The painful journey with endometriosis

Henriette Lamprecht – For years she would monthly suffer from severe abdominal pain similar to labour pains that would be so painful, doing normal chores was impossible. From doctors to gynaecologists would declare it “normal”, with various treatments not making a real difference. Last month her uterus had to be removed after she finally received the reason for the debilitating pain she would suffer from during every month’s menstruation. She had endometriosis.

Bianca Pilchowski (31) was born and bred in Windhoek, but moved to Munich in 2013 where she’s currently studying at Avanta München e.V.

Her period started in 2001 “on a Sunday when I was ten years old”.

“At first I was shocked and my mother said, ‘You're finally growing up.’”

She recalls being in pain since her first period, but admits it was bearable with a painkiller.

In 2003 she went to high school where she was absent once a month because of severe menstrual pain.

“I’ve already been to so many different doctors in Namibia and also in Germany. Each one of them just said ‘period and abdominal pain is normal’.”

According to Bianca she knew, however, something was wrong with her health as she also suffers from Hashimoto’s disease, food intolerances, and allergies.

In 2006 she started taking the Pill and admits it helped in the beginning. In October 2017 the pain started again. This time, her gynaecologist in Munich prescribed a different pill every three months. “She diagnosed me with a cyst and said it would go away on its own.”

Bianca also suffered from shoulder pain, hot flashes, nocturnal cravings, and insomnia. In December 2017 she visited Namibia for two months and once again, there was another pill change. In October 2018 she woke up one morning with labour-like period pains, diarrhoea, and vomiting.

“I immediately went to the gynaecologist who still said it was normal. I accepted that and then stopped taking the Pill.”

In 2019 Bianca went to various gynaecologists and was consistently asked whether she had diabetes, which she didn’t.

“I had labour-like menstrual pains every month, so bad that I almost fell into disbelief. In addition: diarrhoea, vomiting, and severe back pain, so that I could not take part in my partial training. Since 2017 I also suffered from shoulder pain.”

After 20 years of suffering, she finally found a doctor who “listened to me and took me seriously”.

In April of this year, she met Prof. Dr Weißenbacher from MIC Zentrum in Munich, whom Bianca describes as her hero. During the ultrasound examination, Weißenbacher diagnosed her with having endometriosis tissue in her uterus. She finally had her first operation on June 7th and her second on the 5th of August.

“My diagnosis was endometriosis of the pelvic peritoneum and right diaphragmatic dome, adhesions of the peritoneum, and ENZIAN P2-3 O0 T0 A1 B2 C1. The operation was a success for a month, until my uterus started giving me problems.”

Bianca admits the diagnosis was a shock, although she was relieved to finally know she hasn’t been imagining it for years.

“Although my parents are far away, I am not alone because I have my ‘endosisters’ and my friends, whom I am thankful for every day.”

According to her, there is no specific treatment for endometriosis, a chronic disease that is incurable. Treatments include hormone therapy, laparoscopy as well as an anti-inflammatory, histamine, and gluten-free diet.

In August her uterus was removed because the hormone therapy she has been taking since 2018 hasn’t been working.

“I don't want to torment myself with monthly pain anymore. I have a goal in my life and finished with my studies. I am sad sometimes, because people don’t believe me about the pain I am going through or they tell me that I’m only looking for attention. I do not allow myself to be judged because of a chronic illness that can never be cured.”

According to Bianca, most of the doctors are not qualified in the field of endometriosis and the most frustrating part of her journey was going to several doctors and being told “period pain is normal”.

During these painful times, she couldn’t take part in her studies or even do household chores.

Her greatest wish is that there will finally be an endometriosis centre and associations in her native country.

“A lot of women or young girls in Namibia don't even know the disease. I don't want to know how many of them have to suffer.”

She advises others with the same experience to not hesitate to find a good doctor in this field.

“Endometriosis is not a disease to play around with. I also hope that we endometriosis sufferers will have a better understanding of our environment and working life. Thank you and stay healthy!" - [email protected]