Endometriosis: “If you keep getting laid off, you think you must be crazy”

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Hannah was 16 when she first began suffering from chronic symptoms of endometriosis — a chronic inflammatory disease that causes tissue to grow outside the uterus.

Now she is committed to earlier diagnosis and better education on the subject.

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

Each month, Hannah suffered from long, painful periods, but felt she had to put up with it. She wasn’t comfortable talking to anyone about it.

It got worse and worse in her 20s. What started as bad symptoms around the time of her period turned into bad symptoms every day of every single month.

“I started having symptoms every day. Painful urination, defecation and sex, back pain, fatigue, vomiting. It affected my everyday life, I had no rest from it. I moved to London for work and had to take painkillers every day just to get through work. I wasn’t living life like someone in their 20s should.”

During her first swab at the age of 25, Hannah first realized that something could be done about it. “The swab was incredibly painful and the nurse asked me if I had pain when urinating and having sex. She said it wasn’t normal, so she wrote to my GP.”

pains

“I knew in my gut that something was wrong”

Hannah has been on seven different birth control pills over the years to ease symptoms. These symptoms were considered individually rather than collectively and she was often dismissed by various professionals.

“I was told it was my own fault. I’ve been accused of starving myself, exercising too much, and working a stressful job. If you keep getting fired, 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 gynecologist happened to be unavailable. In a lucky break, the doctor fills out the endometriosis expert. Hannah was told they were 99% sure this was what caused all of her symptoms over the years.

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

Confirmed

“My quality of life has improved, it has changed my everyday life”

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

“It was extremely scary, but also very empowering,” she admits.

She underwent ablation surgery to burn off the lesions superficially, but within two months the symptoms returned.

“The symptoms got worse. I was told that I was being treated so I couldn’t be in pain. That’s when I became passionate about getting a second, third, or even fourth opinion and started my own research.

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

“My quality of life has improved, it has changed my everyday life. I can behave my age, live my life, travel and not worry about being in constant pain.”

early education

Passionate about helping others with endometriosis, Hannah shares her story on her Heels & Hormones blog and Instagram.

“I would have liked to have had support when I went through that. Everyone focuses on the physical symptoms, but not being taken seriously, not being listened to, being afraid of the future, it takes such a mental and emotional toll.

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

Hannah has a clear message she wants to get across during Endometriosis Awareness Month in March and has been working with CarePlus Pharmacy on a digital campaign to spread the message.

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

life quality

“People need to listen to women, we need early education to learn what is normal but also what is not normal when it comes to women’s health, we need to break the taboo so more people can open up, and there needs to be better training for doctors and surgeons to enable earlier diagnosis and therefore a better quality of life for those affected.

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 feel alone.”

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