Period pain: Living with poorly understood endometriosis
Endometriosis occurs when ‘the lining’ of the uterus grows beyond it. Though it affects one in 10 women, the painful condition is little known here, says
Amy Moriarty, in Kilkenny, has had many days when she couldn’t move or stand up, because of severe abdominal pain, which radiated into her back.
Susan McCarthy, in Dublin, has had such severe pain that she has vomited. “Pain and bloating are two of the worst things: there are certain times of the month when I look pregnant,” says the 39-year-old.
As a teenager, Irene McGillivray was “in absolute agony”; 20 years on, the pain was chronic and she suffered “every single day.”
All three women have endometriosis, a gynaecological condition affecting one in 10 women. Yet despite having a similar incidence to asthma or diabetes, endometriosis isn’t commonly known, and diagnosis is delayed, on average, nine years after symptom-onset.
“I’ve spoken to women who’ve gone 25 years with no answers,” says Endometriosis Association of Ireland chairperson, Kathleen King.
The condition occurs when endometrial-like tissue is located beyond the uterus. Medics once thought, mistakenly, that this tissue was the same as the endometrium shed each month in menstruation. The abnormal tissue secretes substances that irritate surrounding tissues, causing them to bleed.
The woman’s immune system responds, releasing proteins that cause swelling and inflammation. The disease itself — and the body’s own inflammatory response to it — can cause severe pelvic pain. Adhesions (scar tissue) can form and can stick pelvic organs together, thereby distorting normal pelvic anatomy.
Varied symptoms hinder diagnosis
Endometriosis is most often found on the lining covering pelvic organs, the area between uterus and rectum, uterosacral ligaments, and pelvic sidewalls. When it affects ovaries, endometriosis is likely to be more extensive and can also affect the intestines. In rare cases, endometriosis has been found in lungs/brain/skin/pelvic nerves. Some women develop it in abdominal surgical scars.
Typically, endometriosis pain worsens during menstruation/ovulation. But endometriosis symptoms vary so much, between women, that quick diagnosis is more difficult.
“Some women have absolutely no symptoms and endometriosis is only discovered when they’re trying to conceive,” says King. (About 40% of women with endometriosis have fertility issues, which is double the normal risk). Other women present only with very severe fatigue or have pain with bowel movements even outside of menstruation.
Many women also don’t realise that their pain/symptoms indicate something’s wrong.
“You often see a lot of endometriosis in the one family. If your mum/sister/aunt has it you’re up to seven times more likely to have it, too. If every woman in your family has pain and heavy bleeding you think it’s normal,” says King.
Hardest of all is when women recognise something’s wrong, only to have medics dismiss this. “Women are told, ‘it’s part of being a woman’, ‘it’s all in your head,’ or ‘it’ll change when you have a baby or hysterectomy or new hobby or job’,” King says.
She deplores the medical-knowledge gap, saying doctors don’t know enough about the condition and don’t watch out for it.
“GPs have told me they don’t feel they can refer women with period pain to the gynaecological service, because waiting lists are long and the diagnostic procedure’s invasive,” says King.
Not taken seriously in Ireland
Amy Moriarty was 19 when severe pain brought her to Caredoc. The doctor, originally from New Zealand, said it could be endometriosis, that it wasn’t taken seriously in Ireland, and that it could affect fertility. “It was a big shock, hearing I could have a chronic illness that very little was known about and with very little treatment. It was pretty scary. I thought, ‘it probably isn’t that’,” Amy says.
An ultrasound showed one of Amy’s ovaries to be larger than the other. “They did another ultrasound, after six months. They couldn’t see anything then, so they said it must have been a cyst that had shrunk. I still had the pain, but no real answers.”
She was then “bounced between departments and told I had everything from irritable bowel syndrome to the latest chlamydia infection.”
Endometriosis can only be diagnosed by laparoscopy, a surgical procedure under general anaesthetic that looks inside the pelvic area.
