Endometriosis: Limerick woman talks about ‘debilitating’ condition

A CONDITION as common as diabetes, endometriosis affects at least one in 10 women. Although, it is believed figures could be much higher due to a lack of awareness. For Caherdavin native, Kathryn McMahon, it took about eight years to get a diagnosis.

A chronic condition named after the endometrium, endometriosis is caused when tissue similar to the one found in the lining of the uterus or the womb grows outside of it – where it does not belong. During menstruation, the cells react in the same way as those lining the uterus, however, they have no way to escape – and become trapped.

The most common symptoms include: intense pelvic cramping, pain during sex, bowel pain, constant fatigue, migraines, nausea, and irregular periods. In some cases, endometriosis can cause infertility.

For some women, the pain can be insufferable. Kathryn is one of those women.

Since the age of 13, Kathryn has been suffering. But, for years, her pain was dismissed by GPs.

“I was just told it was bad periods, normal pain, that I needed to put up with being a woman. I was told it was because I was constipated, because my appendix was removed.

“At one stage, I was asked if it was all in my head, and if there was anything going on in my life that could be causing stress, that I’d be making this up,” she recalls.

After being dismissed by several doctors, Kathryn decided to do her own research online.

“I think I was about 17 when I discovered what endometriosis was. I went into my doctor’s and asked if it could be endometriosis, and he didn’t know much about it,” she recalls.

At 21, she finally got diagnosed with the chronic condition after getting a laparoscopy - a surgical procedure that allows access to the inside of the abdomen and pelvis without having to make large incisions.

So far, Kathryn has had four surgeries – three ablations and one extraction.

According to her, she had to go private for her excision surgery because only a handful of specialists in the country perform it.

Despite the surgery, it only took a few months for her symptoms to come back.

As a product manager at a gaming company, Kathryn sometimes has to work from bed as she can’t get up because of intense pain.

“It’s debilitating, I'm doubled over or on the ground crying. It feels like I'm being stabbed repeatedly in my lower abdomen to the point where I’m buckled over on the ground crying in pain, just wanting to give up if I’m completely honest,” she admits.

Kathryn endures the pain throughout the whole month, despite the fact she is on contraception. “A lot of the time I throw up from the pain, I’ve fainted from the pain before.”

Another symptom she experiences is painful sex.

“It’s a big one for me, but I’m very lucky to have a super helpful and understanding fiancé,” she notes.

‘They said it was normal’: Limerick woman shares her story of painful condition that went undiagnosed

According to Associate Clinical Director in Perioperative for the UL Hospitals Group and Consultant Gynaecologist and Obstetrician, Dr Katie Field, there are two main treatments which can help to manage the pain caused by endometriosis.

“The first one is the ablation surgery, where we essentially burn away the endometrial surface. The other one is excision, where we cut out endometriosis,” she says.

“There’s pros and cons to both of them, it depends very much on the stage of endometriosis,” Dr Field explains.

At the moment, Dr Field has two patients whose endometriosis is deeply infiltrated – for them, the better option is the excision surgery.

“The amount of endometriosis can range from two or three small spots, to endometriosis so deeply infiltrated that it requires bowel excision.”

As endometriosis can come back despite the surgeries, she explains: “Sometimes with endometriosis and things like the ovaries, we're often a little bit more conservative with surgery just to maintain ovarian function, especially in younger girls. We don't want to destroy their ovaries and put them into an early menopause by extracting or burning all of the ovarian tissues”.

According to her, the key to preventing recurrences is to go on a pill that puts women into early menopause and “turns off” the ovaries.

“In my opinion, you should always be on some form of hormonal treatment until menopause, unless you’re trying to get pregnant. That’s one of the better ways to prevent it from coming back,” she says.

Speaking of the dismissal of endometriosis by some medical professionals, she says: “I wish people would listen and take a proper history when they're talking to patients. It’s important to listen, especially with young girls and teenagers, to not be dismissive.”

She adds: “I think it’s getting better, a lot of women have been talking about it in the media. I think there's been more education on endometriosis. I think we're getting better at the surgery for endometriosis”.

As more funding is becoming available, there are plans for a Limerick endometriosis clinic.