Endometriosis story

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

Doctor knew I had endometriosis never told me!

by Vienna
(Montreal, Canada)

I had very bad cramps when I first got my period at 12 years old. I would spend my lunch breaks bent over on the floor of the girls bathroom. My periods were heavy and lasted up at 12 days. But I was young, and thought cramps were "normal". In my teen years my period shortened to 8-9 days and I no longer had cramps.

At 17 I had sex for the first time. It hurt for months, and always hurts in certain positions (girl on top), but I assumed it was because I was "small" and my boyfriend was "big". Eventually sex didn't hurt as long as I avoided being on top.

After suffering awful side effects of hormonal birth control, I asked my gyno for a copper IUD. It immediately made my periods heavier and caused a lot of pelvic pain, which was "normal" for a 19 year who had never had children. I figured it was the price to pay to avoid the side effects of the Pill, and the monthly cramps outweighed the daily symptoms of the Pill.

Then I started getting these incredibly sharp shooting pains in my rectum just before I had to pass gas or during bowel movements. I searched in vain on the internet for a possible cause. I chalked it up to either trapped gas or IBS. It took a couple years before I made the connection that it usually happened around the time before or during my period (but not every month). But how could pain in my rectum be related to getting my period? It made no sense.

My gyno continued to tell me any worstening pain I had was caused by the IUD and prescribed pain meds (that I never took).

In 2009 (I was 22), I traveled and got my period 2 weeks early. It stopped for a few days then started again and lasted a month, stopped a few days and had another month of bleeding. I saw a doctor at a clinic that ran every test possible and found nothing. My gyno also examined me. He said the bleeding was stress from travelling.

Well 2 years later (2011, 24 years old) I am in excruciating pain, lying on the floor, screaming and crying, everytime I open my mouth I vomit. At the ER they preformed an ultrasound and found cysts on both my ovaries. They asked me to come back in a month to "make sure they are gone".

A month later the left cyst is still present, they ask me to come back in two months for an MRI. After the MRI I am told not to worry because the cyst is filled with blood, and therefor is likely not cancer. I am told to return in 6 more months for a second MRI. (In the meantime my pelvc pain is misdiagnosed as PID and I am treated with strong antibiotics, which caused a peptic ulcer that still won't heal).

This time a new doctor gives me the results; the cyst only got bigger. She can't believe the previous doctor made me do all this since I have "textbook endometriosis" and a large endometrioma that should have been surgically removed when they first discovered it 10 months earlier!

I finally decide to find the best of the best: the top specialist in the country on the disease. He will be doing my surgery in 6 months. (I'm now 25 years old). The worst part? In changing doctors I ask the office of my old gyno for a copy of my medical file. In 2009 (I was 22) when I had the bleeding he said was just travel-stress... my old gyno actually wrote "pelvic exam = ? what to do, endometrioma", and he never said ANYTHING about it to me!

If I had known I would have had surgery years sooner, I would have taken out the IUD immediately and tried hormonal birth control again to suppress the disease. Now I have chronic pelvic pain that's only getting worst, a huge cyst that requires surgical removal, and probably infertility.

I'm angry at my old gyno for never telling me I had endometriosis and an ovarian cyst. I'm angry the hospital made me keep going back for more tests when the result was clear from the start and misleading me into thinking I was going to be okay.

I'm angry at myself for not having put the dots together sooner. In hindsight it seems obvious I had endometriosis,I wish I had been aware. Its extremely frusterating I've never had any illness in my entire life besides a cold here and there.

I am healthy, I eat well, I exercise, I do everything right. I am constantly told I am a hypochondriac... only to find out I have something worst than I had ever imagined, compounded by the sudden inflicting of ulcers and pain... it feels like everything is falling apart and every doctor is incompetent.

Due to my doctor appointments and upcoming surgery (and health insurance reasons) I had to turn down a dream-job offer in another city and cancel my plans to volunteer in south america for a year. I guess this is what they call life....

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