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Where Has This Community Been?

I am grateful to see that after a 20 year struggle with endometriosis, there is finally a community where this is talked about, and that women are not alone in their battle. I unfortunately was. I started my first period 20 years ago when I was 15. I was in pain but from everything I had studied and everything everyone told me, this was normal. What wasn’t normal was the amount of bleeding and the days on my period and the fact that each period started to become more painful then the first. My mom started to notice there were problems when I would lay on the bathroom floor curled in a ball with a heating pad vomiting from pain. We decided it was time I see a doctor, and like any 16 year old female, I didn’t want a strange man poking around down there, so we went to a female. Her response was that this is normal and I just had a low tolerance to pain. We didn’t know any different since I had never seriously injured myself and had nothing to compare it to, until I was 17.

The ride of treating endo begins

When I was 17 I was involved in a bad car accident. Fractured clavicle, dislocated knee, bruised ribs, etc. I was banged up bad but still wasn’t in even a fraction of the pain I felt when on a period. So when I was 17, I had an extremely bad flare up. This time I ended up in the ER. They ran a whole bunch of tests and my blood pressure was through the roof from pain but they couldn’t figure out why. My mom finally talked me into seeing her gyno. He immediately said he thought I had endometriosis, started me on birth control and scheduled a laparoscopy while explaining everything to me. Had my first ever surgery at 18 and then we started the seasonal birth control, had another surgery at 20 and another one within 6 months of that. At that point we started with the experimental drugs, the depo shot which made me gain 60 lbs in 3 months (seriously unhealthy) we tried the Lupron (made me crazy and have hot flashes) we tried acupuncture, we did everything. Finally I found a hormone that worked for me.

No where to turn

It wasn’t smooth sailing all the time, stress would trigger flare ups and trying to explain what’s wrong and that you have to go to the ER because you had a period would cause people to be mean. The comments about me making it up for attention, just to get off work, get out of school, etc etc. There was no community, no one to talk to other then my doctor (who was absolutely amazing) and my mom who didn’t fully understand. I pored myself into research. I learned as much as I possibly could and how to manage my flare ups. I did an extremely good job until last year. I finally found someone I wanted to have a kid with and now I’m back in the boat dealing with infertility. My doctor who has been by my side through all the trials has retired.

Thankful for this community

So now I’m at it again with fertility drugs that make all the symptoms return ten fold. I am now stuck between suffering to try to be a mom or letting my dream go for my own sanity and health. I wanted to tell my story because the battle with endo is the loneliest battle and I wanted other women to know you are not alone. I am thankful for this community and the fact that other young women won’t have to try to scrape up what little research they can like I had to 20 years ago.

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

  • Keri Wiginton moderator
    10 months ago

    Thank you so much for this story and for joining the community! Your experience rings so true for me. I ended up at the ER when I was 16 (back in the ’90s) and they first thought it was appendicitis and later said “oh, you’re just ovulating.” No mention of endometriosis or any other condition, just that my cramps were bad. A doctor also told me I probably had a low tolerance to pain and to just take some ibuprofen. It wasn’t until AFTER college that someone thought about endometriosis, and that was only after I brought it up.

  • Jessie Madrigal moderator
    11 months ago

    Thank you for sharing your story @cece, sounds like you have been through a lot. Sharing your story will certainly help others, that’s why we do what we do. I also began experiencing endometriosis-related symptoms at a very early age, and ended up in hospital when I was 12. Just like you, my parents were completely lost seeing me in so much pain every month…. also just like you my specialist – and the man responsible for giving me some of my life back after two surgeries- is also retiring. I hope you find a great doctor and more importantly, some relief. It must be really hard to have endometriosis while also being a mother. Again, thank you for being so open and honest – Jessie (team member)

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