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Hope’s Story (Undiagnosed)

hopes-story-endometriosisToday, I am filled with guilt, embarrassment and frustration. It is a familiar place for me. I recently started a new job and had to call my boss at 6am to deliriously tell him I was “sick” and couldn’t make it in. By 9am, when I should have called my volunteer commitment to let them know the same, I was too overtaken by pain and hot flashes, followed by vomiting, diarrhea and extreme weakness and shivers.

I could barely walk to the next room to look for a heating pad, and putting it in the microwave seemed nearly impossible. For hours, I rolled around on the ground in so much pain, the only words I could say were, “God why?!”

Hours later, I am so confused about it. I barely know what just happened to me. Yet, I do–I just got my period. Is that what I am supposed to tell the supervisor of my volunteer position as to why I was a no-call, no-show? I feel so lonely.

I remember these feelings all too well, as my periods were always this way, save for the past year or so. I thought those painful experiences were over and that somehow my body must have changed over the years.

I just always figured it was normal and something I had to endure for a time in my life. I tried birth control pills, and they help somewhat, except that they make my mind spin 24/7. My choice had to be endure the pain once a month and be happy for 2-3 weeks, or be pain-free and completely crazy all the time.

I talked to a gynecologist recently, and she told me to try taking Tylenol a day before my period. Her reaction just enforced my idea that this must be normal.

Now, I guess my quest is to find health insurance so that I can seek out a gynecologist that will listen to me and take my pain seriously, and maybe finally have a diagnosis. Because although the physical pain is horrendous and disrupts my entire life, much emotional pain comes from this as well.

I am so grateful to have found this site, and it reminds me that I am never alone. I may feel so incredibly dark and hopeless sometimes–which is usually a result of hormones–but I know I am not hopeless. There is a purpose to my pain, even if it is only to help someone else through the same pain one day.

Hope
Pennsylvania
Submitted 09/27/2016

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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3 comments

  1. I feel like you just described exactly what I went through this past Friday. My period came a few days early, so I wasn’t able to start Ibuprofen leading up to it. I was on my way to the gym for morning cardio and ended up on the dressing room floor in the locker room, just crying and curled in a ball. I’ve been dealing with this for quite some time–the pain, hot flashes to cold and clammy shivers. I go in and out of consciousness from the pain and can barely muster enough strength to shuffle to the kitchen to warm up the heating pad (I keep swearing I’ll buy an electric one!). Finally went a saw a specialist and we’re trying hormone therapy (I haven’t been on the pill in about 6 years), plus I’ll be scheduling surgery soon…super nervous about it. Anyway, thanks for writing about this. Just know you’re not alone and thank you for helping me realize that I’m not alone in how I’m feeling <3

  2. I have endometriosis. Interested in connecting w Hope from
    Pennsylvania ans others in an online format to have support. I have none at home.

  3. I had a hysterectomy at age 31 from my endometriosis! I know this pain al too well and I couldn’t take it anymore! I am thankful for 3 beautiful children and decided to get it over with! It was the BEST decision I have EVER made! It isn’t as scary as it seems and I am a new person because of it! Good luck ladies!!!

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