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'Shame and stigma' mean women with endometriosis suffer in silence over painful sex

The condition affects one in 10 women in Ireland and has a debilitating effect on the lives of sufferers.

Image: Shutterstock/BlurryMe

A FEELING OF shame and stigma associated with endometriosis is having a severe effect on the mental health and sex lives of thousands of women. 

Endometriosis is a condition caused by abnormal cell growth occurring outside of the uterus. It leads to severe inflammation and pain, and affects one in 10 women in Ireland.

A lack of expertise in Ireland means many women wait an average of nine years to be diagnosed with the condition and are constantly set back by misdiagnosis.

The discussion around the issue has been ramped up in recent months as advocates call for greater awareness of the impact it has on the lives of those who live with endometriosis. 

Shawna Scott, owner of SexSiopa.ie, which sells products like lubricants to women who experience pain during sex, has been a part of this discussion and will speak at an event alongside medical professionals this weekend. 

She said friends and customers have reported the severe impact the condition has had on their sex life, among other areas. 

“I noticed over the years that I’ve had more and more women saying they experience pain during sex, they’re saying ‘I’ve just come out of surgery and how do I deal with this’.

“I got three or four messages last weekend alone and I’m speaking about it at an event this weekend. I get it quite often. It’s much more common than we think, it’s happening, not just with endometriosis,  but other pain issues, more than we know because we don’t talk about.”

Scott attributed the increase in numbers contacting her for help in addressing pain during sex to a new “more open” generation but said a lot of women, particularly older women, still feel a sense of shame and stigma, from both society as a whole and from medical practitioners .

“When a women comes in with gynecological problems, they report a lot of shame and stigma around it. And that’s not just from society in general but from medical professionals too. 

“I don’t hear it directly from doctors but I hear it from a lot of women who go to their GP or go to their gynecologist and they’re being turned away and their pain is being ignored.

“The average time for diagnosis is nine years… and a part of this is that women’s pain is being ignored by their GPs. They’re saying that they have really bad period cramps and then they’re told ‘yeah, we all get period cramps’.”

Shawna Scott sexsiopa.ie founder Shawna Scott. Source: SexSiopa.ie

Earlier this month, advocates called for better treatment and diagnosis of endometriosis in Ireland. They also called for a working group to be established to look at best practice measures.

Some women reported having to go to the UK and further afield for treatment.

Sufferers report experiencing severe pain and vomiting, particularly during their periods when hormone levels fluctuate. 

The cells, if left untreated, can also spread and cause damage to other organs including the kidneys and bowels. 

One woman told TheJournal.ie: ”I was managing it but then I hit about 30 and things went rapidly downhill. I couldn’t go to work, I was very sick and vomiting. I was constantly bleeding. The pain was awful.”

Scott said customers and friends “have lost work over endometriosis, they’ve lost out on income they needed to pay rent. I have friends who had to take weeks off college because they had surgery and then had recovery afterwards. It’s horrific what people have to go through”.

“The mental health aspects of waiting up to nine years to get a diagnosis means you’re left questioning yourself, and then thinking maybe I don’t have it as bad as other people.”

Along with delays in diagnosis, women are also waiting years before contacting businesses like Sex Siopa to source products that alleviate pain during sex, Scott said.

“When I started it, it was very health and designed-focused, that was my mission as a business owner. All the products I stocked were made from healthy material, and also they were well designed products.

“For older women who get in touch, it’s usually a long time coming. Often times it’s three, four or five years before they finally reach the point where they reach out for help.

“I think it takes a lot, when you’re told not to talk about sex, it takes a lot for someone to reach out to a complete stranger on the internet. They mightn’t have even talked to their partners about it. I wonder if I wasn’t in the profession that I’m in how long it would take to reach out.”

Shawna Scott will be speaking at the Endometriosis Association of Ireland‘s information day at the Carlton Hotel on Saturday. 

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