Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Living with constant pain

by Angel
(Dallas, Texas)

The first run in I had with endometriosis was at age 14. I collapsed into the fetal position screaming in a sudden onset of pain. I crawled to the bathroom and proceeded to have violent diarrhea while simultaneously vomiting into the trash can.

My mom found me and took me to the ER thinking that my appendix was bursting. The doctors gave me pain killers, anti nausea medication, and bags of fluids. That was it. No idea of what was wrong, just oh well, we don't know what's wrong so here are a small number of narcotic pain killers, now go away.

I went to my regular doctor who was sympathetic and believed me about my pain levels (I had been seeing him for years) but try as he might, he wasn't able to come up with any kind of diagnosis or solution. Since the pain mostly came with my cycle, he thought oral contraceptives might help.

I got on those and swapped types of oral contraceptives a number of times during the next 10 years or so but none of them really helped.

As I got older, the pain with each cycle became more and more severe and frequent. I also started manifesting other symptoms such as blood in my stool and severe pain during other times of the month.

Even with years of experience and a much raised threshold for pain the symptoms grow in severity every month. I missed a lot of time in school over this and have lost jobs because of this, being stuck in bed literally unable to move without screaming.

I went to work one day while suffering because I really needed the money, but I spent half of the day in the bathroom biting down on my rolled up t-shirt to keep from screaming.

I am literally useless during my cycle. The day before I start I always know because I will have debilitating pain. During my cycle I have the same extreme pain for the first 1-3 days. After that, it thankfully becomes a more subtle pain that I can endure and even work through most of the time if I have to.

In addition to the pain, I have extremely heavy bleeding. I HAVE to use a tampon and a pad with maximum absorbency and I'm still running to the bathroom every hour on the hour or I will bleed through. ((Got into trouble in high school for leaving classes when MALE teachers would not give me permission to go to the bathroom.

If you have teens suffering with this PLEASE support them and work something out with your schools nurse so your kids don't have to go through all of the trouble I got into for simply needing to change feminine hygiene products. I missed so many classes having to go to alternate education as punishment for going to the bathroom without permission. It's simply unacceptable how we're treating our teen daughters.

In addition to THAT, as I got older I started having more bowel symptoms including constipation that usually leads to severe diarrhoea and blood constantly in my stool during my cycle.

I have long since lost my health insurance and can not afford to replace it, so all forms of treatment have stopped for me. No contraceptives, no pain killers, no check ups to monitor the progression of my condition, nothing.

In the worst throws of pain I have contemplated ending my life rather than living another 20+ years with this increasing pain waiting for menopause. My husband and I have considered getting pregnant earlier than we really wanted to, it just seems to be one of the only proven consistent means of controlling this condition. Though we haven't used contraceptives in about 3 years and still haven't gotten pregnant, so I'm starting to think I may also have infertility problems.

The pain associated with this condition is NO JOKE. It can be extremely severe. I literally fractured my foot and didn't even realize it until my husband did a day later because it was so swollen and black and blue. The pain from that didn't even register in my brain because it was so minor in comparison.

We need more awareness of this condition. With so many sufferers, we need better methods of treatment and pain management. I'm so sick and tired of my uterus controlling my entire life.

I'm exhausted all of the time. I don't go out and do things with friends because I'm always afraid I'll have an episode and either ruin other people's good time or have to leave early. Over time I've lost most of my friends too. I just don't feel like I can go anywhere, and eventually people stopped coming over.

I completely isolate myself during my cycle for days at a time every month because I constantly have tears streaming down my face and sometimes I can't help but scream. I don't want to inflict those images or sounds on the people who do still care about me.

There's just nothing positive in my life except my husband who is my best friend, but I feel like such a burden to him. He has to baby me for at least a week out of every month. Just getting up to get myself a glass of water puts me through so much pain.

I just wish I had some kind of hope- Like, maybe if I can save up enough money to afford _____ treatment, I could maybe find some relief. But, I've tried everything. The pain is just crippling.

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