Affecting one in ten women, endometriosis is still a disease that doctors have difficulty identifying and even more difficulty in treating. It is not unusual for specialists to take more than five years to diagnose endometriosis in their patients. I was 27 years old before I finally got my diagnosis for this disease which had handicapped my daily life for years.
School life was difficult, the excessive blood loss and relentless pain made it very difficult to concentrate on school work not to mention the necessity for numerous trips to the toilets.
Finally, I went to see my doctor who didn’t seem to concerned but prescribed the contraceptive pill to see if this would help!
Sadly, this did slow down the blood flow but not the pain that just got worse as I got older. I was not happy taking the pill continually so consulted a well-known gynecologist but found nothing. I did ask if it could be endometriosis as my elder sister had been diagnosed with this a few years previously when she had difficulty getting pregnant. She like me, had been having horrendous periods for many years and been told that this was just “normal period pains”. However, my gynecologist was adamant it was not endometriosis.
Still not convinced, I went further afield and got a second opinion and again was told that I was on the wrong track.
Life with this disease got even worse when I started work the pain was omnipresent which again hindered my concentration. I was exhausted all the time and sometimes the pain made me physically sick. I was so bloated that somedays I could hardly zip up my trousers and spent many hours just crying. One summer while working I had the worst period ever with contractions that were unbearable, I was in so much pain I had to go to the hospital emergency department. Again, nothing was found and I was told to see a gynecologist.
In 2018, I decided to move to London. Life was very hectic and everything moved at a fast pace. This only made my situation worse. I worked in a small office and had to travel more than one hour each way by bus and underground trains. When I had my period, I was forced to stop half way to find a public convenience to change my sanitary products to avoid leakage. While in the office I was necessary to set my alarm clock for every 40 minutes to go to the bathroom. I looked awful and my colleagues would ask if I was ok. Sometimes when I was at my worse, I would just get a taxi home. I had no social life as another side effect is a digestive problem that also means that I frequent the bathroom. This is so embarrassing when you are at a friend’s house or at a restaurant.
Many consultations and many different contraceptions ie pill, copper coil, hormonal remedies… nothing changes.
Another year goes by, I decide to go and see a GP, thankfully this one took me seriously. In no time at all, I had an appointment at the endometriosis center in London. Here the specialist did a few tests including an endo vaginal ultrasound and an MRI. She found a few small cysts but nothing alarming. However, she said to be sure I needed laparoscopic surgery. At that point I was ready to do anything to find out why I was in so much pain.
Well, the verdict was in: not only did I have deep endometriosis, I had adenomyosis as well. I was full of lesions and cysts. My intestine, ureter, bladder, fallopian tubes, uterus and ovaries were all affected. The specialist removed as many cysts and endometrium lesions as she could. She then explained to me that my fallopian tubes were also partially blocked and that my chances of ever having a child were minimal if not inexistant.
As you can imagine on one hand, I was relieved to have a diagnosis but on the other hand, I was devastated to be told I may never have children. What was worse was the hatred I felt for all the doctors over the years that had basically told me that my symptoms were normal and not endometriosis.
As far as pain is concerned, the operation has definitely changed my life. I suffer a lot less; my digestive problems are less frequent.
At this time of my life, my partner and I were not ready to start a family. So, I decided to try artificial menopause in order to keep the endometriosis at bay. The problem was the side effects of this treatment, I was in more pain than before, hot flushes, night sweats, weight gain, no energy, and was depressed. After 7th months, I decided enough was enough and stopped the treatment.
Two months later, I was slowly getting back to my version of normality. Although I was still very tired and weak and depressed at the thought of my next period that would tire me out even more. Little did I know that this period would never arrive as I was pregnant.
Against all odds, after a far from easy pregnancy, my own little miracle was born, a very healthy baby boy. Unfortunately, however since the birth, my symptoms and pain have all returned.
Endometriosis is not just a set of symptoms; it impacts the lifestyle of all those who have it. It is not only pain, but also lost days, missed events, misunderstanding from family and friends. A sometimes-complicated intimate relationship, discomfort in the body, no motivation to see friends, get dressed or even go out.
At the moment there is no miracle solution, but it is possible to improve one’s daily life with surgery, or with more gentle methods such as a hot water bottle, adapted sanitary products and a healthier lifestyle.
Today, thanks to my research, experience and my mental strength, I have accepted my illness and learnt to live with it while minimizing my symptoms and reducing my pain as much as possible. I am convinced that by adopting a positive attitude, while being surrounded by understanding people we can improve the lifestyle of those living with this invisible disease.
