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Pain years later after hysterectomy Pain years later after hysterectomy

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Unread 01-07-2008, 01:47 PM
Pain years later after hysterectomy

Okay , this may sound way out there. However I am having some pain, similar to the sever cramping I used to get before my hysterectomy. I had my total hysterectomy in 2001 due to PCOS, Endo, polyps, and fibroids. I kept a small, quarter size portion of the cervix, no ovaries etc. There was some damage done to my bladder other organs due to the endo being out of the uterus as well. I am wondering if the endo could come back or flare up if it is/was still on other organs, I also am not on any hormones, nor have i been since three months post op. I don't want to call the doctor with just random phantom pains. But this time it is actually bothering me.

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Unread 01-07-2008, 06:06 PM
Pain years later after hysterectomy

Originally Posted by jojo_bear
am wondering if the endo could come back or flare up if it is/was still on other organs,
Unfortunately, there is no cure for endometriosis so yes, you can have endometriosis recurrance even without ovaries, HRT, or a uterus.

I would suggest keeping a pain journal. You might find ReliefInsite’s online pain diary helpful. Be as specific as you can regarding your pain, how it feels, what level it is, where you feel it, etc. This can help your doctor determine if endometriosis could indeed be the issue since there is no way to know for sure it is endometriosis without surgery.

In the meantime, you may want to learn all you can about endometriosis and also see if there might be an endometriosis specialist in your area. The more you know about endometriosis and the more knowledgeable your doctor is about endometrisois the better!

Based on personal experience and the experience of others I have read about here on the site and elsewhere, it is highly likely you will be looking at various tests (colonoscopy, ultrasound, CT scans, etc.) to rule out any other medical conditions that might be going on. You may end up seeing various specialists to try to pinpoint the exact cause of your pain.

I am seven years post hysterectomy and will be having endometriosis excision surgery later this week. We know endometriosis was left on my bowel walls and the various tests and specialists are all pointing back to endometriosis. Of course, until the endometriosis specialist gets a look inside, we won't know exactly what is going on but hopefully the surgery is benefitial!

I wish you all the best and hope you find support and information here in the Endometriosis Support forum! S
Unread 01-07-2008, 07:56 PM
Thank you

I want to say thank you for your response. I had a feeling that was the answer I was going to get. I have had off and on again pain every couple of months for years, but nothing like this bad before. I hate to go through all of this again, however the doctor did tell me when she operated, the endo was everywhere, It did damage to the bladder pretty bad and it was everywhere, I was in surgery for over five hours trying to remove it all and all of the other problems.
I will def. check out those sites you sent me. Thank you again.
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Unread 01-12-2008, 08:30 AM
Pain years later after hysterectomy

jojo bear, how did you manage without hrt? did you have aches and pains in your muscles and/or joints? I tried to be on no hrt for 5 months post op but i couldnt take the pains in my body. Now i am so afraid i'll get the endo back since i started on the estrogen.

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