The long post about Endometriosis

About one and a half year ago I started to have cramps, not only just before my period but at the time of my ovulation as well. My period has always been very irregular, sometimes I’ve had heavy bleedings and back pain, sometimes almost no bleeding and no pain at all. But this was something different. I could wake up in the middle of the night, bathing in cold sweat with a fever and a pain as sharp as if someone stabbed me with a knife, over and over again. One time I fainted just by sitting up in bed and painkillers didn’t do anything.

Diagnosis and symptoms

I went to see a gynecologist who did an ultrasound and saw two cysts close to my left ovary. She said it looked like cysts from Endometriosis that incurs when the blood that should go out of your body instead goes into it (simplified version). To make sure she sent me to another clinic to do another ultrasound but they said the same thing. This was of course very scary, but the worst thing was that they told me there’s no cure. I started to research, and learned that Endometriosis isn’t a new disease even though I'd never heard of it before. Since women hasn’t exactly been prioritized in medicine almost no scientific research has been made until just recently and even though women of all times certainly have had Endometriosis it's been called cyclic pain, menstrual pain or hysteria. 

The most common symptoms are pain in the lower abdomen, pelvis or back, pain when peeing or pooping, pain during and after vaginal intercourse, bleeding between periods and difficulty getting pregnant. Plus long term exhaustion and tiredness, need to pee more frequently, bloating and mood changes. I’ve had almost all of these symptoms since the day I had my first period even though they’ve been coming and going and coming again.

The Pill

The gynecologist told me to start taking the Pill, since no ovulation quite often means less pain. She said that it sometimes gets better after a pregnancy and hinted that if I wanted to have a baby it was a good idea to have one pretty soon. Well, let’s just say that even though being pregnant seems pretty cool (like in Alien from outer space cool) I don’t think I’m ready for babies quite yet. And what does she have to do with that anyway?

The problem with Endo, as it’s often shortened, is to me quite clear – that no one knows anything about it. One in ten women have Endo and the average time to get a diagnosis is eight years. Eight years! The Pill is often the only thing prescribed even though loads of women including myself doesn’t feel very good taking it. But you take it anyway, cause the pain’s just not worth it. There’s so many things with Endo that upsets me that the actual disease is sometimes the least of them.

My story

Fortunately the Pill lessened my pains and even though my body’s been constantly tired and my immune system’s been at the bottom I’ve been trying to live my life without putting too much thought into that. This summer I did another ultrasound in London and the gynecologist said everything looked normal, the cysts were probably just two enlarged follicles; you are healthy. I’m still not sure what she meant by that since I still experience most of the Endo symptoms, though I'm aware of and grateful that I have a somewhat mild version of the disease.

Today I feel okay, I still have some pain, I still have irregular bleedings now and then even though I’m on the Pill. My body’s often tired, my immune system still sucks. My stomach is almost always bloated and sometimes I have to pee several times an hour. On the other hand the Pill’s making everything seem quite bland, like nothing’s as good or as bad as it used to be and on top of that the Pill that I’m on isn’t recommended to be on for much longer since it can cause blood clots. Endo is such a jungle and the fact that you have to be your own doctor, fighting for what you think your body needs, makes it so much worse. 

Do you have or know anyone with Endometriosis? What's your experience?

Learn more about Endo here:
https://www.endometriosis-uk.org (English)
http://endometriosforum.se/ (Swedish)