It's the last time. The last time I have to drive to the pharmacy to pick up my birth control refill, because they refused to ship it before I ran out. The last time I have break through bleeding and extreme pain for missing one day of birth control. The last time I have to eat potato chips for lunch because my uterus feels like it's trying to escape my body, Alien style...
This struggle is ludicrous. There needs to be a separate classification for hormonal therapy that is not being used as birth control. The 7 to 14 day severe pain and heavy - sometimes life threatening - bleeding started when I was 15, along with migraines which could last anywhere from 2 to 14 days. I have been fighting with doctors and pharmacists for ten years, and before that, my mom fought with my doctors. I've been put on depo-provera, depo-luperon, and multiple "birth control" pills. It took ten years, from 2000 to 2010, to get my endometriosis and migraines under control, and then, of course, my body would override the treatments. My first endometriosis surgery was in 2006. They found Grade 1 (lowest grade) endometriosis on my utero-sacral ligament (the one that holds your uterus in place), in the space behind my uterus, and, presumably, on my intestines. This was also the first time I had a true Crohn's flare - I dropped from a healthy 160 to 145, had severe vomiting and diarrhea, etc. I looked sick. Every month, I was checked for pregnancy, pelvic inflammatory disease, and I had multiple pap smears and intravaginal ultrasounds, and, I had my first colonoscopy to check for Crohn's. If you read other entries, I have a rare type of Crohn's that is not in the terminal ileum (the gateway between your small and large intestine, which can be viewed by a colonoscopy). My Crohn's plaques are present throughout my entire small intestine, and, apparently, doctors can't get into my small intestine by colonoscopy.
Continuing, I went into remission after the surgery in 2006, which lasted about 6 months, before the severe endometriosis symptoms returned. I was told in 2013, for the first time, that the doctors did "extensive work" on my intestines in 2006. Apparently, diffuse Crohn's disease can first present as inflammation on the outside of the intestines, which is also how early endometriosis presents in the abdomen. I was able to manage my symptoms, on and off, until 2011. In 2011, the uncontrollable spotting and long painful periods and migraines returned. I dropped body mass, while sleeping on the couch for most of the day. In 2012, after my back surgery, the symptoms intensified, leading to a full flare up in May of 2013. The migraines were present everyday until August 2013, after my second endometriosis surgery, where they found endometriosis in the same spots as my first surgery, plus the outside of my left ovary (fixed), the inside of my right ovary (unfixed), and multiple serious adhesions between my bowels and my abdominal lining, including attached to my sciatic nerve. This time, I did not go into a full remission.
I had surgery in June 2014 to remove my appendix and remove the dermoid cyst from my right ovary. Afterwards, I was sent to the GI clinic, where my incredible IBD specialist tested me for everything possibly related to my symptoms, finally landing on diffuse Crohn's disease in Sept 2015.
But, this isn't about Crohn's. For the last 15 years, if I do not have stable hormonal therapy, I suffer intense pain, migraines, and possibly life threatening bleeding. Today, after going to the pharmacy to pick up my birth control "early," I went to the bathroom, changed my (heavy) tampon, and walked outside to call my primary. I was out there about 15 minutes, and I felt faint - and I felt another large clot dropped. I bled through a heavy tampon in 15-20 minutes. Luckily, the bleeding slowed down long enough for me to get home. And, luckily, I know how to stay hydrated during these episodes. I took two pills, and, hopefully, the symptoms will stop tomorrow.
This is the last time. The last menstrual cycle. The end of fertility. A finality I can use to avoid awkward conversations about whether or not I can really have children, or if I want to.
But this will not be the last surgery for endometriosis. Monday, I will lose my uterus and my fallopian tubes, possibly more, possibly sections of my intestines. In the future, I will lose both ovaries, be monitored for abdominal cancers, and have repeated surgeries for endometriosis in my abdomen. There is no cure for Crohn's or endometriosis. These combined diseases exacerbate each other through abdominal inflammation. Even without the menstrual cycles, I will fight the migraines and endometriosis for the rest of my life. But, at least I won't have to fight for birth control for myself.
We need to reclassify hormonal therapy so that patients can receive it like any other medication. The majority of my medications are far more risky/dangerous than birth control, with the exception of Tylenol. There is NO reason females with these issues should have to suffer because of restrictions on birth control. And I will continue to fight for them, while they fight the disease.
~Alison
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