Hysterectomy

[Holleymuzz]

I received my date for hysterectomy. I had stage 4 endometriosis at last surgery (they said they removed it all , but we all know the story on that front) I was also diagnosed with adenomyosis. Hormonal treatment hasn’t worked in the past. I’m in pain almost 24/7. So my only option was to have a partial hysterectomy, trying to leave ovaries behind as I’m only 32. I have child who is ten. Been in a relationship for 8 years, he lives with and brings up his 3 children. So we live separately, I cope alone, so having another child any time soon isn’t on the cards, I wouldn’t be able to cope.

But when the appointment date landed on my mat my heart broke a little. Can any woman in a similar situation who have had a hysterectomy reassure me?

[ChloeV]

Hi. I’m 42 with two kids (7 & 5) with the exact same diagnosis. I had a full hysterectomy with removal of ovaries and cervix in December 2018. I don’t regret it at all so far. Even through the post op recovery I felt so much better after the op than before. The pain was so much less, my digestion is causing me so much less discomfort, my energy levels are increasing, no more migraines. I am on low dose oestrogen only HRT. I haven’t suffered many menopausal symptoms, just a bit of head fog.

It is a big op and it has a lot of emotion attached to it for sure. But if your life is currently taken over by the Endo, then it felt to me to be worth having the op to get my time back. I also thought that being in better health would help me be more present for the kids I have and adore. Before the op there were too many conversations about all the things I couldn’t do with them because of the pain etc.

You are younger, so it is different for you but hopefully this helps you a bit. All the best.

[GreenF in reply to ChloeV]

Hi Chloe, thank you for sharing this. I am seriously considering a hysterectomy. It has been offered to me repeatedly but I keep on turning it down due to fear that it won't completely rid all of my endo as I have bowel involvement. Could I ask how you're feeling now? Do you still feel much better for it? Has the HRT caused any of your endo to return? And did the removal of your cervix cause any problems? Sorry for all the questions, please pm me if you would rather discuss in private. I would be so grateful to hear more about your experiences!

[Holleymuzz]

I do know that a complete hysterectomy is not a reliable solution for endometriosis. As the endo can create its own hormones to grow and Feed off. It is a cure for adenomyosis and that’s basically endometriosis confined to the uterus alone.

[endo2]

I had a partial hysterectomy 7 years ago with Endo and Adenomyosis and a frozen pelvis due to the endo. I was great up until the last 3 years and slowly have gotten worse. The last six months has been hell. I am going back for surgery in a couple of weeks. The specialist is pretty sure the Endo is back. This surgery will be worse than the hysterectomy. They will need to dissect bowel, bladder etc to get to where they think the endo is. Looks like its on the bowel and pouch of douglas. Really don't want the surgery but have no choice due to the pain.