HRT feeds endo?

[AmyLee]

Still can't make my mind up about taking HRT nearly a year post hysterectomy! Endo specialist says take, refers to theory constant level stems growth?? Loads of endo ladies take it but then I read compelling evidence and personal stories that oestrogen fuels endo. Thinking of taking livial (tibolone) the oestrogen free HRT. Thoughts / experience anyone? There seem to be no definitive answers with this disease.

[Saz13]

Same boat ! Came back from app today I'm on 6 th injection to shut down my ovarian remnant and told I must take the livial ! I managed 6 month without and am scared of the endo and mass on remnant returning ! My remnant is stuck to bowel and vaginal vault

Was told I could fuel it all up BUT need the livial for my bones , I'm 40 and suffered 23 years - it was HRT that made my remnant grow to a fully functioning ovary again xx

[AmyLee in reply to Saz13]

Why do a lot of the specialists continue to push HRT I don't know.

Have you had MRI or ultrasound or how do you know about remnant being stuck to bowel etc?

I wanted to keep ovary for long term health. Not sure was best plan now. More interested in re gain short term health

[Saz13 in reply to AmyLee]

My remnant was seen on an ultrasound as was admitted for this lump in groin - she then did a transvaginal and showed ovarian remnant - went to gyny and MRI showed that it was stuck to my vaginal vault and sigmoid colon also stuck to both - my cecum is stuck down where my ovary was and where I had adhesions tethering ovary to my rectum and bowel previously

I kept my ovary when had hysterectomy then 10 year later started with pain so had it out, problems ever since, almost two year since had it out I've been seeing gyny and bowel man - also got problems with bowels as stuck down so now on emema laxitives and suppositories - it's awful how it affects is isn't it ! They don't want to do more surgery due to me growing adhesions ! I don't know what to suggest to you to do

The HRT made my remnant grow and now I have to take it for bone health and I'm scared of the pain coming back really as was so debilitating xx

[AmyLee in reply to Saz13]

Sorry to hear of all your troubles. It's never ending isn't it. I suspect I'll try the livial but no rush I've just gotten used to taking a very low dose antidepressant which is massively helping me cope and think clearly.

All the best x

[JeanOsborne]

Hi livial contains no hormones. It is a steroid which mimics oestrogen. It is the safest one to use with endo. Having said that if all endo is removed normal hrt shouldn't be a problem.

I was put on livial 2 months after TAH, BSO and excision. However my hot flushes were so severe they would stop me in my tracks and would have to sit down untill it passed.

Feeling confident that all endo had been removed I changed to Elleste solo. Big mistake.

It rather looks like some was missed as yet again I'm in daily pain. For the last couple of months around the same time I actually feel like I'm due my period.

No one can decide for you but you need to do what you feel is right for you.

Good luck.

[AmyLee in reply to JeanOsborne]

Thanks Jean. I'm sorry to hear of your troubles too. Once I've spoken to endo specialist about livial I think that's the route I'll go down, as I'm not willing to risk exacerbating endo - which I know remains on remaining ovary and who knows where else it might have not been seen.

All the best x

[Saz13]

Livial can still cause endo to grow but in my case HRT estradiol helped the remnant grow, and produce cysts again, the burning pain I had near this lump has eased while been on decapeptyl and I would sooner stay on that than face more surgery, but they don't really want to do that or surgery as I'm a mess inside

Hope you all go on ok xx

[Marcia71]

Hi

I too had hysterectomy in Feb 2015 and also had ovaries removed. Was on combined HRT and endo came back so had another laparoscopy then consultant (General gynae) changed me into oestregen only one - big mistake as pain returned much worse.

Finally referred to BSGE clinic and they told me to stop HRT and see how I go and if anything try Tibolone (livial) as synthetic but combined.

So far I'm surviving with nothing but hot flushes and insomnia not great.

Menopace are helping a bit as is acupuncture so id say to try more herbal or natural things first.

I did have bone scan and density is ok but figure even if not I'd rather be out of pain now than worry about bone health later. Not ideal but where I want to be.

So I know it's hard but it's best to make your own mind up based on what you can deal with.

Good luck.