Endometriosis story

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

I have no idea what this unbearable pain is?

by Rachel
(Asheville, NC )

I've been experiencing extreme fatigue and muscle soreness in my legs, knees, upper thighs and what I think is the sciatic nerve, and my back, neck and shoulders.

I'm having two types of pain - a dull, achey pain down lower that is distinctly period pains, and then another sharp and stabbing pain around my belly button and towards the left side that has only come a few times in the past few months.

I've also just had a heaviness and soreness of my vagina and that whole area, which normally only happens on my period. I've been having cold sweats, weakness, and recent constipation :/ I also suffer from severe anxiety and depression, which I am taking meds for.

Ever since I started my period at twelve and a half years old, right after second semester of seventh grade started, I've had medium-heavy bleeding and extreme pain. I missed two week's worth of school in seventh grade, three and a half in eight grade, and that was just school I missed when I was actually bleeding. I had stomach aches, back pain and was tired and sleepy all of the time.

When I started high school, things really seemed to get bad. I would normally take 12-16 200mg tablets of ibuprofen a day, depending on when I got out of bed and when I went to sleep. I would stay home and lie on the couch all day with a heating pad and a glass of water.

I can remember sometimes waking up in the middle of the night and moving out to the living room couch, because somehow sitting on the cool fabric instead of my hot bed made it better. Sometimes I would wake up and couldn't move, other times I was sobbing on the couch. Once when my parents weren't home, I started saying out loud things like "Jesus help me," lol, just praying that the pain would go away.

Often times my cycles were accompanied with dizziness and nausea - I'd grab a bowl and put it on the floor next to me because I was convinced I was going to puke.

For the first two years, I had just assumed it was normal pain, and went on with the heavy bleeding and awful cramping. I think I overdosed on ibuprofen more than once because three hours after taking 800mg of it, the pain returned. I went to the doctor, and she prescribed me a medicine called Mefenamic acid, a pill that was apparently hard to get. It didn't help.

But then one afternoon changed it all. We were driving to pick up my violin from a repair shop, and suddenly I just had this gut wrenching pain while sitting in the car. It had kinda been there the whole day, but I had brushed it off. But it came and was unbearable.

I got home and immediately started looking up "abdominal pain" and similar stuff on google. I was convinced I had OD on ibuprofen, but then I stumbled across the term endometriosis. After reading about it, I was filled with such a sense of relief - it explained all of my symptoms.

While on vacation a week later for spring break, I talked to my mom. She told me that she has it, as does my grandma, who had a hysterectomy after having two kids. My grandma on my dad's side also has uterine cancer!

My mom didn't really do anything. Two weeks after vacation we went to the doctor because I was feeling just a general malaise, extreme fatigue, cramping all day long, cold sweats, and dizziness when I stood, walked down the hallway, or was in the shower that had caused me to faint once.

The doctor did some blood tests and told me to go to a gynecologist after learning the Mefenamic acid hadn't worked, because it very well could be endometriosis, since we had a family history and my symptoms were similar.

That doctor's appointment was a week ago. We still haven't heard anything back, and my mom has been meaning to schedule an appointment with an OB/GYN. I'm really worried about what to do, as I am COMPLETELY terrified and against a pelvic exam, transvaginal ultrasound, or anything else like that, since I'm 14 and a virgin (even putting a tampon in hurts...).

Honestly, at this point I'd rather just have the surgery to diagnose it and get rid of it for the time being, but I'm not sure if my doctors will want to do that because I am so young, and will vehemently, if necessary, refuse a pelvic exam... I'm just at a loss and don't want to have to deal with this and miss even more school.

Does this sound like endometriosis? feedback appreciated :) x

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