Hrt & endo

Hi 

Just had my follow up at endo centre & explained endo pain is back since taking tibolone hrt after total hystrectomy 5 months ago, consultant thinks endo has started up again & mimicking a cycle, as I have no ovaries does anyone know how this is possible?, when pain is severe I get increasing amounts of vaginal discharge, pretty much the same as before hystrectomy & ovaries removed almost like I am ovulating!,

also told I have a cystocele as well, had internal bleeding after op & burst an internal stitch due to impacted stool 2 days post op strained  badly & ended up in a&e, I'm guessing that is why I now have a cystocele even though the doctor does not think so!.

Am a bit annoyed they gave me hrt after hystrectomy & did not explain to me could cause the endo to wake up.

Anyone been through something similar?.

Many thanks 😄

8 Replies

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  • Hi - I see you had 4 surgeries before so your endo must have been very severe. Where did you have it? 

    Why did you have the hysterectomy - did you have disease in your uterus (adenomyosis) or were your ovaries too diseased to save? 

    We can't mention surgeons but what part of the UK was this done?

  • Hi thanks for your reply, I'm in Cardiff, had large nodule on anterior wall of rectum which was shaved off, mostly endo in rectum and cysts on ovaries & stuck to back of uterus, surgeon said had to have ovaries removed along with hystrectomy, surgeon attempted to remove nodule in past surgery but was not successful. 

  • So presumably the last surgery was at the endo centre?

  • Yes it was & he specialised in endo on bowel, Was a bit taken a back that endo can mimick a monthly cycle after hystrectomy & bso I had no idea,  but relieved it was not all in my head, took hrt for 3 months in total & that's when the pain came back with a vegenance, I'm hoping stopping hrt will make endo go quiet again but not sure? 

  • What is worrying is the surgeon saying he thinks the endo has started up again as if it's normal and this suggests that the hysterectomy and removal of the ovaries was done to 'treat' the endo rather than having the endo excised. A hysterectomy shouldn't be done in an endo centre unless all else has failed (including previous thorough excision) in which case all endo should be excised at the same time which should then be the end of it. However, with 4 surgeries behind you perhaps you had very severe endo and without knowing the full history it's difficult to know why the hysterectomy and removal of ovaries was considered appropriate. It seems odd though if he is talking about you still having endo as if it's normal because the centres are required to excise it all unless it is so complex and high risk that it can't all be removed.

    Endo can produce its own oestrogen within its cells and apparently does have its own cycle. Your oestrogen levels are important so have you had a test as you should have done in 5 months? The other possibility is that you had a bit of ovary left behind (an ovarian remnant) which would then carry on producing cyclical oestrogen.

  • To be honest every time I see consultant he confuses me, and I don't have much faith in what they say, apparently I had four exicisions but they could not remove all of it due to the location on bowel & it being too risky, was told having full hystrectomy and bso would more than likely solve pain & they supposedly have removed nodule of endo on bowel wall which was 15cm, seems abit large lol, every time I ask if they removed all endo they say yes, but then said today hrt has stimulated it again am confused, first appt said no cystocele then gone back today & they say I have, been given gabapentin again, and oxybutynin to relax bladder & see urodynamics, thing is I would not have a prolapse if they had given me laxatives after surgery, due to all the drugs I was given I had a large impacted bowel & caused internal damage,  thanks for info, I've lost a bit of faith in doctors after my mum was dismissed for over year & she now told she has a brain tumour, when you know your body is not right you have to trust your instincts, sorry for long post! 😂😄

  • Hi there

    I had my ovaries removed after lap last August and went onto HRT, I'm 44 with no kids. After 6 weeks my pain returned with a vengeance and I was told to stop taking it. Withdrawal was awful and I felt like crap for a month with headaches and light headedness. 3 months on I feel so much better. My endo is deep infiltrating on uterosacral ligaments and pouch of Douglas obliterated, uterus retroverted etc. The hrt was feeding it and making it worse. I've majorly got into the exercise routine and feel great. Back to consultant this week and going to resist any attempts to return to hrt. Hope you get some reprieve of pain doon  - keep your chin up xx

  • Thanks so much for your story, I'm so glad you are feeling better, I'm similar to you started hrt & within 2 weeks endo pain came back just as before op, tried to explain link to my consultant but said it was not possible now they have back tracked & told me to stop it, I was feeling awful taking hrt, no energy & so tired, I was feeling great after hystrectomy until I took hrt, I hope I can go back to feeling good soon, am taking co codamol daily to cope with pain, making it hard to work when my head is fuzzy!, I am still running to keep fit but have a prolapsed bladder now so will need to find a less impact excercise to do, am 39 with one child who is grown up 

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