'I sobbed for myself… this was only the beginning of my journey'

‘As a girl, the most important thing you could grow up to be is a mother. You spend your days holding a baby doll. Then you get ‘the talk’ in school. You find out what it actually means to have a baby. You get your first period. This is one of the most special things a woman goes through. So why does it hurt so much? Everybody says I’m ‘adjusting’. I’m told everyone with a uterus has periods – so do they all faint and throw up and bleed for days on end too?”

This is the trajectory from child to woman that Kitty O’Brien, now 20, has been through. By the time she had missed “over half my days in secondary school, due to various period-related issues,” she, then 17, and her mother went for a specialist appointment at a Dublin hospital. By then, “my depression combined with heavy, almost gory blood loss, lead us to believe it was premenstrual dysphoric disorder,” Kitty says. “I was ready for this diagnosis.”

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But it wasn’t PDD. “While my gynaecologist had a foreign object investigating my uterus, she mentioned endometriosis. My heart sank. I had glanced online, during my research, and read that endometriosis greatly affects your ability to become pregnant. Just like that, my imaginary life, so clear in my mind since I was a child, started to disintegrate before me.”

Endometriosis affects one in 10 women in Ireland, but diagnosing the condition can be slow, with the Endometriosis Association of Ireland (EAI) putting a time of up to nine years for diagnosis.

“Many young women are dismissed and their pain and symptoms are not taken seriously. Some take over 20 years to be diagnosed.” Apart from the pain, vomiting, depression and painkiller addiction associated with the condition, if left untreated, it can worsen, with cells spreading to other organs. There is no ‘cure’, but a variety of treatment options.

Kitty had surgery, a laparoscopy, a month before her Leaving Cert mocks. “As my friends studied at home, I lay in theatre counting down from 10. When I woke up, I cried for my mother. The first thing I asked was could I have children. My consultant said that although I had lesions and scar tissue removed, there was still a high chance that I would.

“I sobbed for myself. I looked around the room at the other women who had just had the same operation. All were at least over 30; one woman was on her eighth laparoscopy. This was only the beginning of my journey.”

There were complications – “the recovery pain combined with my usual everyday agony, hypertonic pelvic floor, IBS, GERD [gastroesophageal reflux disease], from the damage that painkillers have done to my stomach, and fibromyalgia.”

Kitty was encouraged to start a course of hormonal treatment “which would, at age 17, have pushed me into a forced menopause. I was told I was ‘lucky’ for catching my illness in the headlights.”

• READ MORE: ‘Women spend a lot of time hiding and carrying shame’ – Ireland’s first Period Coach

When endometriosis is diagnosed, she says, “your whole life changes. Conversations about your future become uncertain. You have to navigate your own treatment methods, which largely revolve around sleep, dietary changes, physiotherapy, yoga, acupuncture, massage, and alternative pain management.

“You have to address your anger, your resentment against your own body, and your exasperation with the various oblivious medical professionals who pass you from one to another. Recently I visited a hospital physician who told me that my weight gain and extreme exhaustion were not medical emergencies, and implied that my motivation for appointments was ego driven. I had informed him that I had been bleeding for over 150 of the 200 days that had passed.”

In pursuit of assistance and answers, Kitty has visited dietitians, nutritionists, osteopaths, massage therapists, gynecologists. She has tried homeopathy, naturopathy, hormonal therapy and various supplements. Right now, she is vegetarian, “I do yoga at home when I can pull myself out of bed, and my next venture into self-treatment is CBD oils, and a TENS machine.”

And, she says, “social media has encouraged me immensely, with groups and advocates from the other side of the planet speaking out on their Instagram pages, calling for more research, more attention, and raising awareness, as well as the incredible Endometriosis Association of Ireland.”

For Julie Waters (38), an IT worker, the route to diagnosis was far slower than Kitty’s. She started her periods at “nine or 10, I would have been one of the first girls in my class. I had very heavy periods, and a lot of pain, but I thought it was normal.

“When I was 14, I was put on the pill, so it was obviously already an issue, but the chronic fatigue, digestive and mood issues didn’t start until later. Through my teens, the pain got worse, as did the digestive issues. I was always told ‘it’s what you’re eating, it’s anxiety, you need to relax.'”

