Endometriosis: "I didn't even know what life was like without the pain"

Hello el1saha, thank you for agreeing to share your story with us here on Carenity!

First of all, could you tell us more about yourself?

My name is Elisa, I am 23 years old and I work as an optician. I'm also currently in school to become a teacher. I'm from the state of Tyrol in western Austria, and I've been in a relationship for four years. In my free time I like to spend time with my friends.

You have endometriosis - what were your first symptoms and when did they appear?

I had my first symptoms when I had the copper IUD inserted, which was in 2016, so I was 18. Before that I had no period pains or anything like that. After the IUD was fitted, the pain I had during my period was extreme, especially in my lower abdomen. I also cramps in my anus, which may sound funny, but anyone who has ever had something like that knows how painful these types of cramps are. So, without painkillers, there was no relief for me. The pain got worse as the years went by.

Once, at the beginning of 2019, I had so much pain in my lower abdomen that I thought I was going to die, so I went to a GP and was prescribed antibiotics because they thought my fallopian tubes were inflamed, and then I started to feel a bit better again. I couldn't stay at home and rest at that time either, because I had just finished my training. This unbearable pain also disappeared after my period. 

I asked my gynaecologist several times if it was normal to have such intense pain during my period, and she told me that it was normal to have more menstrual pain when you have a copper IUD.

In the years before, I had never had a cyst or anything like that. But a month after those hellish abdominal pains, I was at a follow-up appointment with my gynaecologist. I told her that I probably had a fallopian tube infection and I didn't think anything else of it because I hadn't had any more intense pain. Then, during the ultrasound, she told me that I had cysts the size of a fist on my ovaries and that it was most likely endometriosis and that I needed to be operated on as soon as possible. She immediately referred me to a hospital with an endometriosis department.

How long did it take to be diagnosed? How did you react to it?

It was a shock for me, I didn't expect to have endometriosis at all. My cousin is also has endometriosis and what I heard was enough for me. And now I have it too and I have to have an operation. It was like a slap in the face for me, not like most women who I assume are relieved after such news when they finally know what is causing the pain. For me, the pain I had during my period was normal, I never took sick leave because of the pain because I always thought it was normal period pain and you couldn't take time off because of something like that. That's why I would take painkillers during each period as if they were Tic Tacs. But the funny thing is that my mother always said to me, "You're taking so many painkillers, you must have endometriosis" and, as is often the case with mothers, she was right.

For me, it took 3 years before the gynaecologist saw the cysts and I could be operated on. But in previous years, when I didn't have a cyst, they always said my pain was normal.

Have you received any treatment for your endometriosis? Are you satisfied with the care and information you've received about the condition?

At the hospital they explained to me what endometriosis is, what can happen during the operation, etc. and what was a big question for me: my desire to have children. To be honest, I didn't really think about it when I was 21. I was always the one who said "no, I never want to have children", then I met my boyfriend and gradually I thought: "well, why not, if it's going so well between us". Anyway, I could imagine it, definitely not at 21, but certainly later. Then came the diagnosis and the question of whether it would be possible, because we didn't know whether to remove the ovaries. It was difficult, but my boyfriend has always been there to support me. This time also brought us a little closer together. He, my family and my friends have always been supportive during through all of this, before and after the operation. At times like this you realise how great the people around you are. 

This was followed by numerous examinations in hospital. But one thing was clear from the beginning, that an operation was needed in any case, as my endometriosis was very advanced. I was kept very well informed by the doctors and always had a good feeling. It was only when I read on the Internet what had happened to some women during the operation that I was a bit scared. Mostly because I was pretty sure that my anal cramps would mean that something would have to be removed from my bowel and I often read that some women had an ostomy, which worried me a lot. 

The operation took 4 hours, but I didn't come out until after 8 hours.

Endometriosis lesions were found all over my abdomen, also in the bowel. A piece of bowel was removed, but I didn't have an ostomy. That's why I always had these cramps in my anus, because there was an endometriosis lesion there. My ovaries and uterus did not have to be removed, thank God.

I don't want to sugarcoat anything, the period after the operation was intense. I felt like I had been run over by a truck. Because of the removal of the piece of intestine, I wasn't allowed to eat anything for a few days so that it could heal properly. And after a week I was allowed to leave the hospital.

How are you today?

The copper IUD was removed during the operation and since then I have been taking a continuous birth control pill. And since then I have been symptom-free. I've had no pain since the operation, NO pain at all. At my last check-up, the gynaecologist told me everything looked as if I had never had endometriosis.

Even though the post-operative recovery period was hard, I would do it again. Because I didn't even know what life was like without the pain. Since I've been pain free, I just feel so much better in general, you have a completely different attitude in life. Of course, an operation can always go wrong, unfortunately that's the risk you have to take. 

How has endometriosis affected your quality of life? 

It used to subconsciously affect my quality of life because I always thought it was normal to have such pain. Looking back, it was a very stressful time. Always checking that I hadn't forgotten mu painkillers at home so I could just get through the day. Then at night lying in bed, completely exhausted and curled up in pain, because the painkillers eventually stop working and I didn't want to take another one because I'd already taken too many. Yes, this was normal for me.

What do your friends and family say, do you feel supported? Do you talk about your illness with them?

I honestly never talked about it, neither at work nor with friends, I only asked my mother from time to time if it was normal to have such pain and she was the first one to say, as I said: "You must have endometriosis".

Has being able to share with other patients online helped you to feel less alone or better understood?

I think it's great to be able to chat and share information here on the platform with different people who have the same problem, you feel understood in any case. Because unfortunately most people still don't know that this disease exists.

Finally, what would you say to Carenity members who are also affected by endometriosis?

My advice to all those who have to have an operation: Please don't read anything on the internet, it will make you unnecessarily anxious. It will come as it comes and normally operations go well, the doctors are all well trained and if you feel you are in the wrong hands, then better look around for another doctor. In general, it's good to get several opinions and then see what's best for you.

Many thanks to el1saha for sharing her story with us on Carenity!

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