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Christine’s Story (Endometriosis, Idiopathic Hypersomnia)

Christine's Story (Endometriosis and Idiopathic Hypersomnia)Hello. I was first diagnosed with endometriosis when I was 19. I struggled with the pain for two years before being diagnosed. I have been truly blessed with an amazing doctor that I believe in and who believes in me too. I have had five surgeries since my diagnosis. I have good days but more bad days. I have tried to make the most of it and not let it ruin my life.

Over the years I have missed out on a lot because the pain was more than I could handle. There are still days that the pain is intense but I fight through it so I can continue to live my life. Recently, I have also been diagnosed with a rare disease called idiopathic hypersomnia.

Like me, I’m sure you’re saying, “what the heck is that?!” I have been researching it and it is a neurological disorder that causes extreme daytime sleepiness among many other symptoms. It’s rare and has little public awareness. There is currently no FDA approved treatment for it. It’s lifelong disease with no cure…as of yet! My goal is to make the world aware of it. I just need FLAGC to designate a colored ribbon to this disease…any suggestions?

God Bless

Submitted 10/30/2013

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. Ruby

    I guess I will start by sharing my story. I suffered all through my teens years with painful periods and was always told I had no pain tolerance. I was fortunate enough to have a mother that believed me over the doctors. As a kid I broke my arm and doctors refused to xray cause I wasn’t crying. If it was broke I would surely be crying. Several weeks later they found that my arm had been broken and had to rebreak it as it had already started healing wrong. So my mother knew I could tolerate pain. To this day that irks me, cause I only had doctors listen when I was 22 and had symptoms of colon cancer. Finally after tons of testing the only thing they found was bilateral cysts. The following lap diagnosed me with stage four endo with bowel involvement. Recently I was finally diagnosed with colo-rectal endo, which I suspect has been there all along and my colo-recto Dr agrees as the endo found there was in the same location as my non-cancerous mass 12 years earlier. In 2006 I was also diagnosed Non-REM narcolepsy aka idiopathic hypersomnia. There are meds for us, though FDA has not specifically approved them for us. Sort of like lupron is approved for prostate cancer and they use it for endo. Provigil, Ritalin, and Adderall are all meds I’ve been prescribed for IH (idiopathic hypersomnia). Most important is getting a sleep schedule and sticking to it. Avoid caffeine and really do so if you start meds. When I break from my sleep schedule I have a hard time getting back to a pattern. As hypersomnia suffers can have bouts of insomnia just as insomnia suffers can have bouts of hypersomnia. I do hope you find some relief and feel free to email if you want. Your the first person I’ve met that suffer both endometriosis and IH. I do have other health issues, but those are the ones that interfer with day to day life the most for me

  2. Courtney

    I just googled “endometriosis and idiopathic hypersomnia” and came across this blog. I was diagnosed with endometriosis in April 2012 after my daughter was born.I was then diagnosed with IH in DEC 2012..I just wanted to let you girls know that your not alone..Im actually surprised that there are at least 2 other women with the same exact issue as me!

  3. Tracey

    I also have endo & IH. I was diagnosed with endo in 2000 & just diagnosed with IH a couple of months ago. I’ve had 12 laparoscopies to remove endo & 11 other surgeries (laparotomy, d&c, leep, etc.) to remove benign tumors from my ovaries, remove polyps from my uterus, etc.), all in the last 14 years (I’m only 34 years old) so I know how you feel but please don’t let these diseases win (it doesn’t sound like you are!). I’ve carried guilt with me for years for all kinds of things related to these two diseases; in too much pain at times to have sex, may not be able to get pregnant again, short term memory is now shot from so many rounds of Lupron, after working since the day I turned 16 in 2013 it all just became too much and I stopped working, sleeping for hours upon hours, having to explain why “I don’t feel like going out tonight”, etc., etc., etc. The list could go on and on. It’s a natural reaction to feel guilt but if you can, don’t and/or don’t let it affect you too much. You can’t help that you have these two diseases and you shouldn’t have to feel guilt like I have and you shouldn’t have to justify anything to people. You aren’t lazy. You aren’t crazy. You have to work harder than most of the population to do the things you want to do and that should be recognized and celebrated! Btw, I LOVE your ribbon idea! Take care and I hope you live your days around YOUR health and well-being 🙂

  4. Devonne Johnson

    I have endometriosis and was also recently diagnosed with IH. I’m curious to know how many others have both of these chronic diseases and what have they found for relief.

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