What Happens After You've Had A Hysterectomy With Oophorectomy, And Your Endometriosis Still Comes Back? | MyEndometriosisTeam

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What Happens After You've Had A Hysterectomy With Oophorectomy, And Your Endometriosis Still Comes Back?
A MyEndometriosisTeam Member asked a question 💭

I'm 32, so I'm on a transdermal estradiol patch. I think it could've caused the recurrence, but I have to be on hormones because of my age. It took me 17 years to get this diagnosis, and I'm stage IV-- it was all over my ovaries when they removed them. I'm afraid of how bad it must be if it came back so quickly.

Is the next step excision surgery? How effective is that?

posted August 3, 2023
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A MyEndometriosisTeam Member

Here's hoping for both of us! Yeah, the hysterectomy was a relief because it is pretty hard to get ovarian, cervical, or uterine cancer when I don't have those organs. But otherwise...meh

posted August 8, 2023
A MyEndometriosisTeam Member

Yep! That's was part of my reasoning too. Lol.

posted August 9, 2023
A MyEndometriosisTeam Member

That's what I was hoping the hysterectomy would do - buy me more time. It gave me emotional peace of mind cause I never wanted kids, but that's it.
Good! I hope the specialist has some better answers for you too!
Thank you!! I'm hoping I can see the one in NY sometime soon and maybe get some answers myself.

posted August 5, 2023
A MyEndometriosisTeam Member

My friend was about to go the one ovary route as well, although fortunately, hers resolved after the hysterectomy. I was hoping that the hysterectomy would buy me some more time to think and plan what next steps are, but it came back pretty fast. I finally saw a doctor today who knows more about endometriosis than any other gynecologist I've ever been to and decided to take me off of estrogen temporarily and put me back on norethindrone until I see a specialist in Chicago. I'm so sorry to hear that you're still in pain. It's so hard to do anything when your body is going HEY this hurts!

posted August 4, 2023
A MyEndometriosisTeam Member

That's kind of where I'm at - except I still have 1 ovary and don't take any hormonal pills or patches cause of that. I know that since the hysterectomy, I feel I've been trying to recover from the pain and trauma the hysterectomy caused PLUS the endo still growing at the same pace. I don't believe it slowed endo growth at all, but there's no way to prove that until someone opens me back up. I'm hoping to see or even video visit an endo specialist in NY (I'm in PA). I know after the hysterectomy the doc said the endo had reached to at least my lower bowels, but not sure how far past that. That was about 8 years ago and I'm still at the same pain level and then some as after 1 month after the hysterectomy...like someone pushed a button during surgery and that button is now broken and stuck there.

posted August 4, 2023

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