Endometriosis

March is Endometriosis awareness month.

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“Endo what?” might be your first question. Endometriosis is not talked about much and like most chronic illnesses out there is commonly misunderstood. It is a discriminating illness that only effects woman of child baring age. Mayo Clinic describes Endo, “Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region. (However it can invade anywhere potentially occur anywhere.)

In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesion — abnormal tissue that binds organs together.” There are a total of five stages in Endo.

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It’s an autoimmune disorder, according to the autoimmune foundation of America. Girls whos mothers or other female family members who have endometriosis are seven times more likely to develop Endo. It is not the most comfortable topic to discuss, however these are the facts that dictate many women’s lives. It is a fairly common illness.The symptoms have a wide range and can have a devastating impact.

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Endometriosis is not just a painful period. It is difficult to diagnosis. Endo does not show up on CATSCANS, ultra sounds, or MRIs. The only way to know if one has endometriosis is surgery. There are limited treatment options available for women with endometriosis, the most popular one being birth control. On the other hand many girls have reactions to oral birth control this limits their treatment options even further. Some deal with the terrible symptoms, go into menopause, or try birth control injections.

Every female on my mothers side of my family has had endometriosis. I knew there was a chance I would have to deal with it, however it showed up years before expected. I had my fist ovarian cyst at nine years old, my period didn’t begin until four years later. Of course I encounter sever pain and other signs of Endo. About two years after my monthly began I discussed the option of doing exploratory surgery with an OBGY and my mom. I knew it was a long shot, I knew  could have symptoms and Endo not be present yet. But no one can be certain. Deciding to go through surgery is a gamble for any female who suspects having Endo.

I was anxious to say the least about my first surgery. They discovered a large cyst on my ovary which was leaking. All the scans had missed it (which is rare, but I’m different). If it had not been removed I could have lost a few organs including my bladder. They did not find endo but warned me I would need another laparoscopy down the road.

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I continued having  problems and other health issues. I tired oral birth control and had a reaction every time. I continued to have terrible periods and abdominal issues. I had a Gastro evaluation. Eventually I ended up back at an OVGYN. I distinctly recall the phone call that pushed me back into the OR. I was trying to explain to my doctor that I could not take the birth control she had prescribed. She told me point blank that I had two options: go into menopause or have another laproscopy done. I felt trapped. Facing a decision no nineteen year old girl should have to. I agreed to the surgery.

I did not love my surgeon … okay I disliked her. On the way to the OR I had an anxiety attack. In the OR I saw the instruments they were going to use. So yeah, I freaked out… who wouldn’t. She told one of the nurses to get me to shut up, so compassionate….not.

They discovered I have stage one Endo. Due to my past relationships with birth control and my complex medical history they put me on an injection, depo provera. Depo Provera is a steroid which pauses the cycle.  I hate Depo, but it’s something I know I have to do. The injection is extremely painful because it is a thick medication. I have a lot of GI symptoms with it, including loss of appetite. Right now this is the best option for me. I hold on to hope. Hope for better treatment.

Please help us to raise awareness!!  Have you or someone you know encounter Endo? How have you coped?

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