Looking Back on Two Years since My Excision Surgery
It’s been almost two years since my excision surgery. It was performed by one of the top endometriosis surgeons in the UK. I was immensely lucky to benefit from the free healthcare system in my country. Getting me to that point was the longest battle I ever fought. I had spoken to several unsupportive GPs, and had been forced to change clinics in order to find someone who understood my needs. One doctor reduced me to tears, questioning my symptoms and practically laughing at my plans for specialist care. Further down the road, there was another doctor who made me cry, but because she was as elated as me when I finally got my appointment with the specialist.
Eventually, I underwent laparoscopic surgery roughly two years ago. After the procedure, my specialist told me my endometriosis was quite complex. He had removed all of the adhesions using a combination of excision and ablation. Fortunately, no organs were affected.
At first, I felt an enormous relief
After my first period post-surgery, which was quite painful, everything seemed to improve tenfold. Shocked, I wondered “is this how everyone else lives?”. My periods became uncomfortable, but quite manageable as they barely hurt. The issues I had been suffering with my bladder disappeared, and intercourse stopped being painful. I felt elated.
However, this smoother existence proved to be short-lived. After three months of relative relief, my painful periods came back with a vengeance.
Then, came another post-surgery surprise
To add to the return of my horrific period pain, I also noticed a new kind of discomfort. Whenever I over-did it walking, a sharp tug would follow, sometimes making me bend over in pain. I went back to hospital to undergo further tests. My specialist determined the source of my pain was scar tissue, located at a deep level. It would require surgery, a procedure that could possibly result in further scar tissue.
So with that catch-22 situation, I decided to press pause on the side of my life devoted to surgery. I didn’t want to undergo another procedure. I especially didn't want to spend weeks in recovery, hoping for no more adhesions.
Unsurprisingly, I felt cheated
I had received the golden standard of endometriosis treatment, and my body was still cursed with the disease. My periods became so painful and heavy, I went back to being bed-ridden for days. Every month, I'd lose twelve days of my life due to sheer exhaustion. I cried tears of pain, but mostly, frustration.
When I finally returned to my specialist, he suggested giving hormones a go. I had refused these for years, but wanting to gain some control over my illness, I agreed. It was all hit-and-miss until we found the type of progesterone that stopped my periods. This gave me my life back.
A new outlook, just not the one I expected
Two years since my surgery, I increasingly believe doctors are looking at this disease in the wrong way. All a patient can aspire to is whatever surgery is available, or affordable. Many of us choose to undergo life-changing hysterectomies that don’t cure the disease. The hormonal treatments available to us merely put our symptoms on hold.
During the worst days, my illness feels like an uphill climb, requiring a sheer amount of positive thinking. Sometimes, there is no energy to look at life through a happier lens. But living with endometriosis is my reality, and this disease has chosen a very resilient human being as a nemesis. My life motto is still onwards and upwards, even with dodgy ovaries and a uterus set on self-destruct.
Do you know someone that has made a difference with endometriosis advocacy?