Endo after menopause and HRT

[SuChev]

Hi All

I'm new here Although I've been using this website since being diagnosed for information purposes, this is my first post.

I'm just looking for some advice really.

I had my womb taken away 8 years ago (when I was 30 - now 38) due to cancerous cells and then 2 years ago I started with pain in my pelvis. That was the start of my story, which is almost identical to most stories on here........months of trying to convince the doctor it wasn't in my mind or my IBS, months of waiting for a laparoscopy, it getting cancelled and waiting again. I've had two laparoscopies now and my right ovary has been removed. The pain is still there and gradually getting worse again. I saw my Gyny last month and asked for a total hysterectomy. My surgeon has doubts it will work as I have already trialled Decapeptyl and didn't see much difference in the pain although it did help slightly.

In short, I feel like I'm out of options. I wanted to take a chance and have a hysterectomy, inducing a surgical menopause, but now the more I read, the more confused I am on whether I'm doing the right thing and if it will cause more problems than it helps.

Is there some ladies out there who have had a total hysterectomy due to Endo and taken HRT after? Did it work or make things worse? If Endo does come back after the hysterectomy, can you have more laparoscopies or do you just have to live with it?

Sorry for all the questions but I am really scared that I'm going to have the surgery and either go on HRT and get the Endo back, or not have the HRT and suffer with all manner of menopausal problems.

Any advice or similar stories would be helpful

thank you

Mandie

[Hidden]

I had full hysterectomy in May complaining for decades about bad periods. Woke up from operation to be told I had major endo and it had been removed. Now five months on I am on my second lot of HRT but I am getting join pain again.

Personally I am glad of the operation as I have got my life back and able to function (no cramps, mood swings, lethargy and no 2 year long period, IBS). Still getting no help from GP or hospital but will not give in, was given no aftercare help. I did suffer with the night sweats and dryness and HRT has slowly decreased symptoms. What the doctor prescribed was a low dose and I MUST check myself regularly.

[SuChev in reply to Hidden]

Thanks for the response! I'm lucky in one way as my Gynea is a Endo specialist (My GP is worse than useless), but trying to get to speak to him is like trying to get a meeting with the queen. I always seem to end up in front of one of his team and they then have to keep popping out to ask him questions.

Are they keeping an eye on your Endo or have you been totally discharged? Did they put you on HRT straight after the op?

[Hidden in reply to SuChev]

No one except myself keeping an eye on my Endo. Regarding my operation I had a 5 minute appointment after two months latter and no help since. Woke up from operation and was given no guideance at all. Hospital would not put me on HRT said it was up to my GP. So I had to recover from the operation (two months latter) whilst going through the menopause and then made an appointment to see a GP.

Have now made another appointment to see GP regarding continued hip pain. Have looked on the internet which has given examples of 15% of TAH still having Endo as it can grow in the scar tissue.

[SuChev in reply to Hidden]

Sounds like you've had an awful time of it. I hope you get sorted soon

[Shelly92 in reply to Hidden]

This is a very interesting post .

Perhaps Lindie could answer better .

If you have all organs removed and endo still grows then that makes me think we are dealing with many sub types of endo .

Maybe some endo grows with out female hormones feeding it

Maybe somethin else is feeding it

Perhaps there is still

Some hormones being made that feed the ugly monster

Like I said I'm not real knowledgeable on it all and I think Lindie has done much research and may have a better answer as to what's going on

🙏

[Marcia71]

Hi

I had a TAH and BSO in Feb 2015 done by General gynae and he left endo behind as believed it would just die off.

I then had lap to ablate it and remove adhesions but still in loads of pain and trying to get another lap. At least I'm now with a BSGE centre so hope if I can persuade them they'll excise any remaining endo to get rid of it more approapriately. Also I suspect more adhesions have formed causing pain so need those removed too and I want a barrier put in after op to hopefully stop more forming as I've not had that before.

I was put on HRT (tibolone) as I left hospital and it did nothing for me. Then on evorel Conti a combined HRT patch. Ok ish on that and then had lap. This surgeon was supposedly an expert on endo but clearly out of date and she put me on evorel 50 which is just oestregen and whilst I felt better with hot flushes and menopause symptoms pain continued. At first BSGE appt I was told to stop that immediately as worse kind for an endo sufferer and told to try another combined one - Kilovance.

Long story i know but wanted to try to help. I actually ended up with no HRT for about 3 months as blood pressure too high and I think pain improved a little. Only been back on it for a month now and pain increasing. But also I've now been on tramadol for pain for 2 months so could be my body is used to that and needs more.

Whilst I think I'm at right place for treatment it's a real fight to get any as they keep telling me it's unlikely endo can return once you've had your ovaries out. My argument is that it was never properly removed so it's continued to grow rather than return. I know it's semantics but I'm still in pain so what else is going on!! I've tried various pain management things and don't seem to be working for me so at next appt at BSGE I'll be asking for a lap to see what's happening and remove anything there.

So whilst it's great not to have the heavy periods I was I'm in more pain so I'm not an advocate of TAH and BSO for endo help. Make sure your surgeon is BSGE accredited. Also I'd suggest joining a new Facebook group called endo revisited as run by Linda (Lindle on here) and she had TAH and BSO along her endo journey and had lap after so hopefully can give more advice

Best of luck

[SuChev in reply to Marcia71]

Thanks for sharing. Sounds like you've had a rough time of it.

I had my womb removed at 30 so my periods stopped then. Therefore the only benefit for me having a total hysterectomy is that it stops the endo. It sounds like it might not work going off the few stories I've read but then again, my other option is to just keep having laparoscopies, so a bit of a lose/lose situation really.

I'm at least lucky that my hospital has a bsge and I've been with them since I got referred. I can't fault them really apart from the waiting lists, but that's not their faults.

I hope you get sorted soon and thanks for the heads up about the Facebook page!

[Marcia71 in reply to SuChev]

Thanks. I hope you get some more info to help make the decision. I'm sure at some point the endo must stop regrowing so you'd stop having to have laps. Well we can hope!!

[Shelly92]

I can only say for me

I went into unassisted menopause early

Yes I had hot flashes and all of it

But I figured that if I took hormones which were the very thing that made it worse every month I would not take

I dabbled in them but stopped

I have read that it takes a few months of the hormones being inactive so endo can dry up

I do not know if that is true but it makes sense to me

Take the food from the thing that is growing because it's being fed and it will die

I have been pain free for over 15 years

Yes my uterus is stuck to my colon and I find ways to keep it running

But it's a hell of a lot better than the pain I had

So surgical removal I'm not sure

It makes sense to let it die out and you should never be on hormones for long anyhow

Maybe another can help more

I do feel that taking female organs out does not stop endo where

It may be hiding

And you don't want to feed it that's for sure