Total hysterectomy advice

[Selfel]

I was wondering if anyone could give their experiences of having a total hysterectomy due to endometriosis. I have been told after MRI that at the least I need to have one tube and ovary removed along with an endometrioma. It has been suggested, however that a total hysterectomy alongside would be best as it would decrease the likelihood of having to be operated on again. I have had an endometrioma drained in another endoscopy and am currently on prostap and livial. Were the side effects worse after total hysterectomy than from prostap? I am 46 and don't plan on having children so would just like others experiences of going for this operation

[Moon_maiden]

Hi

I had a total hysterectomy in 2020, I would say the pelvic pain is much better, the feeling like an alien was ready to burst out went 🤣🤦‍♀️

I also had gallbladder and appendix out in later ops. I am still left with abdominal pain, some pelvic but that’s manageable. I was very late diagnosis at 51 so potentially I’ve been told there might be nerve damage. I am also pursuing more surgery to have clips removed that they used in taking out gallbladder so might be that.

If you do have op, make sure they plan on removing all Endo to reduce the risk of occurrence. I’ve been told I don’t have any since hysterectomy but I did make sure it was on the form to remove it all and he was a good surgeon.

I used Zoladex before hysterectomy and that didn’t work at all. There is no guarantee that Endo just fades away at menopause either. They just don’t know enough yet.

[Selfel in reply to Moon_maiden]

Thank you for giving me your experience and I really hope you get the abdominal pain sorted. I have to have an op either way as I've been told my endometrioma is too close to my urethra and my tube is blocked and swollen. It is difficult to make a choice because there are no guarantees. Ideally, I would want the hysterectomy to mean I need no further ops but I know there is a possibility that may not be the case.

[Rainbow2468]

My friend had a hysterectomy and still suffers badly with her endometriosis sadly. Sending you a safe hug 🤗❤️

[Selfel in reply to Rainbow2468]

That is terrible for your friend, did she also have her ovaries removed? Did she try prostap? Just trying to get all the info. Thank you for your response.

[Rainbow2468]

Hi i believe she's kept her ovaries, but i don't know if she tried prostrap. But I'm on prostrap injections and they are working for me, i didn't want a hysterectomy for quite a few reasons.

[Selfel]

Yes I at the moment really understand how big of a decision it is to make to have a hysterectomy. The prostap is working and I think if I didn't need an operation anyway I wouldn't bother. I think the thought of having to have another operation in the future is making me lean towards this decision. I know there are no guarantees, but if prostap is working that is a good sign that removing your ovaries will also work. Also, I was in perimenopause anyway. If I was younger I also don't think I'd consider it.

[ChicaPixie]

Hello lovely, I had a plan of total hysterectomy in August and ended up having it the only thing they had to leave my cervix behind due to endometriosis in my rectovaginal passage which has made it all stuck together (I've been told).

Also it was supposed to be a keyhole op but ended up being an open surgery and the recovery was much harder for me than just from a laparoscopic op I've had before.

For me because not all endo was removed and my rectovaginal endo and bowel endo is still present I still have symptoms though they are not as bad as what used to be. I was on zoladex prior to going for the op and that not made a huge difference.

If I had a choice I would still go for the op but I would have definitely wanted to understand more about the endo they couldn't remove. As others said there are no guarantees endo will calm down. I do know someone who had hysterectomy and it helped them hugely so I guess it really just depends on your body.

My pelvic pain is much less though. And I have been trying to focus on it holistically with gentle pilates and pelvic physio and stretching etc as well as diet. I'm still not there yet and working on ways to feel better and sadly I know I may still need an op with my bowel endo but I definitely feel a lot better for now at least.

I really hope you will be able to make a decision that's good for you and it'll work out for the best. One thing for sure it helps to have this great forum to lean on.

[Selfel in reply to ChicaPixie]

Thank you for your well thought put and balanced response. I'm glad that your symptoms have reduced and really hope you get this sorted in the future. I feel that practically this would be a positive thing to do, but it is still a big decision to make. What were your experiences with hrt after, did this impact your endo?

[ChicaPixie in reply to Selfel]

Oh you're so welcome lovely, I know what it's like to not be quite sure of what's next. Even if it's all very individual we can share and you never know it might help. Thank you for your kind words. It's definitely a huge decision to make as it changes a lot. It's amazing how hormones can impact on your daily life. My skin has changed and I've had to deal with vaginal atrophy too. The menopause after my op wasn't bad but I've had episodes of fatigue and lightheadedness until I stared hrt.

The hrt part is tricky and I'm still trying to find the right balance. I started on tibolone but it seems I still get flare ups of endometriosis in my bowels at least twice a month but again it's nothing compared to before. I finally got to see an endo gyne specialist who recommended changing my dose of hrt to even lower and seeing how I go. The other option if that doesn't work is trying testosterone gel in addition. All with the view not to disturb my existing endo too much. So I guess my hrt journey is still in progress. It's hard to say if it's the hrt or just the fact that my endo wasn't totally removed which is causing the flare ups. And I've read on here from other posts that a lot of ladies take some time to find the right balance with hrt and for some it's nice and quick.

I hope this helps a little lovely x

[Selfel]

Hiya! Thank you again for sharing. We are all different and have differing experiences, but without enough medical knowledge lived experiences are the next best thing. As an aside, I have read that if you are struggling with using a estrogen, rather than lowering the levels, you can use progesterone to balance and reduce the oestrogens impact on your endo. I apologise if you already knew this, but if not, it might be worth bringing it up with your doctor?

[ChicaPixie in reply to Selfel]

Thank you so much lovely, that's definitely on my to discuss list now 😊. Appreciate it xx