September 17 will mark 10 years since I was diagnosed with endometriosis. In that time, I have undergone five surgeries and countless hormone treatments (including various birth control pills, Lupron shots, and medications like Femera) in efforts to control the endometriosis and its side effects.
As I just mentioned, almost all of the current treatments available for endometriosis patients involve hormones. The side effects of these medications include nausea, weight gain, hot flashes, vaginal dryness, acne, facial hair, bone loss, and depression. These are just a handful of the possibilities. Sometimes the side effects of the treatments last much longer than the course of medication itself.
Shortly after my diagnosis, I took a three-month course of the drug Depot Lupron which was originally created for prostate cancer but is now used for endometriosis and to suppress ovulation when preparing for IVF. The side effects I encountered during the three months I was on the drug where awful. I experienced a significant amount of weight gain and depression as well as nausea, headaches, and bleeding despite add-back therapy. There was a marked change in my moods and there were moments, especially towards the end of my treatments, that I felt like a completely different person. I was extremely irritable. I couldn’t concentrate and was constantly forgetting things. The side effects lingered long after the drug was out of my system. Before Lupron, my cycles were like clockwork. Never the textbook 28 days but regular enough where I could always mark a calendar. After Lupron, they ranged from 35-60 days which caused problems while we were trying to conceive. Can I prove that my infertility issues were a direct result of the Lupron? No. Am I certain that it played some sort of role in altering my cycles ad ovulation? Absolutely.
In addition to the hormone treatments available to treat endometriosis, other treatment options include surgery. Endometriosis can only be officially diagnosed through surgery, typically a laparascopy. In addition to the diagnostic surgery, patients often have to experience multiple surgeries throughout their lifetimes in order to control pain and the progress of the disease. Roughly 45% of patients experience a reoccurence of symptoms within the first year after surgery (webmd). Obviously surgery cannot be performed on a regular basis to control the disease and repeat surgeries create risks of their own such as adhesions that can cause pain, infertility, and bowel obstructions. Obviously, the more surgeries that are performed, the greater the risks.
I am at the portion of my journey with endometriosis where I know feel like I am chasing the side effects of my endometriosis treatments as much as (if not more) the disease itself . If you are a new reader, last summer I had to undergo an emergency surgery to repair a total bowel obstruction caused by adhesions that resulted from a surgery to remove endometriosis (that had returned after a total hysterectomy ). We are now suspicious that more scar tissue is forming and possibly creating an environment for another blockage to form. We have done all of the hormonal treatments possible (even the experimental ones). I had a total hysterectomy. We avoided HRT. The disease continues to return yet we have no options to treat it. Surgery, unless absolutely necessary, is out of the question as I am already battling the effects of previous surgeries and do not want to complicate the situation even further.
Unfortunately, I know that I am not alone in my situation.
Women across the globe feel completely out of options as there are not enough treatments available that can provide lasting relief. Currently the cause of endometriosis is unknown which makes finding a cure difficult and there is just not enough funding and research being performed to move in the right direction. This is why doing everything we can to raise awareness and educate the public is so very important.
Please link up your posts for Week 1 of Blogging for Endometriosis using the linky below! After linking up please visit at least the to links in front of you to help spread the love and support!