I had never heard of endometriosis before
Becky, 35 years old
"I find it important to accept the illness, to make sure I do what is best for me, and to fight for my interests. On the one hand my endometriosis is a great burden, but on the other it has given me the opportunity to change so much in my life."
It all happened pretty quickly: About five years ago my periods started getting heavier and I had more and more symptoms. Doctors assumed that my ovaries were inflamed.
My symptoms didn’t get any better as time went by. I wasn’t happy with my doctor and looked for someone else. My new doctor then discovered that I had a cyst. She referred me to a hospital straight away, where I was operated. There they told me that I had endometriosis. I had never heard of it before. My doctor sent me home with an information leaflet. That was all. The information wasn’t particularly useful. My whole world collapsed. I cried a lot. It all happened so quickly, within three months.
I started looking for information about the illness, mainly on the internet. The approaches that my doctor had suggested to me weren’t all that helpful. I wanted to get pregnant at the time, and fertility treatment was out of the question for me. It was a very difficult situation for me because I really wanted to have children. My sister-in-law had just become pregnant and then I found out that I had endometriosis.
It all happened very suddenly
Other women have symptoms for years. In my case it all happened very suddenly. I didn’t have any symptoms, but that might be because I was on the pill for many years. When I stopped taking it my periods got heavier and heavier and I often felt exhausted. That was the worst thing for me; feeling so exhausted and weak. I then had a second laparoscopy in which endometriosis tissue was removed, and I was given injections for four months. I mainly have endometrial cysts on my ovaries and some tissue on my peritoneum (ed. note: membrane lining the abdomen). On top of that, one of my fallopian tubes is blocked. During one of the operations a septum (ed. note: a wall in the womb) was removed.
After receiving the diagnosis, I gradually looked for other ways to deal with it. I basically changed my whole life around: I started doing yoga and tried out various herbal treatments. I also changed my diet, drank only a little alcohol and no coffee. I was always relieved to come home after work and recharge my batteries, which were often completely flat. The first year was really tough for me – but things improved after that.
Unfortunately I wasn’t able to get pregnant. I then decided to try fertility treatment. I saw it as a final attempt. I'm happy that I did it. I know that I did what I could, and won’t have any regrets in that respect when I’m older. I’m trying to accept the fact that I won’t have any children now. The emotional roller coaster ride every month was really very difficult for me. It also affects every other area of life, including your relationship and work. I'm happy to put it all behind me now. I have to find inner peace again. During those six years I put myself under a lot of pressure. Every month I was eager to see whether I was pregnant or not. I’m happy that that's over now.
Yoga really helps me. It’s very good for me, both for my body and my mind. Acupuncture also helped me to cope with the pain. I'm very happy that having endometriosis made me change my life around. Although I still have the illness, I'm in good condition physically.
I've had several operations, mainly to remove cysts. I could feel the cysts every month. But I didn’t have a big problem with pain. I have hardly needed painkillers recently. My biggest problem was the fatigue and lack of energy. But that was mainly only a problem during my periods. I was lucky in that respect: the symptoms I had only arose around the time of menstruation.
Endometriosis no longer plays such a big role in my life
Endometriosis is simply a part of me now. That’s just the way things are – I can’t change that fact. I try to cope with it as well as I can. It no longer plays such a big role in my life. At the moment I can’t feel anything, but I know that it's there. I think I have quite a mild form of endometriosis – I can live with it! I try to make the best of the situation.
I find it important to accept the illness, to make sure I do what is best for me, and to fight for my interests. On the one hand my endometriosis is a great burden, but on the other it has given me the opportunity to change so much in my life. Every cloud has a silver lining. I've had so many nice and good experiences. Who knows how things would have been without the illness? I might never have started doing sports.
There will always be times when I feel a little down, but I will summon all my strength and make it!
These real-life stories were gathered during interviews with patients who generously shared their experiences with us. We are very grateful to these interview partners. All of them have given their permission for these stories to be published here.
The opinions and comments in these stories are the opinions of individuals. They are not recommendations by IQWiG.