Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Gyno and EDS

Written by Katie. Posted in Ehlers-Danlos Appointments

Today I spent quite a while talking to my gynecologist.  I know it may be weird to some but I love my gynecologist.  He is in my top three doctors for the most kind, caring doctors I’ve ever seen (and as you know, I’ve seen a lot ;)

I made an appointment to see him after I returned from seeing Dr. Tinkle in Cincinnati.  One of Dr. Tinkle’s recommendations was to get on a second generation Progesterone birth control to see if it helps regulate my hormones and provides me with better joint stability.

I had told Dr. Tinkle that at the time of my period, it seems I get worse with pain, joint looseness, and POTS symptoms.  He said he hears that a lot, and that it made sense because there can be a definite hormonal influence on EDS (and POTS).  To quote from his book,

“It has been known that there is a hormonal influence on joint laxity.  The female hormones affect the ligaments at the cellular level altering the production of collagen and the cells that support it [Magnusson, 2007; Hansen, 2008].  Females generally are more lax than men which in part is due to the shape and form of the female body, musculature and types of activities in addition to the hormonal influence.  Some observe that their joints seem “looser” or more unstable just before their menstrual flow (periods) [Child, 1989; Friden, 2006].  Research looking into whether or not this monthly “looseness” makes the person more prone to injury at the same time has been contradictory. [Griffen, 2000]

While both female hormones affect collagen, it is more likely that progesterone and its analogues (similar chemical hormones) increase ligamentous laxity.  Medroxyprogesterone, the type of progesterone commonly found in DepoProvera, is a “true” progesterone and can increase joint hypermobility.  Similar progesterone’s made from testosterone (the male hormone), such as norethindrone or norgesterol, are thought to have less effect on ligaments.  If one takes an oral contraceptive pill, choosing the combination with either norethindrone or norgesterol may have less influence on joint laxity.”

Resources: “Hormonal Aspects of Hypermobility,” by Professor Howard Bird, from the Hypermobility Association, www.hypermobility.org

–Dr. Brad Tinkle, from Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Syndrome?
So today, I went to my gyno appointment armed with this information, and many other questions about family planning.  My doctor totally agreed with putting me on the pill, if for anything to make sure I do not get pregnant since that would not be good.  He put me back on Loestrin, which I had been on for 5 years up until April of 2010.  In April, I had gone off of the pill to start to try and have a family.  In May and June, a lot of my extreme problems started to happen.  In the back of my mind I always wondered if there could be a link between going off of the pill and my body starting to come “unglued,” or if this was just a coincidence?  What’s more interesting is that my gyno said Loestrin, the one I had been on, is one of the birth controls that has norethindrone, or a second generation progesterone that was recommended by Dr. Tinkle.  I would so love to be a part of a research study about this. 
My doctor said he wants me to mentally think of going back on the pill as a means to accomplish one goal and one goal only; to not get pregnant, and if other positive outcomes happen from going back on Loestrin than so be it.  We also talked about pregnancy and EDS and POTS.  My gyno also recognized a lot of the risks that accompany both disorders with pregnancy.  However, he said he would really love for me to talk everything over with a high risk pregnancy doctor before Brad and I make any final decisions.  He is going to set that appointment up for me, which is in Lansing so no traveling!  He said that after we discuss everything, and if we still decide not to have me get pregnant, my gyno, or the high risk doctor can also help us with other options such as surrogacy and the genetics of using my eggs.  I don’t know why, but I find all of this stuff so interesting. I say just give me a huge shot of testosterone and see what happens…Just kidding.  I think. 

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Comments (2)

  • Maureen Meyer

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    EDSer here who is struggling with gyno issues. Was wondering how that change in birth control effected your hypermobilty?

    Reply

    • Katie

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      Hi there! Sorry for the delayed response! For me, I did not notice much of a difference either way. However, the one thing it did for me was make things more predictable (when I felt better, when I flared up (right before period)), etc. This made birth control worth it in my opinion.

      Reply

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