Developing Endometriosis after a Hysterectomy

Posted by king75 @king75, Nov 16, 2020

Hi, I am a 44 woman who had a hysterectomy (uterus, cervix, and most of the fallopian tubes) in September 2019. 5 weeks later I had to have another surgery for infection that had developed and spread throughout my abdominal cavity. I have been having a lot of pain and diareha the last few months. Thought is was being caused by ovarian cysts. Had surgery the other night to remove my ovaries and remaining fallopian tubes. During surgery it was discovered that I had endometriosis which was on my ovaries and other places. Anyway, I never had Endometriosis before having a hysterectomy. Why would I get it after? This was never mentioned to me. Did the hysterectomy cause it? I am confused , concerned and a little scared as to why this happened and what the future holds as I have been told that it can come back.
Has anyone else gone through this?

Interested in more discussions like this? Go to the Women's Health group.

@king75 Welcome to Mayo Clinic Connect. You have discovered that you have endometriosis after multiple surgeries related to complications of hysterectomy surgery. During the most recent surgery you were told that you have endometriosis and you are wondering if your original hysterectomy caused endometriosis, as you were unaware that you had endometriosis prior to surgery.

You’ll notice that I added your question to the Fertility & Reproductive Health group, along with the Women’s Health group. I did this so you could connect with members like, @sandytoes14 @contentandwell @naturegirl5 @airey2 @cherelle, in the Women’s Health group and members like, @phoenixzip @loren12 @jamorris9, in the Fertility & Reproductive Health group.

Below I have linked past related discussions. You may want to scroll through the past comments.

– What do you want to know about endometriosis?: https://connect.mayoclinic.org/discussion/what-do-you-want-to-know-about-endometriosis/

– Problems After Hysterectomy: https://connect.mayoclinic.org/discussion/abdominal-pain-and-cramps-after-hysterectomy/

May I ask what your surgeon(s) and/or provider(s) have said about your requiring multiple surgeries and the recent development of endometriosis?

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I am not a medical professional but I do suffer from endometriosis. The sad part about endo is to my knowledge there is no known exact cause. It just shows up out of nowhere. Prior to me being diagnosed with it I had very normal periods. They came like clockwork. I could set my watch by it. I have always had bad cramps and heavy periods which do come with endo, but even when my endo is not active I have that. Things that have helped me manage it have been surgery, pregnancy, and birth control. Again, to my knowledge, there really isn’t an exact cause let alone an end all be all cure. I wish there was but nope. I’d be curious to learn what all you find out through your investigating. Keep us posted!

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@erikas

@king75 Welcome to Mayo Clinic Connect. You have discovered that you have endometriosis after multiple surgeries related to complications of hysterectomy surgery. During the most recent surgery you were told that you have endometriosis and you are wondering if your original hysterectomy caused endometriosis, as you were unaware that you had endometriosis prior to surgery.

You’ll notice that I added your question to the Fertility & Reproductive Health group, along with the Women’s Health group. I did this so you could connect with members like, @sandytoes14 @contentandwell @naturegirl5 @airey2 @cherelle, in the Women’s Health group and members like, @phoenixzip @loren12 @jamorris9, in the Fertility & Reproductive Health group.

Below I have linked past related discussions. You may want to scroll through the past comments.

– What do you want to know about endometriosis?: https://connect.mayoclinic.org/discussion/what-do-you-want-to-know-about-endometriosis/

– Problems After Hysterectomy: https://connect.mayoclinic.org/discussion/abdominal-pain-and-cramps-after-hysterectomy/

May I ask what your surgeon(s) and/or provider(s) have said about your requiring multiple surgeries and the recent development of endometriosis?

Jump to this post

I just had the surgery Saturday night. The surgery was to remove my ovaries and remainder of my fallopian tubes. It was thought that I had ovarian cysts which were causing the pain. When I woke up from the surgery I was briefly told by my Dr. that my ovaries were removed and that I had endometriosis on both ovaries, in my abdomen and I think on my bladder. That is the only discussion I have had with my doctor following my surgery. I am waiting for a follow up appointment. I Don't have any details, or any understanding of what I am facing. Kind of in the dark right now.

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@phoenixzip

I am not a medical professional but I do suffer from endometriosis. The sad part about endo is to my knowledge there is no known exact cause. It just shows up out of nowhere. Prior to me being diagnosed with it I had very normal periods. They came like clockwork. I could set my watch by it. I have always had bad cramps and heavy periods which do come with endo, but even when my endo is not active I have that. Things that have helped me manage it have been surgery, pregnancy, and birth control. Again, to my knowledge, there really isn’t an exact cause let alone an end all be all cure. I wish there was but nope. I’d be curious to learn what all you find out through your investigating. Keep us posted!

Jump to this post

There was never any mention of endometriosis when I had my hysterectomy last year, nor when I had surgery a month later for an infection that had developed from the hysterectomy surgery. I am kind of in the dark right now with no details or answers until I have a follow up appointment with my Dr.

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@king75 with so many questions in your mind, I am sure you are eager for your follow up appointment with your doctor. Have you thought to make a list of your questions/concerns? When is your appointment?

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@amandajro

@king75 with so many questions in your mind, I am sure you are eager for your follow up appointment with your doctor. Have you thought to make a list of your questions/concerns? When is your appointment?

Jump to this post

I will be contacting the office tomorrow to make my appointment. I am also waiting to get paperwork from my employer that will need to be completed by my Dr.

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@king75

There was never any mention of endometriosis when I had my hysterectomy last year, nor when I had surgery a month later for an infection that had developed from the hysterectomy surgery. I am kind of in the dark right now with no details or answers until I have a follow up appointment with my Dr.

Jump to this post

I don’t believe hysterectomies cause endo. And endo is funny when it decides to show itself. So you may not have had any present at the time of your hysterectomy. I’ve had 3 endo surgeries and have lost one of my ovaries to endo. I can tell you endo is a pain. Because you never know when it’s going to hit or not and how aggressive it will be or not. So I understand the frustration…..believe me. I wonder all the time where it came from but there is no clear answer. Keep us posted on what your doc says at your follow up. Always want to learn more!

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I was 26yrs old when I had my total hysterectomy I had it done in 3 separate surgeries because first doc just removed my uterus then I grew massive cysts on one overy he removed that then a few weeks later he went in again and removed everything else. I have been living in constant pain in my pelvic area for so long and every time I go to a doc they dont know why i have pain and then others say it's called "headache in the vagina" I'm like no it's not if u call it that it's more like a migraine. Just today I had cramps so bad it brought me to the ground and i couldnt get up and walk so i been in bed in a fetal position all day i called a new obgyn and the nurse told me that if the pain is so bad to go to the er but i really dont wanna do that cause they dont do anything besides put me on more meds and send me home. When I had my hysterectomy the reason was because I had alot of heavy bleeding that was just awful I had very very large babies and I grow cysts alot the doc called my uterus a very angry uterus lol. But ya that's what I been living with for 10yrs

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I thought a total hysterectomy resolved endometriosis because it was caused by retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body.

I had terrible endometriosis that was resolved by total hysterectomy in my 40s. I had no symptoms after that.

But I just read article on Mayo's site about endometriosis, and it appears that Endometrial cell may develop in multiple ways.
https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661
Have you checked into other possible causes, maybe start with a primary care provider instead of OB/GYN to talk about what else could cause same symptoms. Doubled over in bed with bad cramps might be gallbladder. How about kidney stones?

Have you requested a ultrasound or other scans to make sure there is not something else going on.

Laurie

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