Can Endometriosis still survive 20 years ... - Endometriosis UK

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Can Endometriosis still survive 20 years post hysterectomy if taking Oestrogen ?

Annjeo profile image
11 Replies

I'm new to this group and apologise if this seems a silly question after all this time, but can my endometriosis come back and trouble me if I restart oestrogen?

Some basic background re my concern. In 2001 I had an hysterectomy which included removal of my womb, ovaries and most of my cervix. I was immediately presribed oestrogen and have had no further pain issues over the years. During that time my Dr has encouraged me to drop the HRT, but I have eventually restarted after a year or two away from the drug due to hot flushes and night sweats. I'm now 63 and have been off of oestrogen for the last 2 years, however I still suffer the hot flushes etc and would dearly like try a low dose oestrogen gel or patch. I think my Doctor will be amenable to this, but I am worried that restarting oestrogen may encourage the endometriosis to flare up or regrow.

As I've said above, I don't and haven't suffered any obvious pain or issues from the endometriosis since the op. I was told it covered my pelvic area including my bowels and it was the reason why they couldn't remove the whole cervix.

Am I being stupid worrying about using a low dose oestrogen after all this time, which I know will make life a little more bearable, or should I accept the hot flushes as the lesser of two evils?

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11 Replies
CJR99 profile image
CJR99

Hi,

Bless you not a silly question at all I total empathise and you’re not being stupid it’s so very natural to be concerned that the beast will return!

Given that estrogen is naturally generated within our own bodies I ended up with Endometriosis returning within a short time after the big op removing all my reproductive bits and a significant amount of Endo...I wasn’t allowed Estrogen as there was a malignancy.I have found it super hard so to be honest and if I’m honest I’d rather have had some form of hormonal support...

When it returned my consultant at the time was super shocked and I hadn’t had a twinkle of estrogen therapy!

We are all individuals and no journey is the same but,my present consultant actually prescribes combined bio-dentical estrogen and progesterone for ladies such as ourselves and he’s one of the top Endo specialists in the country...He believes the therapies outweigh the risks of a return of the disease...

If I can offer any further support please do let me know.

Best wishes,

Clare

Peenie123 profile image
Peenie123 in reply to CJR99

Hi Clare, interested in your reply- what bio identical did he prescribe please ? I’m in a similar situation but only 13 months post op but thinking Oestrogel is causing Endo issues, many thanks x

CJR99 profile image
CJR99 in reply to Peenie123

Hi,

He prescribed Utrogestan 100mg once at night and Oestrogel 2 pumps per day.To be honest I’ve not touched Oestrogel as I’m certain my bodies just loves making Endo so I totally empathise.

I’m 48 and almost 4 years post hysterectomy but,didn’t start HRT until 2 years ago.To be honest the Utrogestan is a little difficult to adjust to but,you do notice better sleep,fab skin,stronger hair etc..

It’s prescribed by most decent menopause docs and available on the NHS so do ask your GP though it’s expensive and they often don’t like to prescribe...

If I can help further please do get in touch xx

Peenie123 profile image
Peenie123 in reply to CJR99

Thank you - you’re very kind. Is Utrogestan pill form? And is it progesterone and estrogen? I can google it but thought you might be able to give more tailored answer( thank you again) xxx

CJR99 profile image
CJR99 in reply to Peenie123

Hi,Please forgive the late reply!x

Yes indeed Utrogestan is progesterone (pill form but, can be taken vaginally also)and Oestrogel the estrogen.

On many occasions lovely ladies with or without Endo are not given combined HRT after hysterectomy as so many believe as we do not have a womb we do not need progesterone to protect it from unwanted nasties etc.

However, many specialists now are advocates of combined therapy and to quote my consultant (can't name him on this site but, he's a legend and worth the trips from Newcastle to Liverpool!) when questioned by my GP as to why I had been prescribed Utrogestan," The Utrogestan is mainly to try and reduce the risk of endometrial carcinoma if there is an intact uterus present. However, we are looking to see the same decidualisation of endometriotic disease and therefore although we could reduce the dose of Utrogestan we do run the risk of unopposed oestrogen triggering some Endometriosis again."

Lots of good stuff on these sites:

studd.co.uk/index.php

d2931px9t312xa.cloudfront.n...

Do please get in touch if I can help further xx

Peenie123 profile image
Peenie123 in reply to CJR99

Thank you again so much 😘 xx

Juls1971 profile image
Juls1971 in reply to CJR99

Hi Claire

I have a similar situation. Endo on my uterosacral ligaments which wasn’t removed during my hysterectomy 4 years ago. Been taking estrogen only HRT since then as I was only 45 at the time. Endo issues back with a vengeance last 12 months and after 20 years have eventually been referred to a specialist centre to talk to someone who actually knows what they are dealing with. Thanks for your experience of progesterone HRT - good to know!

Julie x

CJR99 profile image
CJR99 in reply to Juls1971

Bless you Julie do hope you're okay...Please make a long list of all your concerns for the specialist and make sure you feel supported and more importantly heard. Do hope you get the treatment that you so deserve,

Best wishes Clare x

Annjeo profile image
Annjeo in reply to CJR99

Just want to say thank you to Clare for all of your responses on this thread. I feel a little more informed now when I discuss my options with my GP and hope the other ladies do too. 👍😘

CJR99 profile image
CJR99 in reply to Annjeo

Bless you that’s very kind I’m so pleased it was helpful do hope I didn’t take over your post!😘

It is so important we are all supported but,sometimes I feel we’re a little neglected in the hysterectomy category given this is predominantly a reproductive disease...

Here to help if I can and do let us know how you get on xx

Annjeo profile image
Annjeo in reply to CJR99

No, you didn't take over the post. I was pleased that it helped others as well as myself.

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