Amy, then 25, was referred for what she believed would be exploratory laparoscopy; and that any adhesions would be removed. “I believed I’d be in much better shape afterwards. When I woke, the surgeon said there was ‘sign of adhesions,’ but not very much, and that I must have had previous surgery, causing scarring. I was so upset: I’d never had previous surgery. If he’d read my notes, he’d have known,” Amy says.
After demanding referral to another hospital, she met “a fantastic gynaecologist,” who acknowledged she’d been “through the mill”.
He seemed knowledgeable about endometriosis. “He answered questions I hadn’t even voiced. He prescribed medication to reduce swelling and bleeding. He wanted to get me to where I could try IUD (intrauterine device). He warned me it’d take six months to really feel a difference.
“After three months, I was ready to tear the IUD out, I was in such agony. But I trusted him and at six months I had less pain and then my period stopped at nine months: 90% of the pain was gone,” Amy says.
After so many years, it was “just amazing,” says Amy, who is now studying software development. “I’d put everything on hold. Now, I felt I’d been given a chance to live my life again.”
Excision surgery offers some hope
When Irene McGillivray, 36, in Raheny, went for her first pre-laparoscopy consultation, she felt the doctor had already decided she didn’t have endometriosis. “He said he’d open me up to prove me wrong. Afterwards, he said he’d found something that could be endometriosis, but it mightn’t be,” she says.
Irene’s sister-in-law had had surgery for endometriosis in Northern Ireland and in 2018 she decided to do so, too. “The doctor found I was riddled with it. It was all over my pelvis. He removed a good amount. I felt immediate relief; any endometriosis in me creates very strong symptoms. I was better for six months: he’d done excision surgery, but hadn’t removed everything,” she says.
Excision (surgical technique to cut out the tissue) is the most successful treatment. It cuts out the roots of adhesions, whereas the ablation technique is more superficial.
King says there’s anecdotal, and some limited scientific, evidence to show excision is best for reducing pain and improving fertility.
“Some surgeons are seeing 85-90% success rate, where women won’t need further treatment. But it’s very important the endometriosis is diagnosed early and the surgery done right,” King says.
She herself was diagnosed with endometriosis in 1997. “Back then, women were going for surgeries [ablation] every few years, not knowing this could be doing as much damage as the adhesions themselves.”
According to King, just one surgeon in Ireland is doing excision-only surgery and her waiting list for public patients is three years and eight months for private patients.
Just last month, Irene had excision surgery in Romania. She’s had significant improvement. “I can function. I have energy: I used to suffer severely from fatigue. Pain in my bladder used to keep me up at night. I’d wake, needing to go to the toilet, and feeling I was being stabbed in the bladder. The surgeon found endometriosis on my bladder and removed it. Now, I sleep through the night,” Irene says.
Susan McCarthy has heard herself described by doctors, not unkindly, as “the girl with the kissing ovaries,” so extensive is her endometriosis. She has had cycles of recurrent ablation surgery, followed by 12-18 months of wellness.
But now Susan, a legal executive, is in a quandary. “My last surgery, my fifth, was over two years ago. I found it extremely difficult to recover. I had a bleed during surgery and I had drains in afterwards. I feel my abdomen didn’t recover. It was so bad, I don’t know would I have surgery again,” Susan says.
Yet Susan’s keenly aware, each month, of her symptoms progressing. She wants to see her consultant and — though she’s an existing patient, in the system for 20 years — there’s a two-year wait on his public list and six months to see him privately.
King would like to see a multidisciplinary endometriosis centre set up in Ireland, with an excision surgeon (specialising in endometriosis in all parts of the body), pelvic physiotherapist, counsellors, psychotherapists, and pain and fertility specialists.
“This condition is so ignored. Women are expected to just get on with it. Endometriosis is not getting the visibility it needs,” King says.
With March Endometriosis Awareness Month, EndoMarch 2020 was due to take place in Dublin tomorrow. It’s part of an awareness-raising worldwide event. Here 300 women were signed up to march, but the event has been postponed, due to Covid-19.