In her early twenties, the pain was often so bad Julie couldn’t even sit but had to lie down, and she had repeated bladder infections.

Through all this, she was sent around to different doctors, including GPs at home in Sligo and in Dublin, where she moved for college, a gastroenterologist and a gynecologist. “I was told ‘it’s a woman’s issue,’ and that I was anxious. And yes, I was anxious, but because of the pain. It was a vicious cycle.”

Julie was given an exploratory laparoscopy, and endometriosis was discovered, but no tissue was removed. “The consultant just changed my pill and told me to take it back-to-back without a break, see a CBT counsellor, and relax more.”

That made limited difference, and finally when Julie was 28, she saw a specialist in the Rotunda who did surgery and removed the endometriosis.

• READ MORE: ‘My endometriosis was discovered after I had a hysterectomy’

“After the operation, things were better. I had about a year-and-a-half of relief, and then the symptoms returned as the endometriosis grew back.

“Surgery works for me, but it doesn’t last. I’ve had five surgeries now, and the specialist I see has advised against any more, for the moment anyway. It’s a lot for the body to go through, and the build up of scar tissue can be a problem in itself.

“The question I’ve been asked several times is ‘when are you thinking of getting pregnant?’ because that can suppress the symptoms. But not always, I know women for whom it got no better, and anyway it isn’t an option for me at the moment as I’m not in a relationship. I’ve also been offered hormonal treatment that would put me into menopause – before I was 30 – but I said no, because of the side effects, including osteoporosis.”

Julie’s experiences in Ireland contrast with the months she lived in Italy. “If I had problems while I was there, I was seen far quicker and any necessary scans were done faster.”

Now that more surgery isn’t an option, Julie has been largely thrown back on her own resources.

“The feeling I got from talking to specialists was that unless you are on your last legs, you’re left to just get on with it.” Like Kitty, she has been to herbalists, osteopaths, acupuncturists and homeopaths, “all without effect.

“At the moment I am seeing a nutritionist who has started me on a 12-week diet eliminating sugar, gluten and dairy. I’m also going to physiotherapy to learn to relax my pelvic floor, and that is helping a lot, but I had to find it out for myself. No hospital ever recommended this to me.

• READ MORE: Does this image make you flinch? Why it’s time to rethink our attitude to periods

“Other than that, I take painkillers, use heat pads, and sometimes I can’t get up from my desk, but I’m managing to go to work every day whereas previously, I would have missed many days.

“At its worst, endometriosis stops me seeing people and going places, which is very isolating. My friends are understanding, but this is a silent disorder, with nothing to see, which makes it difficult for others to empathise.”

For more information, visit the Endometriosis Association of Ireland, see endometriosis.ie

 

Endometriosis is a complex condition

• Endometriosis is a condition in which tissue that normally lines the inside of the uterus – the endometrium – grows outside the uterus, most often in the ovaries, fallopian tubes and the tissue lining the pelvis, although it can also spread beyond the pelvic organs, to bowel, bladder, diaphragm, lungs and beyond.

• This endometrial tissue continues to act as it normally would; it thickens, breaks down and bleeds with each menstrual cycle. But because the displaced tissue has no way to exit the body, it becomes trapped.

• It can cause cysts – endometriomas – as well as scar tissue and adhesions, abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.

• The exact cause of endometriosis is unknown. Possible explanations include retrograde menstruation and immune system disorder.

• Endometriosis can cause pain, sometimes severe, especially during menstrual periods, and fertility problems. Fatigue, irritable bowel symptoms and persistent cystitis are also common.

• Endometriosis is a complex condition, and current management by hormonal suppression is not very effective. The oral contraceptive pill is widely prescribed when women first present with symptoms, but this form of cycle suppression can only reduce symptoms, not remove the disease.

• In addition, many of the hormonal suppressive treatments come with side effects, some life changing. Surgical management of endometriosis (to remove or destroy the deposits of endometriosis, usually done via a laparoscopy) is considered the most effective in terms of reducing pain and improving fertility.

• The cost for women with the condition, both personally and for society, in loss of productivity, has been estimated at around €18,000 a year, and a recent UK survey of 13,500 women found that half reported being addicted to painkillers and having suicidal thoughts.

• Recently, there have been calls for the Irish Government to establish a working group to address the long waiting times for diagnosis and treatment of the condition.

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