HRT and endo?

[HeidiBoo75]

I have a history of endometriosis which has resulted in me having a total TAH BSO just over 18 months ago. Shortly after the hysterectomy I was in pain again and was referred back to Consultant, ultrasound showed I had a complex heterogeneous mass on my vaginal vault which was removed last September... I kept being told that I had 'no active endometriosis' at the time, but the same pain in back again in the area where my right ovary would be.. all the same pains, bloating etc.. is it possible that it's endo? I have been on Oestrogen only patches since my TAH, Do you think my HRT patches have flared it up again and are now feeding it? So down about it all..

[Hidden]

Do you mind me asking how old you are?

Did you go on HRT immediately following your op?

xxx

[HeidiBoo75 in reply to Hidden]

I'm 41, I started HRT (Evorel 75) patches about 8 weeks after my hysterectomy xx

[Hidden in reply to HeidiBoo75]

How were you doing without HRT?

From things I've read lately it seems like it's good to try to manage without HRT for a while after surgery to hopefully 'starve' any remaining endo of oestrogen. Were you struggling without HRT? Xxx

[HeidiBoo75]

After my op September just gone I wasn't allowed to go back on my HRT for 6 weeks.. I managed 5 weeks because the hot flushes, insomnia etc were too much. I've been told by my consultant that I need to be on these patches because of my age and because of the risk of bone thinning and osteoporosis if I'm not.., 😣

[klp4]

Hi Heidiboo

I have read your story and hear your concerns, it's entirely possible Endo can return and oestrogen drives recurrence. I was given a combined HRT following a total hysterectomy apparently this further reduces risk of recurrence if some Endo was left behind( this being the case for me). There have been lots of published risks with combined HRT so discussion with your Consultant about your risks would be essential.

I too couldn't manage without HRT either due to menopausal effects which are v unpleasant.

Are you still under the care of Consultant? I have had a lot of support from Endometriosis nurse specialist under the team. Hope you can access further help.

Best wishes

Klp

[HeidiBoo75]

My Consultant wasn't keen to put me on the combined patch (I had several PE's following my hysterectomy and pneumonia, which kept me in hospital for 2 1/2 weeks) maybe that has something to do with it, no idea.. I'm not under his care anymore, he discharged me after my 6 week check last September. This seems to be how the cycle goes.. I had 5 surgeries since being diagnosed in 2013, one a year lol.. I see my GP, she refers me to him, he does the necessary tests, books me in for surgery, have surgery then he discharges me after the follow up appointment. I just didn't think id still be going through this, he told me It was rare of endo to come back after a hysterectomy, hence why he was keen for me to have the surgery. He really wanted me to keep my ovaries though because of my age, but I wanted them gone because ovulation was excruciating every month, but these patches maybe are flaring everything up? I've read so much conflicting info though??

[Hidden in reply to HeidiBoo75]

Can I ask if you were seen at a specialist centre or by general gynae? It is possible some endo may have been left behind.

[ClarePerry1 in reply to HeidiBoo75]

Isn't tibolone combined I'm on a short break as getting crippling pains 3 years after abh and excision xx

[HeidiBoo75]

Yes, I've been under the care of Mr Tsepov, based at QA Hospital in Portsmouth, he is on the BGSE list. Is that what he meant by 'No active endo' then? Like the signs were there but the active?

[BBBOA]

I ve had my ovaries removed and now a hysterectomy. Pre hysterectomy I was convinced I still had some ovary tissue as I was still getting what felt like cyclical pain. I am now on estrogel. I couldn't take progesterone as I was intolerant to it. I would prefer not to be on anything, but having tried several different hrt this is the best I can do. I'm 44 so have to have hrt for same reasons as you. I've looked at natural alternatives they mostly seem soya based or can cause liver damage. I think endo can grow again post hysterectomy, but ideally less likely. I get what people say though.... Estrogen does feed endo. I'm sick of it all tbh and wish I'd been a man!!!

[Marcia71]

If you're in the U.K. You need to get to a bsge clinic. I had tah and bso in Feb 2015 and suffered worse pain as endorsed left behind, adhesions and scar tissue formed and I was on an oestrogen only hrt. It's not so much about endo returning as it continuing to grow. It was there before op so has been fed by oestrogen.

It took me a while to find someone who believed me and she was also head of menopause clinic so immediately put me on a combined hrt - kliovance. And I had excision and other issues cleared up 6 weeks ago and am finally out of pain.

A good hrt to try is tibolone as it's synthetic but combined. It didn't work for me but I've heard good reports from others.

Basically you need endo excised any adhesions and scar tissue cleared up and to have a gel to help further adhesions forming put in. And a combined hrt is best for endo sufferers.

Best of luck it's a horrid disease and a life long struggle it seems.

[HeidiBoo75]

I am limited with the types of HRT that I can use because of my history of PE's now, I can really only use the patches as they are the safest for me, I'm also on an anticoagulant medication for the next 10-20 years as well. I am in the U.K., I'm just outside Portsmouth and Queen Alexander Hospital is a BSGE centre, Mr Tsepov was been great so far, as has Katie Candy, the endo specialist pain nurse who was also assigned to me. Would just like this to be over 😣

[HeidiBoo75]

What are oestradiol levels? I have had blood tests but I thought that was to check the levels of my anticoagulant?