I didn't want to post this on my blog for several reasons. 1) My blog is about Germany, and I considered this a little off topic. 2) I would not call my issues "suffering" and my laparoscopy involved my doctor zapping away mere "tapioca flecks" of tissue (there are women who have to take narcotic pain killers and see a specialist to manage their pain and be functional and also women with such intense scarring their organs are permanently damaged. Thankfully that is not a battle I have to fight). For these reasons, I considered originally this post unwarranted.
However, I decided these two points were invalid for the following reason. 1) Access to affordable hormonal contraceptives is under attack in the United States and all women, especially those with gyn disease stand to suffer. I am having a happy, amazing time in Germany with relatively little pain and I credit that to my long-term use of hormonal birth control pills, the depo provera shot, and the mirena IUD. 2) Voices that spread awareness don't need to come from the catastrophic cases. Heck, any one can spread awareness. I encourage people interested in doing their own little part to spread Kristi An Rose's story, you can even share this post if you really want.
Endometriosis is a condition where cells that resemble the lining of the uterus grow outside of the uterus, normally in the pelvis. Every time a woman with endometriosis has a period, these cells respond like the normal endometrium and bleed. The inflammation caused by these cells can also result in bowel problems and bladder symptoms. It affects 5-10% of women.
No two women with the disease have the same story. Some women will have excruciating and chronic pain and only a few tiny lesions. Other women can be virtually asymptomatic and have massive scar tissue. Some women will respond to birth control, while others will require multiple surgeries, medically induced menopause, and other painful treatments. Some women will never find relief, despite all these efforts.
My symptoms started when I was in the middle of high school. Once I was put on the pill, the symptoms faded gradually, but they were always there. I've seen various doctors, but the E-word wasn't dropped until last spring. I had been in the hospital recently with a ruptured ovarian cyst and I was sent to the specialist for a follow-up. We were discussing my history and I confessed to the doctor that I had been reluctant to go to the ER, because the random and intense pain I felt from the rupture was not a pain I was unfamiliar with. "It's ok," I said, "These things really don't bother me, it hardly affects my life anymore. Plus my doctor said they were normal." He looked troubled, "Clearly they're normal for YOU. I understand that you're used to this, but is this not a way that a young woman should have to live her life." After a long conversation, the hospital's specialist in "women with complicated menstrual histories" was called and various tests were done. It was concluded that I should get surgery whenever I have the time. "Don't let anything stand in the way of your year in Germany," the doctor said to me on my way out.
He was right. Close friends have criticized me for my reliance on various hormonal birth control methods, because they don't understand what it feels like for me to be without them. Even though my time with him was brief, his understanding and willingness to listen to my concerns was a refreshing change of pace. I hope that when I am a doctor, I will have the same effect on my patients as he had on me.
You might be asking yourself right now, "So I've read all this, now what's the point?" There are two purposes for this post. The first is to women. If your period makes you feel more like a stabbing victim than a woman with cramps, that is not normal. Excessive menstrual flow is not normal. Painful bowel movements and painful urination, especially with your period, are not normal. Don't ever let someone tell you otherwise. Regardless of your situation, don't let someone call you a wimp (or a slut, in the case of Rush Limbaugh) for taking medication to lessen your pain.
My second point is to everyone else. I certainly don't want your pity, there are so many women out there that have it so much worse. Women with these concerns need to be taken seriously and I believe the only way for that to happen is through public discourse and awareness of gyn disease. People like Kristi An Rose deserve to have their voices heard and I owe it to them to do my part. I hope someday women with gyn symptoms and gyn disease won't feel shamed into silence and embarrassment.
It is an understatement to say my time in Germany is a dream come true. I am extremely happy that my medication has allowed me to have the normal quality of life you would expect for a young woman. I just wanted to take the time to honor the many women who don't have such luck.
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