hi Tjbear. Yes, I saw about the LadyCare magnet. I think I'll order one. Good luck with your op in Sept. X

  • If the consultant did not remove all endo at the time of your hyst (which s/he should have if doing a proper job) then they may still be active. Additionally, google ovarian remnant syndrome. Drs often say it's rare - I suspect it is just under diagnosed. Did you also have bad adhesions at the time of the op? These can also cause a lot of pain. I don't really understand why they left the endo on your bowel and ureter (was is your ureter or urethra?). I have had severe bowel and ureteral endo.

  • Hi there, I had a total hysterectomy at end of September 2010 at the age of 44. The instant menopause knocked me for six. I couldn't get the balance right with HRT and had further removal of endo at the end of 2011. I piled on the weight, had hot flushes every 30 minutes and totally miserable. I stopped taking the HRT and took sage for the hot flushes ( magnet in the knickers didn't work for me by the way, watch out for getting stuck to your shopping trolly if you do get one!!) the weight started to come off as I started to exercise and now 3 stone lighter I have joined a running club and run 3 times a week. I am not very quick but at 48 I think I am holding my own. The high impact if the running is good for the bones so I believe I am doing the best thing possible for me. I do get pain down my left side as the oestrogen in food will never be a friend but for now it is manageable. I believe now after suffering for over 30 years I have a life it just took a while to find it. Stay strong you will get there. Xx

  • I've been on Zoladex now for three and a half years without any breaks and no HRT. It sounds awful what you are going through. It seems there is always one pill that you have to take to counteract the effects of the other. I have to take Adcal to protect my bones from the Zoladex. I must say one good thing about Zoladex though, being put into the menopause has changed me, for the good in my opinion. I used to be a quiet person who wouldn't say boo to a goose and let people walk all over me now people don't know whats hit them if they upset me, my work colleagues can't believe the change in me. I try to control my anger outbursts if its not justified as I know its the Zoladex making me feel like that so I've learnt to count to ten on occasions. My doc won't give me hrt as my endo is so severe he doesn't want anything to stimulate it in any way, so I'm going through the menopause 'cold turkey' lol. They're going to take me off Zoladex in 4 yrs when I'm 50 and see how my body copes then. Anyway, its a long painful road we're all travelling here, I wish you well hun, take care x

  • I understand your dilemma. I too had hysterectomy with ovary removal (a bit was left on my bowel) when I was 44, have been on HRT since and now 49. I had a lump on my breast checked out when I was 46 which turned out to be nothing but the breast specialist told me to keep on the HRT whatever anyone says as he felt the protection of hormones for osteoperosis and heart problems far outweighs any increased risk of breast cancer. In fact I understand new studies have shown no link at all if HRT is started early as in our case. However I don't have a family history of breast cancer so not quite in your position.

    Someone posted a link to a study here recently that indicated that quite a high percentage of women who have a hysterectomy, even those that lose their ovaries, have endo coming back afterwards. I've had some residual pains which feel like endo again though I've been told it's more likely to be adhesions from my ops, so plan to stay on the HRT because if it is only adhesions coming off HRT probably wouldn't make a difference anyway.

    Have you tried changing your HRT? I know there isn't much choice for endo sufferers, however I was on Indivina for a while which I found horrible and made me quite stressed so I changed to Livial which has been a lot better.

    Also you could get your testosterone checked. Ovaries are a main source of it and lack of testosterone can affect not only sex drive but 'drive generally' as my consultant put it and so might have an effect on the way you're feeling. I'm just about to start on Testogel for this reason.

    If you come off HRT I don't think you can go back onto it at a later date if you change your mind - something to do with the affect on your arteries. I think that's what my consultant told me anyway.

    Good luck with whatever you decide to do.

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