chronic illness

We have a plan!

Friday’s doctors appointment was very enlightening! I feel very positive moving forward from this point which is a feeling that I haven’t had lately!

We went back through all of my surgical history (my file is crazy think – I’m surprised she doesn’t have to wheelbarrow it in!). We covered all of my symptoms. We looked a pictures from my hysterectomy and then a light bulb went off. She goes back through the surgery reports and pulls out her iPhone to pull up some information. She asked me if my pain seems to come in cycles. I told her that if I didn’t know better I would swear that I was still ovulating because once a month I get pain right around where my ovaries would be. And it clicked.

Ovarian Remnant Syndrome.

The basic description of ORS is when ovarian tissue is left behind after removal of the ovaries and function like ovaries secreting hormones as well as creating cysts. In my case, both of my ovaries were bound with scar tissue to my ureters (the tubes that carry urine from kidneys to bladder). My left ovary was swollen to almost the size of my uterus. Because of size and scar tissue, my doctor had to be very careful removing them as while she needed to be sure to get as much tissue as possible, she also had to be certain not to damage my ureters (which was a major reason my hysterectomy had to do be abdominally (open incision) versus laparoscopically). Because of these conditions, she believes its quite possible that tissue was left behind.

Here is our plan:

1- Test hormone levels (done on Friday): My FSH and estradiol levels should be that of a menopausal woman but if they come back in the normal range of a 29 year old that means there is most definitely something left behind.

2- Have an MRI to confirm the presence and location of ovarian tissue: I would be given a stimulant like Clomid to hyper-stimulate the tissue to make it apparent on the MRI for confirmation purposes. I’m not even going to imagine how uncomfortable that is going to be.

3- Make a decision: At this point I would have three options – 1) pain management and track tissue to make sure it doesn’t spread; 2) take a suppression drug like Lupron to keep the tissue from creating estrogen; or 3) have surgery to remove the tissue completely (which in my case would be an open incision requiring at least a 6 week recovery).

I’ve got some time before I have to make a decision since we still haven’t confirmed anything. And while I don’t care for any of the options really, the fact that we may finally have an answer to my continued pain gives me open. If I had to choose what I would do today, I would say surgery as I want to put all of this behind me and move on!

I should have the results of the blood work the beginning of next week! The wait will be tough especially as I’m in the middle of a flare and unfortunately my replacement IC meds are not working as well as we’d hoped and pain levels are pretty high. Thankfully my mom is in town for the week helping me take care of Abby! But I am holding onto hope at this point!

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7 comments on “We have a plan!

  1. Missy says:

    Well at least you are on your way to a diagnosis and possible treatment. This is great news!

  2. Suz B says:

    Yay for a plan! Fingers crossed!

  3. Ryan (The Woven Moments) says:

    Sometimes finding the diagnosis brings a relief of its own. Glad you know your path forward!

  4. FeliciaFibro says:

    I’m glad your doctor was able to piece it together and is confirming it multiple ways before moving forward. Good luck with that process, as well as making your decision.

  5. Emily Ruth says:

    That’s fantastic that you’ve finally got some answers and a few options, I’ll be praying for you x

  6. Dee Brainerd says:

    PLEASE research ORS….I have ORS…..multiple surgeries later, pain off the charts, no end in sight. It took forever to get diagnosed, it is reassuring to know that I’m not crazy though!!! They are trying to get me to take Lupron (don’t fall for it, it’s a terrible drug with HORRIBLE side effects, look it up!!). Good luck!!!

    • Jamee says:

      Both my doctor & I have spent a lot of hours researching! We have found some evidence with the MRI. I will definitely never EVER take Lupron again. I made that mistake once and will never do it again. I’d do 14 surgeries before taking Lupron (ok…I’m exaggerating but you get the picture). Thanks for the heads up though!


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