The doctor that referred me to the BC Women's Hospital was the first doctor I asked for a hysterectomy. I was about 25 or 26 years old.
He wanted to explore other options first. Not just because of my age, but because a hysterectomy does not cure endometriosis. At this point, we both knew that I had excruciating cycles with menorrhagia, but not the reason why. The reason why wouldn't even be speculated for another 5 years, when a gynecologist I saw in Lehighton, PA told me he suspected adenomyosis. Adenomyosis affects only the uterus, and a hysterectomy is the only definitive cure. It also includes taking tissue samples to examine for evidence of adenomyosis to confirm the diagnosis.
When I had my consultation with a surgeon at BC Women's, I learned that I had pelvic floor dysfunction, and my endometriosis was quite aggressive, despite my ovaries being almost non-existent on the ultrasound due to my hormone therapy treatment. Again, I asked about getting a hysterectomy because at night, I was often awakened by such severe pelvic pain, that I would have the uncontrollable urge to "bear down" as if I was giving birth, and there were times where I nearly blacked out, and/or vomited from the pain. The pain would also cause me to be delirious at times. Mostly, I can only recall not knowing where I was because I was disoriented. I was told that this was caused by the pelvic floor dysfunction I had, as my tight muscles would be spasming resulting in the pain. It made sense at the time, but after having surgery, continuing treatment, and doing physiotherapy, the pain only continued to get worse. By 2016/2017, the pain was constant.
I had my third surgery at that hospital in Vancouver, and I never fully recovered from it. My surgery was June 6th, 2014.
First, the post surgical pain was the worst I've ever felt. All the muscles in my neck, shoulders, and back were excruciatingly tight, and spasming. I was more exhausted. I tried over and over to return to my healthy regimen of eating a plant-based diet, and getting exercise regularly. The fatigue was too much. It lasted far beyond the 3 months it usually takes my post-op fatigue to resolve. In fact, the more time went by, the worse my fatigue became. I was also still having the intense uterine pain, despite being told that my uterus was fine. Adenomyosis can cause a uterus to look bulky, and have a "spongy" kind of feel when poked by medical instruments. I learned this watching a video on Youtube of a surgeon doing laparoscopic excision of endometriosis. However, adenomyosis is still easy to miss, since it's inside the uterine walls and invisible to someone looking at it from the outside in many cases.
I was prescribed counseling, a chronic pelvic pain workshop, and physiotherapy/rehab post op. The wonderful thing is that the costs of these treatments were covered by my medical plan in Canada. The bad news? I don't drive, as it is unsafe for me to do so, and it was a long trip from Abbotsford to Vancouver without any mode of transportation. The severe fatigue and memory loss I started suffering from immediately after my surgery meant that I couldn't safely use public transit alone. I had to ask family members if they could take me to my appointments, but they refused. For most of my Vancouver appointments such as my post-op follow up, I had to rely on friends only. All of which who lived out of town.
One friend drove down from Logan Lake, BC and took me to my 6 week post-op appointment.
One friend from Chilliwack took me a couple times as she was also a patient there. However, I ended up missing the workshop I was supposed to attend due to my incompetent brain fog, and not properly understanding when my appointment actually was.
Another friend from Langley took me to an appointment once or twice also. I remember getting hopelessly lost each time, and on the verge of tears due to the frustration of not being able to remember anything.
I had no choice but to drop out of the program. I simply couldn't keep asking friends to take me to these appointments when they had so much further to drive than my family did. I would offer gas money, and food, but not all my friends would take it. Some just did it out of the kindness of their hearts. It still amazes me that I have people like this in my life. Despite my poor memory, I always remember things like this because it means so much to me.
Since I dropped out of the program, I never got anything I needed. I tried paying out of pocket for local physiotherapy, but they didn't know how to treat PFD. In fact, I couldn't find a single physiotherapist or doctor in the Fraser Valley that did. Vancouver was my only option. So, instead, I just paid for therapy that only provided minimal relief.
My central nervous system became oversensitized as a result of untreated chronic pain. My rehabilitation program was supposed to help with this. More on this condition can be found here.
Basically, my central nervous system is cranked up to 11 and even slight touches or stimuli that's normally not painful becomes painful. Fibromyalgia is a good example of an illness that has central sensitization as part of what makes it so difficult to live with. Women with endometriosis are twice as likely to have fibromyalgia, and 100 times more likely to have Chronic Fatigue Syndrome according to this source.
Lastly, I greatly underestimated the emotional impact that living with an illness that causes severe chronic pain. This is why BC Women's Hospital offers it to patients with endometriosis. My PTSD was triggered by living in chronic pain for so long, and having to deal with most of it alone.
Endometriosis is a devastating illness in many ways. It's isolating, poorly understood, stigmatized and often met with disgust due to the fact that it's a menstrual disorder, and it causes hormone imbalances and infertility which can be devastating for many people who want to start a family some day.
A quick Google search with the words "Endometriosis" and "PTSD" included will bring up numerous blogs by women just like me who are dealing with complex PTSD as a result of being ill with endometriosis. There are currently no statistics showing the prevalence of such trauma amongst endo patients. I can tell you though, that nearly every woman I've spoken to who has the disease has also suffered from depression and/or anxiety due to the pain.
The image I've included in this week's post is of a Yellow Warbler carrying a yellow ribbon in flight. I chose this particular bird because of its colour. It's also a very stunning bird, one that I've encountered many times in the wild. Yellow is the official colour for endometriosis awareness.
The image depicts the desire to fly away from the pain, but the ribbon (symbolizing pain) is always being carried around with you. The ribbon also signifies strength to go on, despite the very real desire to get away from it all.