Baring it all to reveal the painful truth of endometriosis

Endometriosis is often ignored with women expected to get on with their lives — but it needs to be taken seriously, says model Hannah Devane who features in a new photographic exhibition illustrating the impact of the debilitating condition

Fri, 05 Mar, 2021 - 17:25

Colette Sheridan

Model, Hannah Devane, used to have to put on a brave face at work when she was in terrible pain from endometriosis, a gynaecological condition that affects up to one in 10 women and is one of the leading causes of infertility in women.

The 31-year-old Dubliner, who has been living in London for nine years, is all too aware that there are “plenty of other people ready to replace you". And so, she continued with her career, flying to Paris four times a year, despite back pain and pelvic pain, fatigue, pain when urinating, and pain on her right side and in her legs.

Standing around on sets is all part of a model’s work and Devane found it hard to keep going.

She says she prioritised work which meant her social life took a hit. She simply couldn’t keep up with her friends.

March is endometriosis awareness month and Devane wants to highlight the condition. She would like to see it discussed in schools along with education about periods.

Doctors don’t take the symptoms seriously enough, she says. “When I spoke to doctors about my painful periods and the struggle I was going through, the attitude was: ‘That’s all part of being a woman’. But what I was experiencing wasn’t normal.”

Devane says if doctors were quicker to diagnose endometriosis, women wouldn’t have to wait so long to have their condition recognised.

Painful symptoms

The debilitating condition occurs when endometrial-like tissue grows beyond the uterus. (Mistakenly, medics once thought that this tissue was the same as the endometrium shed each month in menstruation.) The abnormal tissue secretes substances that irritate the surrounding tissues, causing them to bleed. The body’s inflammatory response to it can cause severe pelvic pain. Scar tissue can form and cause pelvic organs to adhere together, distorting the pelvic anatomy.

Devane always had painful periods. “It wasn’t until my 20s that things became super-difficult. My symptoms were becoming more frequent and more severe. I was affected not just during my period but throughout the month. I would sometimes get sciatica and I’d have terrible brain fog.”

When Devane finally found a doctor in London who took her symptoms seriously, she underwent laparoscopy, a surgical procedure used to examine the organs inside the abdomen. This resulted in a diagnosis of endometriosis. Devane was treated with ablation which destroys the lining of the uterus.

“But my symptoms came back within a few months. So I was back to square one. I didn’t want to be in the situation of having to repeat surgery every year. So I did my own research and I found a specialist in excision surgery in Birmingham called Mr Chris Mann.”

Excision surgery is where the scar tissue and the roots of adhesions are removed.

Detail of Hannah Devane's scar. Picture: Ester Keate

Devane underwent the treatment nine months before she got married. “The wedding was the big driver for the surgery. I really wanted to be well for it. I got married on September 1, 2018. I had my surgery in December 2017. It was a long recovery. I had quite severe endometriosis — it was found to be widespread.”

There are just two excision-only gynaecologists treating endometriosis in Ireland, according to Kathleen King, a scientist and former chair of the Endometriosis Association of Ireland. They are Dr Aoife O’Neill at Tallaght Hospital and the recently appointed Dr Hugh D O’Connor at the Coombe Hospital.

King says that pre-covid, the waiting time for Dr O’Neill was at least three years.

As well as being a condition that sometimes results in infertility, endometriosis can make sex painful. “It can affect people in different ways. I did have some issues with painful sex but I’m so much better now.”

Devane doesn’t have children. “It’s not something I’d really like to discuss because nobody really knows what the future holds. Endometriosis can affect fertility but then again, lots of women who have it have no problem [having children].

Standing strong

Devane is hopeful that she will continue to have relief from pain apart from during menstruation. However, she also has a condition called adenomyosis where cells grow into the uterine wall.

“A lot of people have both conditions but adenomyosis can’t be excised. I will always have lasting problems but that’s just during my period. The rest of the month is so much improved. Before, I was in pain every day.”

To raise awareness, Devane shares her experience of her medical condition and treatment on her blog, heelsandhormones.net.

She took part in a nude photoshoot with 17 other ‘endo warriors’, all of whom bare their scars. The portraits of the women were originally scheduled to be exhibited under the title WITHIN at the M&C Saatchi gallery in London, but because of Covid-19, they are being exhibited online until March 31.

As the exhibition photographer, Ester Keate states: “The women’s nudity expresses the sense of vulnerability and loss that many endometriosis sufferers describe. They are exposed and unprotected from their condition. Yet, the images also show the bravery of these women... They stand strong, seeming almost statuesque in the face of their suffering.”