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
Thursday, April 28, 2016
Wednesday, March 9, 2016
Goodbye Uterus; Hello Endometriosis Awareness Month
Well, this post has been 10 long years in the making. Ten years ago, in December 2006, just before my 21st birthday, I had my first abdominal surgery. I had symptoms of an autoimmune disease - I was diagnosed with Crohn's Disease, Psoriasis and Psoriatic Arthritis in the last six months. I lost twenty pounds, and my doctors started to say the dreaded C word - cancer. But I had something less deadly in mind.
Sure enough, after my abdominal surgery, I was diagnosed with endometriosis and all of my symptoms cleared up. I was only told about endo on my uterosacral ligament, and my peritoneal lining. In 2013, my second endo surgery, I was told that they had done extensive work on my intestines in 2006. In 2013, they also found ulcers or endo on the outside of my intestines and on both ovaries. The films are being sent to my GI for review, and I imagine my GI will want to stand in on the hysterectomy.
The heavy bleeding, severe pain and migraines started when I was 15. I was given multiple types of birth control. My journals from 2002, when I was 15, mention break-through bleeding, and the severe associated symptoms. Currently, I'm in a similar position. Currently, much like 2002 to 2006, the birth control helps control the heavy bleeding only. They can't stop my periods, the pain or the migraines. The symptoms are so severe, that they feel like a Crohn's flare, and I end up in the ER.
There's only one way to stop the uterine spasms. I'm meeting with my GYN next week to schedule my partial hysterectomy.
I didn't think I would be so emotional about the loss of my uterus. I don't have children, and I've decided not to have biological children - they'd have almost a 100% chance of inheriting an autoimmune disease. But I feel crushed. I feel like less of a woman. I feel like the weight is too much to bear. And no amount of logical reasoning can save me. I am, after all, losing the main organ that allows me to identify as a woman, and with it, my ability to have children. At thirty. It's been a long ten years, but nothing could've prepared me for this.
Much love to my endo and hyster sisters,
Alison
Sure enough, after my abdominal surgery, I was diagnosed with endometriosis and all of my symptoms cleared up. I was only told about endo on my uterosacral ligament, and my peritoneal lining. In 2013, my second endo surgery, I was told that they had done extensive work on my intestines in 2006. In 2013, they also found ulcers or endo on the outside of my intestines and on both ovaries. The films are being sent to my GI for review, and I imagine my GI will want to stand in on the hysterectomy.
The heavy bleeding, severe pain and migraines started when I was 15. I was given multiple types of birth control. My journals from 2002, when I was 15, mention break-through bleeding, and the severe associated symptoms. Currently, I'm in a similar position. Currently, much like 2002 to 2006, the birth control helps control the heavy bleeding only. They can't stop my periods, the pain or the migraines. The symptoms are so severe, that they feel like a Crohn's flare, and I end up in the ER.
There's only one way to stop the uterine spasms. I'm meeting with my GYN next week to schedule my partial hysterectomy.
I didn't think I would be so emotional about the loss of my uterus. I don't have children, and I've decided not to have biological children - they'd have almost a 100% chance of inheriting an autoimmune disease. But I feel crushed. I feel like less of a woman. I feel like the weight is too much to bear. And no amount of logical reasoning can save me. I am, after all, losing the main organ that allows me to identify as a woman, and with it, my ability to have children. At thirty. It's been a long ten years, but nothing could've prepared me for this.
Much love to my endo and hyster sisters,
Alison
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