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Reoccurrence of symptoms after hysterectomy

A MyEndometriosisTeam Member asked a question 💭
Federal Way, WA

7 years ago I got super sick one day after I was having sharp, electric shock like pains in the region of my left ovary. It took over a year of me being sick on and off and generally not feeling good before I found a gyno that believed it could have something to do with my ovaries and possible endo. I had surgery and had to have a complete hysterectomy as they found stage 4 endometriosis. It was on my ovaries, appendix and part of my small intestine. I’ve been living pain-free for the past six… read more

January 3
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MyEndometriosisTeam

Can endometriosis symptoms return after a hysterectomy, even years later?

Unfortunately, yes. Your experience mirrors what many others have gone through. Even after a total hysterectomy, endometriosis can return, especially when you're on HRT. Studies show that about 21.6 percent of people experience severe endometriosis Show Full Answer

Can endometriosis symptoms return after a hysterectomy, even years later?

Unfortunately, yes. Your experience mirrors what many others have gone through. Even after a total hysterectomy, endometriosis can return, especially when you're on HRT. Studies show that about 21.6 percent of people experience severe endometriosis pain again after 37 months or more following hysterectomy.

You're absolutely right that imaging like MRIs don't always detect endometriosis tissue. A MyEndometriosisTeam member shared: "I'm four years post-radical hysterectomy. I just had endometriosis excision surgery with a specialist, and it was found in three areas."

Another member described a similar situation: "I had a hysterectomy in 2014, I exhausted all treatments. Nothing was working and since then, I haven't had pain but lately, it seems I do." Given your symptoms are most intense with intestinal movement and your history of endometriosis on your intestines, it's understandable you're concerned about recurrence. While seeing a gastroenterologist could help rule out other issues, you might also consider:

- Seeking a second opinion from an endometriosis specialist who performs excision surgery
- Discussing whether exploratory surgery might be warranted given your history and symptoms
- Asking about temporarily stopping or adjusting HRT to see if symptoms improve

Many members have found that advocating for themselves and sometimes finding a different doctor led to better outcomes. Trust your instincts about your body—you know your history best.

January 3
A MyEndometriosisTeam Member

Yup mine came back return to sender! Die hysterectomy after 12 years misdiagnosed from family drs, gi, urologist, neurologist, and back again. I found a truly wonderful dr that did several surgeries for me as well as my right ovary finally removed when a cyst made it unable for me to walk after growing for a few months. It’s been 2 years since that and it feels like returned again, painful period -like cramping and bowel/bladder issues which you can have alongside endo but I don’t believe one comes without the other. I also don’t believe MRI can show endo? insist on internal ultrasound

January 12
A MyEndometriosisTeam Member

I'm in the same boat. Resumption of symptoms several years after my hysterectomy and HRT. As much as I don't love the idea, my doc had no issues going in surgically to take a look around. I think a second opinion may make total sense for you (as stated above), or get a verbal from your doctor of what you're going to try (and for how long) before considering a surgical looksee.

January 11

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