After having a bad day with stomach cramps, I decided it was time to share my story of having endometriosis: the pain it can cause, how it was diagnosed and the lengths I went to to be pain free.
Endometriosis is a condition where the womb lining grows in other areas on the body including intestines, bowels and even lungs. It is debilitating and at its worst can cause infertility. There is no cure for this disease, only preventative measures which can be taken. This is my story, starting from when I was much younger through to present day and the road I followed.
As a teenager, I had painful periods and days where I couldn’t even move or get out of bed. Part of me thought this was perfectly normal, it would be years before I learnt the truth and make a decision which would change the rest of my life.
Up until the age of about twenty two, I was able to manage my periods with hot water bottles, Feminax and copious amounts of tea. The pain got progressively worse, the bleeding that had previously lasted for 3 days was now lasting for at least a week and I was having rectal bleeding too. If I’d had more information I may have been able to connect the dots sooner but it took yet another trip to the doctors before anybody could suggest I have endometriosis and what that would mean for my future.
This is when the endless hospital appointments started. They sent me for a kidney scan to rule out any issues and then decided a laparoscopy was the next step. This is a procedure which is completed in a day but left me unable to leave my flat or to go to work for over a week while I recovered. The laparoscopy is the easiest way to diagnose endo as they pop a small camera into you via your belly button and are able to determine the presence of the tissue in various areas. I was diagnosed with endo, the only treatment option I was given was to have the tissue lasered off. I didn’t fancy having that done based on the side effects and issues that might occur. At this point I decided to go it alone, however, I was taking painkillers like smarties and buying the chemist out of heat pads to be able to keep going whilst I was at work.
During this period we decided to move back to my parents house and I decided to see what options were open to me. In the back of mind I’d always known that I didn’t want children and that a hysterectomy would be my best chance at getting my life back. The only problem was convincing the staff at the hospital that this was definitely what I wanted. First of all, they made me have another laparoscopy to determine the extent of the endo since my previous surgery. After this, I was given a hormone injection every four weeks for approximately six months in order to mimic what would happen to my body if my ovaries were removed. Without HRT for one month, this was absolute hell. Night sweats, hot flushes and memory loss were just part of what I experienced. I went back and asked for HRT. They helped with those symptoms but managed to cause other issues such as: loss of libido and mood swings. However, there was one upside to all of this – my endo symptoms subsided.
At this point my consultant finally agreed that I could go through with the surgery and have a Total Abdominal Hysterectomy and Bi-salingo-oophorectomy (a full hip to hip incision where they removed my womb, cervix and ovaries). This was also the day of a family funeral. I was in tears when I went down to surgery and trying to convince the surgeon that I was happy to go ahead was hard but I got there in the end. I spent four days in hospital and was released on the Sunday before Christmas.
Weirdly, the pain of recovery from the hysterectomy was less than the pain I had been suffering. I’ve since been diagnosed with IBS and if I hadn’t had the surgery it may have gone unnoticed for years.
In my case, the surgery was the best thing I could have done and while I still have the odd bad day, they are now few and far between. The only thing I will say is, this should really be a last resort and only if you are 100% sure as there is no going back and the recovery process is a long and hard one. However, it is worth it if you are physically and mentally prepared for the changes that will occur.