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Image / Health & Wellness

Endometriosis: ‘I was accused of starving myself and over-exercising’


By Amanda Cassidy
23rd May 2022
Endometriosis: ‘I was accused of starving myself and over-exercising’

Endometriosis affects 1 in 10 women in Ireland. But despite how common it is, it can take up to nine years to get a diagnosis. Model and blogger Hannah Devane shares her story.

Hannah was 16 years old when she first started experiencing chronic symptoms of endometriosis – a chronic inflammatory condition where tissue grows outside of the uterus.

Now she’s advocating for earlier diagnosis and better education on the topic.

“I was the last of my friends to get my period. I was dying to get it but as soon as I got it, I hated it. The symptoms started straight away,” explains Hannah.

Every month, Hannah suffered from long, painful periods but thought it was something she had to put up with. It wasn’t something she felt comfortable speaking about with anyone.

In her 20s, things started getting worse. What started out as bad symptoms around the time of her period, turned into bad symptoms every single day of every single month.

“I began to have symptoms every day. Painful urination, bowel movements and sex, back pain, fatigue, throwing up. It affected my everyday life, I had no respite from it. I moved to London for work and I had to take painkillers everyday just to get through work. I wasn’t living life like someone in their 20s should be.”

It was during her first smear at the age 25, that Hannah first realised there was something that can be done about it.  “The smear test was incredibly painful, and the nurse asked me if I also suffered pain when urinating and during sex. She said this wasn’t normal, so she wrote to my GP.”

Pain

“I knew in my gut that something was wrong”

Hannah was put on seven different contraceptive pills over the years to help alleviate symptoms. These symptoms were looked at individually rather than collectively and she was often dismissed by different professionals.

“I was told it was my own fault. I was accused of starving myself, over-exercising and working in a stressful job. When you are constantly dismissed, you think you must be crazy. At one point I was told by a pain clinic that I would have to take painkillers for the rest of my life. But I knew in my gut that something was wrong.”

In 2016, Hannah’s gynaecologist happened to be unavailable. In a stroke of luck, the doctor filling in was an expert in endometriosis. Hannah was told they were 99% sure that it was what was causing all her symptoms over the years.

“I finally had a name for it,” she says.

Validated

“My quality of life improved, it changed my day-to-day life”

In August 2016, Hannah underwent surgery to diagnose the condition. They found it was widespread. The tissue was growing on her ovaries and fallopian tubes.

“It was extremely scary, but extremely validating,” she says.

She went through ablation surgery to superficially burn off the lesions but within two months the symptoms were back.

‘The symptoms got worse. I was told that I had treatment so I can’t be in pain. This was the point when I became passionate about finding a second, third or even fourth opinion, and I started my own research.”

Hannah found a specialist in Birmingham, and it was the first time she was completely listened to. In December 2017, eight months before her wedding, she underwent excision surgery, and it changed her life.

“My quality of life improved, it changed my day-to-day life. I can act my age, live life, travel and not have to worry about being in constant pain.”

Early education

Hannah is passionate about helping others who have endometriosis and shares her story on her blog, Heels & Hormones, as well as on her Instagram.

“I would have loved to have support when I was going through it. Everyone focuses on the physical symptoms, but not being taken seriously, not being listened to, having fear about the future, these have such a mental and emotional toll.

“There are so many misconceptions out there. Women fear about their fertility. I am 36 weeks pregnant. I consider it a miracle because I didn’t know if I could ever get pregnant. I went through IVF twice to get to this point but so many people with endometriosis naturally conceive.”

“I don’t want women to suffer in silence”

Quality of life

“People need to listen to women, we need early education to learn what’s normal but also what’s not normal when it comes to female health, we need to break the taboo so that more people can open up, and there has to be better training for doctors and surgeons to allow for earlier diagnosis and therefore better quality of life for those who suffer from it.

Endometriosis is a progressive disease; it grows every month. It can take nine years to get a diagnosis and a lot of damage is done in that time. I don’t want women to suffer in silence. I hope my story can reach someone else and help them not to feel alone.”