Does a hysterectomy make a difference?

[Han93]

Has anyone found long term benefits from having a hysterectomy to treat endometriosis?

Han x

[parleystopaz0e]

Hey Han, I can’t speak from personal experience but from what I’ve heard since endometriosis grows outside of the uterus it’s unlikely that a hysterectomy will resolve the symptoms. Even if you have a full hysterectomy - where the ovaries are also removed which will send you into an early menopause - you again are unlikely to get relief from the disease because the lesions produce their own oestrogen (as well as create their own blood and nerve supply, how evil!). It’s so complicated!

One thing that can be cured by a hysterectomy is adenomyosis because in that case the disease is within the uterus. And the only way to get some relief from endo is complete excision (not ablation) of the lesions / adhesions / endometriomas by a multi-disciplinary specialist team. I say 'some relief' because there’s still a small chance it could come back.

Hopefully someone else will share what they’ve gone through but in the meantime there are related posts on the right hand side of this page which might be helpful. Good luck!

[Han93 in reply to parleystopaz0e]

Thankyou so much for your response!

I have had an appointment with my Endo specialist recently and started Decapeptyl / Zoladex treatment. I did talk about the possibilities of a hysterectomy and he said that would be the last resort. I’ve previously had ablation and excision surgery - 7 months later back to hospital with unbearable pain.

It’s a long road isn’t it, thankyou again for your message x

[parleystopaz0e in reply to Han93]

Oh no, I’m sorry to hear your pain has come back so soon! I guess it could be from missed lesions or it’s adenomyosis. Have you had an MRI to check for the latter btw?

[Han93]

Thankyou 🫶🏽

No I haven’t had an MRI, certainly not recently! I think around in 2021 when I was initially diagnosed. My Endo specialist has put me back on the waiting list for surgery to “have a look at what’s going on” x

[Rachel40]

hey

I had a hysterectomy a couple of years ago and I still struggle with flares up and mobility. The pain is a lot less since I had the hysterectomy I will say that.. it didn’t cure me though and I’m back seeing my endo consultant as it’s getting worse again and really affecting my daily life

It’s a big decision and a big operation I don’t regret mine at all.. on my worst days now I think back to before and I’m thankful that it’s not like that anymore. It’s not a cure for everyone…for me it did improve it …

I’ve been seeing a physio who has been doing electro acupuncture and I find that really helpful

I hope you figure it out and I hope that it gets better for you x

[Han93 in reply to Rachel40]

Thankyou for your reply 🥹💜

I’m sorry to hear you’re still struggling 🥺 it affects so many aspects of life doesn’t it. Thanks for the acupuncture suggestion!

I’m on my third month of Decapeptyl injection & there has been some improvement with frequency & longevity of flare ups. I am under the impression it isn’t a long term solution though (& the menopausal hot flushes are something else!! Haha)

Han x