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When a Hysterectomy Isn’t A Cure

I am pretty certain when I went in for my total hysterectomy three years ago, I thought that I was going in for my final surgery (barring family genetics eventually requiring my gallbladder to be removed). To be clear, I do not consider a hysterectomy a cure for endometriosis in any way, shape, or form but I was hoping for at least some permanent relief since we took it all. I would have even taken going back to a semi-normal life versus the full normal that existed before my diagnosis.

However, that is not how my story goes. I did find some relief after surgery. Not having periods was a huge plus. I still battled fibromyaliga and GI issues, that would later be diagnosed as Celiac disease but for awhile I was feeling better. Once we got my Celiac under control, I was able to start running again and I lost 30 lbs. Things were definitely looking up!

Then August 2010 arrived and all of the familiar pain of endometriosis returned. The cramps, bloating, and stabbing pains became a daily occurrence just like before. Not sure of what to do next, my doctor sent me to the Duke Center for Endometriosis Research and Care for another opinion. It was decided there that surgery was not an option due to scar tissue. We changed up my HRT and I got referred to a pain specialist.

Eight months later, simple pain management no longer works. I went back to my doctor and we pulled out all of my surgery reports and she examined my surgery pictures. Then a light bulb went off – Ovarian Remnant Syndrome (ORS).

At the time of my hysterectomy, both of my ovaries were bound in scar tissue and wrapped around my ureters (tube that carries urine from kidneys to the bladder). My left one, however, was enlarged almost to the point of competing with my uterus for size. The location and size made removing my ovary very difficult as the location was very delicate and could be easily damaged therefore making it a challenge to ensure that all of the ovarian tissue got removed.

I am now in the process of testing to confirm Ovarian Remnant Syndrome. The first step in testing involves checking hormone levels of FSH and estradiol. Hormones levels that do not match those of menopause can indicate functioning ovarian tissue. A second step includes having an MRI to confirm presence and location of ovarian tissue left behind. With the MRI, pre-treatment with Clomid will cause ovarian tissue to swell (as if it were in a state of ovulation) and make it easier to locate on the MRI.

After ORS is confirmed, there are three options: 1- pain management, 2- suppress the tissue by using a medication like Lupron, or 3- surgery to remove the tissue (which is the only way to permanent treat ORS).

My MRI is on July 18th to confirm and it is my guess that surgery will be scheduled shortly after. My 8th anniversary of my endometriosis will likely be spent preparing and/or recovering from my fifth surgery. So when someone tells you that a hysterectomy is a cure for endo, you can replay “not always.”

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5 comments

  1. Thank you for sharing your story. I haven’t heard of ORS. Unfortunately, I don’t know if I could retrieve anything from the time of my surgery in terms of “pictures” and GYN notes.
    I had both ovaries removed (uterus remains) in 1994; one was completely wrapped in endometrian tissue (inside as well as outside the ovary) and the other had a huge cyst. What was supposed to be laposcoptic (spelling) day surgery turned into major surgery and days in the hospital. During the ovarian removal, the GYN also did some endometrian tissue removal (my uterus was “glued” in place, there were adhesions on my colon).
    Because the uterus was left, I went on hormonal therapy. During which, I discovered that it was progestrone, not estrogen, that created my horrible cycles (by the time of surgery, I had about 2 symptom free days a month!). So, every 3 months, I would also take progesterone to cause a cycle. Gradually, I began to have periods even without the progesterone, with the frequency, length of time, and volume increasing.
    At that point, I had a D&C, a small polyp removed, and went off hormone therapy (after being on it for 9 years). I continue to have GI issues, including IBS for over 30 years (unfortunately, none of the elimination diets I’ve tried have noticably helped.) I often wonder if I should see a GYN about taking a look at what’s going on inside in terms of endometrian tissue, adhesions, etc. I certainly get what I call “phantom” ovary pains. And there were the additional cycles while taking estrogen/progesterone (spelling is probably off). I’m in pain everyday from the IBS; I suspect that older and newer adhesions contribute to the pain and bloating issues.
    Good luck! I hope you can find a solution to your health issues/concerns; one that leaves you feeling better and as pain free as possible. Thanks again for sharing your story.

  2. Antonia Guajardo

    I am glad that I got a chance to read this article. I am going in for a second surgery and gave a bit of thought about having them take out everything from inside so that I can feel better. Due to articles like this I am reconsidering…..

  3. Anyone have an info on new treatments for endometriosis? I had a hysterectomey in 2002 and have started having those old familiar pains, that are getting worse…don’t want another surgery and am afraid to go to the Dr. for fear that is what they will suggest

  4. I am 18 and have been battling Endometriosis. I have had surgeries, tried all sorts of medication, and right now I am having six months of Lurpon Depot. If this doesn’t work, i’m considering having a historectomy. Everyone says it’s too early, but i do not want to live the remaider of my life like this. Just don’t know what to do anymore…

  5. I have just been diagnosed with ORS. I have already had a hysterectomy, and one ovary removed ( well almost all of it). I am ready for everything to be out and move on with my life!!!! My concern is the side effects of HRT. Night sweats are a side effect…..breast cancer is another disease. Does anyone have any insight on ORS surgeries and post surgery HRT?

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