My mother said that painful period pain is totally normal
Tina, 46 years old
"I already had very painful periods as a girl. My mother said it was totally normal. She had always had severe period pain herself. So I never mentioned it to my doctor back then."
I think I already had endometriosis as a young woman. I always thought that I was making a big deal out of it, that the pain was normal. I never thought that I might be ill. The pain wasn’t all that bad at first. I always did a lot of sports, which helped too. It only became a problem later.
I was on the pill for many years. I felt fine and didn’t have any real problems during my period. Then, just before my 20th birthday, I stopped taking the pill. A few months later I suddenly had very bad pain in my belly. I can remember it very clearly: It took me completely by surprise and hurt so much that I thought I wouldn’t be able to cope and would faint. From then on I always had very strong burning pain on the first two or three days of my period and for a few days after, but I didn’t have the extreme piercing or stinging pain yet.
I thought it was all in my head
A doctor once told me that this kind of pain is often a psychological issue, particularly in women who are career-driven and uncomfortable with their femininity. That stuck in my mind. I thought it was all in my head. During one conversation he mentioned that I also had cysts, which I was treated for. I guess that should have made my ears prick up.
A few months later I went to an internal medicine specialist because I had very bad bowel problems. He immediately made the correct diagnosis. He was a brilliant doctor. I had surgery within a week. Different organs were affected and they couldn’t remove all of the endometriosis tissue. It had grown on different parts of my bowel – both my small and large intestine – as well as my bladder, ovaries, fallopian tubes, womb and peritoneum (ed. note: membrane lining the abdomen). One of my fallopian tubes was removed during surgery, along with tissue from other places.
Back then I was at a stage in life when I really wanted to have children. It was really important to me. After my surgery, the ovary that was left still worked but the fallopian tube was blocked. It took me quite some time to come to terms with that. Particularly because more and more of my friends started having children and I had to put up with an increasing number of insensitive comments. At first I didn’t talk about it openly. I couldn’t. IVF (ed. note: in vitro fertilization) was my only remaining option. I tried it five times over a time period of five to six years. I found it very hard, both physically and mentally. But it gave me the chance to face my problem, think about things and come to terms with the situation. The attempts were unsuccessful, so that was the end of that for me. Those years gave me a lot of time to accept the situation.
After my first operation, which went well, I took GnRH analogues and danazol for several months. They caused quite a few side effects, such as mood swings, menopause symptoms and an increase in appetite. But I was OK about it because I thought the medication would help and that I would be healthy again after taking it. That wasn’t the case, of course. When I stopped taking medication I started having really bad pain again within a few weeks.
I also had problems with my bowel. In one or two places the endometriosis tissue blocked my bowel so I had to have surgery. After that it became clear to me that I had to take the condition more seriously. Up until then I had thought that I had it under control and that nothing else would happen.
After my operation I was on sick leave for a year. I used that year as an opportunity to think about what I wanted in life. I started studying again and changed my career direction. I also became active in self-help groups and made use of my experiences.
I started reading a lot about endometriosis
Then I started reading a lot about endometriosis and actively thinking about things. I no longer accepted the situation. I wanted to have a good quality of life again and to lead a normal life.
The pain basically got worse over time and started lasting longer. That was actually the main problem; that it lasted so long. Two or three days turned into a week, then two weeks, then three, and eventually I was constantly in pain.
It felt as if someone was stabbing me in the belly with a knife, as if my belly was being cut open without an anesthetic. I couldn’t cope without painkillers. I also had gas and constipation. When the pain became extreme I could no longer concentrate properly, no doubt because of all the painkillers I took too.
I still had an area of endometriosis tissue that they weren’t able to remove during the second operation either. Doctors suggested I have a third operation. I thought about it for quite some time. Together with the doctors I decided against surgery. Instead I opted for medication, which worked well.
My husband didn’t really know how to handle my illness. He saw me suffering and felt helpless. But he really helped me in some situations. For example, by encouraging me to go out and meet up with friends or go on vacation… That was really good for me, because it's so easy to become withdrawn and lose contact with the outside world. I don’t think I would have managed quite so well alone. My husband was a great help in that sense. But he didn’t understand much about the endometriosis itself.
My illness developed over 20 years and has become a major part of my life. For about two of those years I felt very down. I don’t only see it as a negative experience. I know that there will be bad times and crises but I feel capable of coping with them.
Nowadays I’m back at work full-time. A few years ago I would never have thought that I would feel so well again. I take good care of myself and my body. For instance, I do yoga, eat a healthy diet and try to manage my stress better.
This is how I am dealing with it for now: I go for check-ups and take better care of my body. I can still feel the remaining tissue. I’m waiting for my menopause to start. I feel fine because I’m managing well with the medication and don’t really have many side effects. It works well and I’m happy with it. Things have turned out pretty well for me.
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.