Dear American government, Rush Limbaugh and President Obama,
My name is Jessie and I have Endometriosis. I have battled with it since I was 18 and it runs in my family. I watched as both my biological mother and foster mother struggled with this disease. Both of them had hysterectomies in their mid 30s.
I won’t bore you with my incredibly long history with Endometriosis, but if you can see the image that I posted here, it’s what my abdomen looked like after my surgery October 15th, 2010. I’m still bruised and the scars are still prominent. I will tell you what I had to go through to get the surgery that I desperately needed.
Endometriosis is a very underfunded disease. It is not viewed as a real disease by the medical boards. The best treatments for the disease are not covered by insurance because they are viewed as “experimental”. There are two treatments that are covered by insurance. 1. DNCs, which in most cases makes the disease worse because it leaves behind scar tissue, which the disease feeds off of and 2. birth control. I’ve watched over the years as my birth control went from $25 to $90 a MONTH (with insurance). I’ve been on birth control since I was 14 because the doctors wanted to make sure I was doing what I needed to do just in case I did end up with Endometriosis. I was not properly educated on what it did and how I should take it because I had a Catholic school upbringing and parents who didn’t want to talk about sex. The hormones in birth control can help reduce the size of the endometrial legions as well as help with the pain during the menstrual. I have two biological sisters who thankfully did not end up with the disease, but they do suffer from other female oriented medical problems.
I was in stage 4 of the disease by the time I was 21 and suffered from adenomyosis. I was diagnosed when I was 23. I was devastated. I always knew, but I didn’t know how bad it was. On top of all of this, my uterus was intro flexed due to the legions. There are very few specialist in this country for my disease and I’ve seen almost all of them. After I found out that the surgery was 30k with a 19k deposit (since it’s not covered by insurance) I didn’t know what to do. I immediately started contacting clinics all over the country seeing if anyone was doing a case study. Doctors with this specialty are fed by money. Its really hard to find a specialist who actually CARES about the person they are treating.
Three months of no responses and I gave up. What else could I do? May hit and I got the greatest phone call of my life. The National Institutes of Heath was doing a case study. At the end of the study, surgery. I went through the process of being accepted. I was told that 80% of women who submitted were rejected, so I was really nervous. I got the paperwork a few weeks late saying all my blood work was clean and that I had passed. I had to stop birth control for three months so that there was no trace of hormones in my body before going into the study. That was a really tough three months, but nothing compared to what I was about to go through.
The first six weeks were the hardest. Blood draws twice a week. A blood test that was an hour and a half where they introduced the stress hormone into my body every 15 minutes and took more blood from me than I knew I had. A uterine biopsy that was hands down the most painful thing I’ve been through in my life. Two pain tests. The surgery.
One of the aspects of the case study was looking at the pain women with Endometriosis deal with on a daily basis. Endometriosis really messes with the nervous system and results in pain that isn’t supposed to be there. The video of my pain test was presented in front of a conference about Endometriosis. I feel pain all the time. It got the point where it was just part of my daily life. As far as I know, I will always feel this way. I was told from the beginning that the surgery may not alleviate my pain. I guess I was just a little more hopeful. One of my biggest enemies is the pain scale. I can’t accurately gauge my pain because its always there. Pain killers don’t help, not even the big boys.
Another aspect of the study, the part I was most excited about, was about stem cells in menstrual blood. My stems cells grew so well that they froze them and wrote a paper on them! So neat. If they start using them instead of fetal stem cells, I’m taking full credit for it. *flex*
Surgery time came. One of the diamond and sapphire parts of the laser broke off into my abdomen, which was pretty funny. They found it before they sewed me up. I woke up from surgery, not because I was ready to, but because I was in so much pain. They upped my dosage of meds three times and I passed out again. I ended up back in the hospital the next day because of the amount of pain I was in. Turns out that because of my screwed up nervous system my body was just going haywire. Nothing helped. I just had to… deal with it.
It took me a month to recover from my surgery. A few more months passed and there was no improvement in my pain, so they put in an IUD (which was also incredibly painful), which has helped with the pain. I have good months and bad months.
I’m telling you this story because even with ALLL of this, everything I’ve been through, I’m probably still facing a hysterectomy when I’m older. I’m 26 now. The only known “cure” to Endometriosis is having children. Endo causes infertility and makes it very difficult for women to conceive. I’m also scared out of my mind to have children because having a girl would be highly irresponsible of me. It also doesn’t work 100% of the time. Both my biological and foster mothers had multiple children. I also have to get tested for cancer often. One of my biggest fears is getting ovarian cancer. Eighty percent of women with Ovarian cancer also have Endometriosis. Endo is linked to Ovarian and Brain cancer.
The absolute only thing I can do right now is continue a hormone treatment and hope it slows down the progression of the disease. I’m sharing this information with you and the world today because I am an advocate of women going to their yearly doctor visits. Because of the stigma, discomfort, ridiculous price and misinformation women receive about the OBGYN, they put off going to the doctor, WHICH NEEDS TO STOP. I want to be an advocate for women who have Endometriosis and give them hope, but in a country that belittles women’s health and treats us like second class citizens, what hope can I give them?
You have no idea what it’s like to live with this. You just feel alone. No one will ever understand. It runs your life.
Stay the fuck out of our birth control. It’s none of your business. Stop the war on women’s health.
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