Jessica’s life was ruined by endometriosis – 13 years before diagnosis

Jessica Johansson Kohut suffers from the painful and incurable female disease endometriosis.
Severe pain, heavy menstrual bleeding, fatigue and difficulty urinating – these are some of the symptoms that characterized Jessica’s life.
– It took 13 years before I got a diagnosis, she says in Nyhetsmorgon.

250,000 women of childbearing age are estimated to suffer from endometriosis and many live with the disease for many years before they get help. At the same time, 80 percent of young people between the ages of 12 and 17 have never heard of the disease. This is shown by a new SIFO survey conducted by the Endometriosis Association of Sweden and the Gynecology Clinic Endogyn.

Jessica started having pain during her period and then during ovulation. She ended up having varying degrees of pain throughout the month, but it was worst during ovulation.

– I have been in pain for a large part of my life, she says.

Seeking help again and again

In endometriosis, the endometrium has spread outside the uterus, most commonly on the ovaries and on the abdominal wall. This can then lead to severe abdominal pain and chronic inflammation, symptoms that often begin already during adolescence.

Jessica understood early on that something was not right and sought help again and again – but was constantly dismissed. Among other things, she was told that it was normal to have heavy periods and severe pain. Several times the medical staff suspected appendicitis.

– But when they didn’t find anything, I was sent home with painkillers and a diagnosis of unspecified abdominal pain, she says.

“Nice to know what it was”

After thirteen years, Jessica finally got her diagnosis and was then able to start getting real help.

– It felt incredibly nice to know what it was. Even though I don’t want this disease, it was nice that it wasn’t something that might cause my death, says Jessica.

Now she receives help via the endometriosis center and she has had to try different types of both hormone treatment and pain treatment. Despite that, her life is marked by the illness from which she will never recover.

– It’s hard, you never know if you’ll have to cancel something you planned with friends. You also don’t know how it will work with work and how you will cope with the day. It also takes a toll on you mentally to walk around with constant pain, says Jessica Johansson Kohut.