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Johanna’s Story (Fibromyalgia, May-Thurner Syndrome)

Johanna's Story (Fibromyalgia and May Turner Syndrome) My name is Johanna, I am a 36 year old who has been living with various health issues my entire life. I was born with an immune deficiency called hypogammaglobulinemia. With this disorder my immune system does not work properly and I can get really sick very easily and if I catch a bacterial disease the doctors would have to watch me very closely in order to make sure I survived.

Throughout my childhood I would go in and out of remission. When I was 11 years old I went into remission and luckily I have not come back out of remission but I am still affected by the disorder. As an adult now I am still fighting with daily health issues. I have suffered with polycystic ovaries which made my menstrual irregular without hormone treatment and it has made it difficult not only to get pregnant but to carry the pregnancy to full term. I am currently dealing with full blown fibromyalgia which causes me to be tired all the time, my entire body aches, I get headaches all the time, and am irritable due to constant hurting.

My second child was born in January of 2012. Everything seemed to be doing just fine until I woke up the morning of October 11, 2012. In a five hour time frame from one feeding with my son to the next I suddenly could not walk and my left leg was 10 times the size of my right leg. My husband took me to the ER and they stated after some testing that I had developed a DVT (deep vein thrombosis) due to the birth control pill even though I had been on the pill since I was 17 except when I was trying to get pregnant. The hospital told me that I need to go home, take the blood thinner they were prescribing, follow up with my doctor, and try not to walk around (like that could happen when you had an almost five years old and a nine month old at home).

After a week of no changes and a lot of pain I was fortunate enough to talk with a friend of mine from high school who happens to be a vascular surgeon. She saw me right away and determined that I did not have a DVT, I had a syndrome called May-Thurner syndrome. It affects women in their 30’s or 40’s and it is where veins collapse and cause blockage, not a clot causing the blockage. After having surgery for the condition I now have three stents in my abdomen holding open my veins. If it was not for my friend I would have possibly lost my leg because of the doctors in the ER just assuming that it was one thing because it presented that way and not looking further into why this could have happen. My entire life I have been dodging death and I look forward to continuing to dodge it until I am a very old lady. Living with chronic and constant pain is very difficult and unless you are someone also dealing with it people do not understand. I choose not to let my various diseases and syndrome define who I am, because I am me.

Submitted 10/02/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. JoAnn

    Thank you for sharing your story. You are so strong and inspirational. Keep fighting!!!!

  2. Brittany

    I also have fibromyalgia (from a young age) and was diagnosed with May-Thurner syndrome. I also get cysts on my ovaries but they are hemorrhagic cysts not polycystic. Keep up the good fight!

    • Clara

      Brittany, have you ever heard of d-ribose? Please see my comment below.

  3. katie

    Thank you for sharing your story Johanna. Chronic health issues are definitely a constant battle.
    I hope you don’t mind my asking, but after you had the surgery for your
    Stents did the doctors tell you no more birth control pills? I just had a scan for may
    Thurners syndrome because first one and now both of my legs swell when sitting
    Or standing. I absolutely need a bcp with an anti androgen to keep my sesitivitu to
    And levels of testosterone in check. I don’t know what ill do if they tell me bcp is
    No longer an option.
    Thank you again for sharing your story

  4. Clara

    Dear, please research d-ribose for fibro in Google. It is effective treatment for both fibro and chronic fatigue. It is totally safe as it is a nutritional supplement. I assure you it really works. There are many brands , give it a try. You won’t regret!

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