WATCH: ‘I begged my husband to help me, I was in agony’: Inverness woman reveals excruciating 20-year endometriosis diagnosis wait
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An Inverness woman with endometriosis is raising awareness for the condition after she was misdiagnosed for two decades, and subsequently left to live a life in excruciating pain.
Founder and Director of VanFill Ltd, Aleksandra Czech-Seklecka (37), originally from Poland, but living in Inverness, started experiencing gruelling symptoms of endometriosis as a child.
Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
From the age of 10 Aleksandra endured horrific stabbing pains that would cut through her abdomen and subsequently cause unbearable stomach issues.
She said: “My first symptoms started when I got my period at the age of 10 and it felt like someone was constantly stabbing me in the stomach. I was very bloated and looked like I was pregnant, I was also bleeding really heavily.”
Due to Aleksandra’s debilitating symptoms she felt isolated from her peers at school, as not only did she start her period abnormally early, but she also endured excruciating pain because of them each month.
She said: “I would end up in the hospital because of it, but they constantly couldn’t find anything, so they would blame my mental health. They would say that because they couldn’t see anything in the scans it had to be in my head.
“I knew it wasn’t in my head, but I started to give up trying to speak with the doctors as I was constantly mistreated.”
Aleksandra’s symptoms started to take a toll on her social life as in many cases the pain was ‘uncontrollable’ and left her unable to walk.
She said: “It was really hard to explain it to other people as they just thought it was a period pain, so I questioned myself. I thought maybe I am so weak that I experience period pain.
“Because of that I started to push myself more and at some point I think my body got used to the level of pain. I was living off painkillers, and now I can’t even take anything stronger than paracetamol because I took them so frequently, so it’s tricky to deal with that.”
Subsequently it reached a point where Aleksandra’s career took a knock on effect as her condition left her unable to work. There were numerous times she was admitted to hospital from her workplace due to the pain.
With no diagnosis or clarity as to why she felt so unwell, Aleksandra continued to push herself more and more. This left her in an unhealthy cycle of taking time off due to the excruciating pain, and returning to work in order to play catch up, but then burning out due to the time she had taken off.
After moving to Scotland in 2016, Aleksandra was diagnosed with endometriosis within a matter of weeks.
A study by the charity Endometriosis UK suggests waiting times for a diagnosis have significantly deteriorated in the past three years, increasing to an average of eight years and 10 months, since 2020.
When talking about the moment she was officially diagnosed, she said: “To begin with I was shocked because I had never heard of it, but then I was relieved and happy that finally someone has given me an answer to what is wrong with me.
“Finally the doctors stopped thinking I was crazy as I had a name for my condition and I wasn’t making this up. However, then I realised that it is a condition that couldn’t be cured and would last a lifetime.”
While Aleksandra managed to get a diagnosis, she continued to endure horrific symptoms that left her begging her husband, Mariusz Seklecki, to ‘help her’.
The backlash of Aleksandra’s diagnosis has been detrimental to both her physical and mental health, with little facilities and specialist’s locally to support women in the Highlands suffering with this condition.
She said: “Now, if I need help, the majority of the time I have to go to the central belt. While I love living in the Highlands, the medical help is close to non-existent for women here.
“I know we have Raigmore hospital, so at least I don’t need to drive if it’s an emergency, but women living with this condition in the north of Scotland sometimes have to drive hours to get there, with no definite help. It shouldn’t be like that.”
After years of gruelling treatment, including laparoscopic procedures, Aleksandra is keen for there to be more trained specialists in the Highlands and more awareness about endometriosis to ensure that other women aren’t misdiagnosed for decades and listened to by their peers.
