Sunday, August 14, 2022
Home / Articles / Reflections / Living with an Illness / When a Hysterectomy Isn’t A Cure

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.”

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

Check Also

arlene's story endometriosis

Arlene’s Story (Endometriosis)

Hi, I am a stage 4 endometriosis survivor. As a young lady, I always suffered …


  1. phylor

    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. beth

    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. Alisha Meadows

    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. Tara

    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?

    • Becky

      I had my uterus out when I was 30, and then my ovaries out when I was 47. I have been using herbal Phytoestrogens which I have felt like they are a good fit for me. I have had alot of pain tho for the past 12 years and now my doctor is looking into this ORS. It makes alot of sense that this could be what is causing my issues.

    • Ilze

      I am 33 and facing my third ORS surgery this year. My first surgery was by the on-call doctor at the hospital, which I would not recommend for something as rare as this – most of the hospital staff had not heard of it. I spent more time convincing the doctor that yes, I most certainly did already have my ovary removed.
      My second surgery was with a specialist. He was confident that it would be my last surgery, so I was, too. We were both wrong.
      Now, I am about to have my third with another specialist in another city. He will not prescribe anything for pain in the meantime, arguing that I shouldn’t be in that much pain.
      Overall, you will have to fight. I had to threaten one doctor with a malpractice suit because he refused to believe what a CT scan showed.

      • FLGirl

        IIze–Who were the specialists that you saw? I am dealing with ORS right now and am seeing a specialist who’s recommending HRT instead of surgery. But everyone I’ve spoken to before has said that I should never have HRT. A previous doc gave me Lupron for 6 months with terrible results. It shrunk the cyst from the ORS but left me with debilitating joint pain. It’s just so hard to know what to do when no one agrees and my last surgery almost killed me due to adhesions/scar tissue and perforated bowel that caused sepsis.

  6. Joanie

    Hello! So I had an ovary removed in 2016 because it was the size of a grapefruit precancer we fast forward to 2019 where I underwent a c section that ended up ha big to be cut vertically because the cyst that was on the ovary grow when they didn’t think it would and it was the size of an orange at birth. I had regular periods afterwards after months of pushing the issue on two different drs they finally tested my hormones and had an ultrasound done and found that I had a remnant browning and it had precancerous cells and was the size of a lemon….this is at 7 months after removing the last ovary. So I repeated surgery 11 months later and then they took my uterus. Which that bill is way higher than the c section (I do not understand that). They have pushed for me to take hormones since day one but I have never had any side effects as in night sweets and moody swings. I did start having issues on bleeding after a certain position of sex. So I started estrogen cream. I still have episodes of bleeding….I haven’t told a dr yet I feel like I get blown off to much so I’m just rolling with it for now. But I have started having sharp pains just like I did before when I had an ovary. Really wondering if can have more than one grow back. If you have any insight please contact me!

Leave a Reply

Your email address will not be published. Required fields are marked *