She travelled to Greece after her surgery in Norway was incomplete. Maja, our patient, shared with us her journey into the world of endometriosis care.
Wrongly believed, endometriosis is considered a disease of mature women. A disease that can be cured by pregnancy and other methods that stops menstruation. In reality though endometriosis can affect individuals of all ages and in many cases symptoms starts from a young age.
“I was having some urinal problems and a lot of infections/discomfort that was never properly examined since I was around 13 years old. Was on antibiotics often, it never got better. Now I know that I had endometriosis on the urethra that was huge, so probably that was built up then. I had very painful periods, but I was told it was normal. Pain while urinating and defecation was getting worse by age but I think I have had them since school. My family was trying to help me to find a doctor, but since everyone said everything was fine with me and nothing was ever found, I did not say much so as not to worry them”
She went to the emergency room at least once a week and she was sent home with painkillers
Endometriosis is a painful disease and in many cases it has various symptoms. Because it is a disease that is not easily diagnosed, imaging often finds no issues.
“My symptoms started getting worse about 4-5 years ago, with terrible pain. I had a CT done because they thought I had kidney problems. I paid to do a colonoscopy and gastroscopy because all gynaecologists were saying that I don’t have any sign of endometriosis, they couldn’t find anything on ultrasound. I went to A&E at least once a week for years because of the pain and was sent home with painkillers.”
The battle to receive a diagnosis started, after she was told that is gluten allergy or physiological
“I went to see a gynaecologist and she found a cyst that was big so she referred me to hospital and then I told them I need them to open and see what’s inside, even though they didn’t want to because there was no sign of endometriosis. I was told many times it’s a gluten allergy, it’s psychological, I have to relax while having sex, I have to have a drink and so on”.
She saw 30 gynaecologists and all of them were saying the similar things
“I have seen about 30 gynaecologists, everyone had something like this to say. I was diagnosed with endometriosis in January 2023, after I insisted to see what’s wrong with me, so I had surgery. I have been told there was a bit of endometriosis and they removed it, but the part on the rectum they didn’t remove it. It was a polyclinic day surgery department. After that surgery I was very happy because I didn’t give up and I knew I had endometriosis. I started researching and sinceI was getting even worse, my pain was impossible to handle so I decided to look for help outside of Norway. I was never sent for an MRI or anything here”.
She was advised to become pregnant
“I was told by a few doctors after my first surgery here, and before I went to Greece, that I should stay pregnant. That will help me and they gave me birth control tablets, they said that will help with pain. After I did my surgery in Greece I went to the hospital where I did my first surgery to check up after a surgery they did, and was told that my endometriosis and my case was not that bad as Dinos wrote, they don’t believe it. They told me, yes, we agree that the job could be done better, we didn’t remove everything but it’s not that bad as he says. I left the office and never came back and I hope I won’t”.
The impact of endometriosis is more than just pain. It affects all aspects of one’slife. Many endometriosis sufferers struggle to keep their jobs. This is the case of our patient as well, who found it very hard to keep up with her duties.
“It took a life out of me, years of pain and struggling. Many times I cried at work because I didn’t know what to do with pain. I was falling asleep because I couldn’t keep my eyes open from tiredness. It’s was getting worse and worse for 4 years and last year I couldn’t handle it anymore. I was having mood swings, I was very sad because no one trusted me. After the first surgery here, I was crying from happiness because I didn’t give up and I knew I had it”.
Her extensive research led her to Dr Kyriakopoulos
“I was researching and looking for a specialist after I was feeling so sick and got worse after my surgery here. After researching I realised that in Greece I can get the help I need and I wanted Dinos to operate on me. The experience was very nice, everything was done very fast, all the check ups before the surgery and was very well organised. I took it mentally as a vacation”
After years of being neglected she found a doctor who helped her
“I am abnormally thankful for this man, he saved my life. I can’t recognise myself. I don’t have any pain, I’m feeling great. I just don’t know how to live without pain, I’m constantly worried it will come back. The team was amazing, everyone was very nice and professional. Dinos is just amazing and so caring and funny, forever thankful to him”.
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