Living with Endometriosis

March is not only women’s history month, it is also Endometriosis Awareness Month. Didn’t know that? Don’t worry, no one without endometriosis does, because not many people living without the disease even know what it is, hell we don’t really completely understand it either.

The basic gist is that endometriosis is a disease in which tissue similar to the endometrium (same tissue we shed during our periods) is found outside the uterus.Now, the tissue is not just floating around in the body, it is attaching itself and growing on other organs and tissues in the body.. in very rare cases it has been found in the brain, but often times the tissue is found on the exterior of the uterus, fallopian tubes, ovaries, bladder, and rectum.

This disease affects 1 in 10 women and the average wait for a diagnosis is 7 years. The reason for such a long diagnosis is two-fold. First, lack of education and the idea that a period is supposed to be painful, or that women are dramatic, and it’s all in your head. The other reason is that often times symptoms of endometriosis can be very similar to other issues, such as IBS (irritable bowel syndrome), urinary disorders, or even polycystic ovarian syndrome. There is also no real treatment for endometriosis. Birth control, or other hormonal therapies, and even pregnancy (for those who are ready/already trying) can help but sometimes cause other issues.

I received my diagnosis at the age of 27, but, I began having symptoms as soon as my period began at the age of 13. Excruciatingly painful periods, horrible stomach issues, shooting pains, vomiting, nausea, etc, and when I was 16 I was put on birth control to help with some of the cramps, etc. although, in all honesty, it didn’t help much. When I was in my 20’s I decided to go off of birth control and quickly found out that not only was that a bad idea… it was a really bad idea. Almost immediately I began having constant, often times debilitating pain, irregular bleeding, intense pain and bleeding during sex and a constant barrage of ovarian cysts which when they would burst, often landed me in the hospital.

I saw 3 doctors in a 2-year span and finally, one of them said, ‘This is not normal’. She immediately scheduled me for a laparoscopic surgery where she diagnosed my severe endometriosis, she also alerted me to the fact that the majority of my endometrium was ‘microscopic’ and she was unable to remove a lot of the tissue. Soon after the surgery I also learned that I struggle from infertility, I won’t get into the details on that right now but I will say that it is a devastating thing to hear you will most likely not be able to have children naturally.

Endometriosis takes many options away from you. The ability to choose whether or not to have children naturally, the ability to plan ahead as so often you are hit with pain out of the blue, and the ability to lead the sex life you want to as many women with the disease also suffer from bleeding, and painful sex. It is a horrible disease and one that we should be talking about so much more.

I live with this disease every day, and it’s a struggle, but I would be a liar to say it hasn’t made me stronger. Yes, there are days where I lay in bed with a heating pad, doubled over in pain, crying about how unfair it is. But there are also days when I throw up my middle finger and say “Fuck you Endometriosis – this is MY life”. I will figure out how to live my best life, and I am determined to be a voice for others who live with this disease, especially those who have yet to receive their diagnosis.

Please remember that each woman has a different journey with endometriosis, and I am sharing my personal one with you and will continue to do so in the future. For more information about endometriosis or if you think you could have endo, please visit:

The Endometriosis Foundation of America

The Endometriosis Association

 

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