Recurring Endometriosis Post-Hysterectomy
My endometriosis experience
I started having issues with my periods about a year after I got my first period. Like many others who suffer with endometriosis, my claims were dismissed. I had both family members and doctors stating that I was being dramatic about normal period pains or that I was just depressed and seeking attention.
I was lucky that my mother had dealt with endometriosis herself because this helped her to believe me. After seeing more than 10 specialists, I was diagnosed with endometriosis in 2006. I spent the following years trying so many treatments and medications that I lost count.
There were a few years where I was able to live a somewhat normal life due to being in a medication-induced menopause. My doctor was able to keep my body dormant and even reverse the bone density loss from the previous doctors. While this treatment was effective for a long time, it stopped being as effective as it was initially.
My decision to get a hysterectomy
I eventually got to a breaking point. The doctor who had worked wonders for me in the past had retired. This left me feeling at a loss. I made consultation appointments with multiple doctors prior to selecting a new doctor. These doctors looked at my extensive endometriosis-related medical history and knew the options were limited to treating my endometriosis.
Eventually, I made one of those impossible decisions. I chose to have a total hysterectomy with bilateral salpingo-oopherectomy in November of 2018. At the time, I was 29 years old and had no biological children. Despite this, I wanted to take this step to reduce the impact endometriosis had on my daily life.
For about two years after my hysterectomy, I did not have any endometriosis-related symptoms. Once I recovered from the surgery itself, I was good to go. It was so nice to not have endometriosis concerns as a high priority for the first time in 12 years.
Endometriosis can recur in terms of pain and adhesion growths. While my doctor cannot know for sure that I have had any regrowth, without having surgery again, all the signs point towards a recurrence of my endometriosis.
In a way, one would think I should have been prepared for my endometriosis to return after my hysterectomy. My endometriosis returned after I had laparoscopic surgery done. One can say I am not a lucky person!
Where I am now
Since the type of hysterectomy I had included the removal of my ovaries, I had to start hormone replacement therapy, HRT, after my surgery. First, we tried using a topical estrogen cream. This seemed to have no effect on me in any fashion. When that did not work, we switched to some oral HRTs. I have tried a variety of oral HRT already, ranging from a combination of norethindrone and estrogen, both at the same time, to just one or the other at a time.
Currently, I am working with my doctor to find an HRT option to help deal with my recurring endometriosis. In addition to my endometriosis symptoms recurring, I also find myself having some side effects of the hysterectomy, menopausal issues. I have struggled with some menopause symptoms such as vaginal dryness and reduced libido. My doctor has suggested seeking a consultation with another specialist to focus on balancing my specific hormones. If we are unable to get my abdominal pain under control, my doctor says I am looking at having another surgery.
My overall takeaway
Endometriosis can be an extremely painful condition. Sadly, it is a condition that does not have a specific cure. This should not be a reason to not seek treatment. Everybody responds differently to various treatments. Just because my endometriosis recurred after my hysterectomy, it does not mean everybody will experience the same thing. There could also be a much longer time between somebody else’s hysterectomy and the recurrence of their endometriosis. Recurrence is an important factor to consider when deciding on a surgical step to endometriosis treatment.
Have you ever experienced a "weird" symptom and wondered if it was endo related?