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How Many Doctors Does It Take?

When I was 15 I was “diagnosed” with endo by my GYN at the time. She diagnosed me based off the fact that my grandmother and mother also had endo, as well as my pain symptoms at such a young age of menstruating. Unlucky for me, she never included this in my medical records. The next 15 years was me fighting for myself, then giving up. Fighting again once the pain got worse, Then giving up. I had seen dozens of doctors who kept sending me to a specialist for this and a specialist for that.

I’ve had colonoscopies, endoscopies, thyroid tests etc. I have been misdiagnosed with Crohn’s, Ulcerative Colitis, Diabetes, Thyroid disease. You name it, someone has pinned it on me. No matter what doctor on that given day was telling me I had, I never believed it. Deep down, when we are in pain, we know what’s wrong. I knew when someone looked hard enough and believed the symptoms I had were from the Endometriosis I was “diagnosed” with when I was 15, I would feel more free.

When it comes to the pain associated with endometriosis, I thought it was normal. When I started to understand that the other people who menstruated in my life could live a normal life while on their periods, I was angry. Anger is the first emotion I associated with my cycle and, unfortunately, is an emotion that has never left me since. Now that I’ve been bleeding for over 15 years and have what I believe to be PTSD from my cycle, the pain has gone from a 5 to a 10. After advocating for myself, I was finally put on a birth control that I was told I could “skip my periods with”. My doctor at the time told me this was the solution to my problem and that I should be pain free moving forward. Sounds great right? …

Wrong…

The pain changed. All of a sudden it was unpredictable, loud, sneaky, and relentless. Joint pain, back pain, bloating, stabbing pain in my ribs, cramps out of no where, followed by hours in the restroom. I could go on but most of you already know. This is the part that people with endo avoid talking about. To us, this is normal, as f**ked up as that is – but to the rest of the world, it takes the squinty eyed listener a moment to process.

Once I started to find people who experienced what I experienced I clung to them. Hanging on every recourse and validating word they were willing to share with me. I would sigh with relief to my self, “I am not making this up”. I’m thankful to those who have opened up to me and shared with me their worst moments with this disease.

I am thankful for the folks who pushed me to advocate for myself. Without them, I would not be where I am now, fiercely advocating for others who feel the need to be quiet like we all have at some point in this journey.

I’ve recently been diagnosed with Adenomyosis on top of my Endometriosis, which has been a hard pill to swallow. I’m going in for surgery in a matter of weeks and hope to come out with a uterus… but time will tell.

I learned that if I screamed long enough, someone would listen.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Endo Warrior moderator
    7 months ago

    Thank you for sharing your story. I am so sorry to hear about your struggles, which sadly sound so familiar. It is infuriating how long doctors dismiss our pain and I recognise your feelings of anger. I hated my uterus for what it did to me, and I was so happy when I had my hysterectomy. I hope that your surgery is successful and that you are able to keep your uterus – and be pain free after!

    Here is an article with more stories of women who had their pain ignored by health professionals, as you say: it’s good to know you’re not alone.

    https://endometriosis.net/living/ignored-pain/

    Christina (team member)

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