Hysterectomy/ removal of ovaries and endo removal

[thebird1]

Hi all,For those who have deep infiltrating endo and have had a hysterectomy ......just wondered if you've started on HRT and how that is going. Do you find it flares any endo tissue if it wasn't all removed? Just wondered what you'd been advised? I've read a research paper that suggests that it is contraindicated in deep infiltrating endo after hysterectomy. Thoughts?

Thanks all

[Dogmad6]

I've never touched HRT, far too scared of it. I still suffer with endometriosis 21 years on from hysterectomy and oophorectomy and several excision operations to remove endometriosis. I get excruciating pain at times. I use a walker or wheelchair due to leg and pelvic pain, can't walk any distance at all. Only you can decide but that's been my experience without HRT. xx

[thebird1 in reply to Dogmad6]

Thank you. Sorry you are struggling so much still. I know hysterectomy isn't a cure for endo. Sometimes it's so difficult to know what to do xI'm hoping you have better days ahead with the symptoms. Take care x

[Dogmad6 in reply to thebird1]

Hi, yes it can be difficult, it's such a tricky illness to deal with. I forgot to say I actually had ZOLADEX injections for about 10 years after having all my operations. I don't regret that at all, it kept my symptoms more manageable. I really hope you can get the relief you hope for. It does happen for some people so hopefully you can have a better life ahead. Deep infiltrating endometriosis is horrible. Take care and good luck. xx

[ChicaPixie]

Hello lovely, I've had my hysterectomy in August last year and started on tibolone 9-10 weeks followed by the surgery. I have a deep infiltrating rectovaginal endo and bowel endo which they couldn't remove when they did my surgery. They also left my cervix behind as it was too stuck with endo, for my safety (I've been told).

I since have changed a gyne to one that specialises in endo and continued with tibolone but also had flare ups of endo sadly with lots of bowel related symptoms including bleeding with BM. My gyne asked that we reduce tibolone to half dosage and now we introduced norethisterone (synthetic progestogen). I've only just started to take it. So too early to say if it's helpful yet. All of this is to help with menopause but also not to anger the existing endo. The additional option I've been given is using testosterone. Though if these don't help the only other option for me is further surgery but this time involving bowel resection.

I think with hrt based on what I've seen on here and my own experience it'll be a very individual aspect as it seems some ladies find that it helps straight away and some need to have it adjusted in a way that doesn't flare up endo too much and some won't take it. As I'm 38 my gyne feels is important with bone mass etc. I also experienced a lot of menopause symptoms so find that tibolone helped a bit with that side.

I have tried to look at this whole thing holistically and found physio for pelvic floor and gentle pilates to help with pain. I've also adjusted my diet so to avoid things that could possibly cause issues like gluten and lactose. I stopped drinking alcohol also.

Like you I've tried to read about it but hard to find a definitive answer.

I'm not sure I've answered your question but hope sharing where I'm at might help you a bit.

Best of luck lovely x

[thebird1 in reply to ChicaPixie]

That's really helpful thank you. I have endometriosis in the same locations. I've been in medical menopause since June in prep for surgery next week. Pain has been worse. They added in HRT after 8 months....Tibolone initially but I felt so low I came off it. Then 25 mcg estrogen patch which I had to cut in half and still had pain! I came off it all 2 weeks back and my pain is still there but better without the estrogen!!!! I was on Utrogestan too which helped to balance out the estrogen. That's why I'm concerned re HRT or not!They are hoping to remove cervix. I guess we'll see what happens on the day. It is an endo specialist doing the surgery mind so I'm lucky!

I really hope you get some relief in the coming months. It is a real challenge living with this condition. I'm generally a really positive person but must admit it's really got me down in this last year! So glad for this group x

Take good care of you x

[ChicaPixie in reply to thebird1]

Thank you so much lovely, gosh you've been through it all haven't you. Sounds so similar to me I had taken zoladex for 6 months prior to my surgery. Which was pretty horrendous for me.

I'm so glad it is an endo specialist that's doing your surgery, this is where I wish I had known it really does matter.

I'm sending so much strength your way and wishing you the very best for the upcoming surgery. I hope it will go as smoothly as it can do and then of course just take it slow and listen to your body. And just know it usually takes much longer than the standard 5 weeks they tell you so just be gentle with yourself.

Ditto, I'm normally an upbeat person but I have to say it has impacted on my spark for sure. This forum and all the women on here openly sharing their experience has been a massive help in my journey xx

[K2023]

hi, I had a total hysterectomy June 23 and was advised under no circumstances no to HRT..At first I thought I can’t cope with the hot flushes and other symptoms but after 6/7 months I’m glad I didn’t push for it as my body has found its new way without hormones and now when I think back to the horrors and affects of having hormones I feel the advantages are better not having it.i hope everything goes well for you xx

[thebird1 in reply to K2023]

Thank you x That's really helpful. It's a minefield isn't it!

[1Poppy1234]

I'm not taking it I'm too scared and knackered coping ok so far. X