Fitness instructor Nicky Lingwood (42) thought painful sex and debilitating period pain were just part of being a woman. As Endometriosis Awareness Month begins, she talks about life with the condition — before and after her diagnosis
It’s often dismissed as nothing more than a ‘bad period’ or ‘women’s troubles’ — yet endometriosis is one of the most commonly seen gynaecological conditions, causing a considerable negative impact on quality of life for women worldwide.
In Ireland alone, one in 10 women are living with the chronic disorder, with an average wait time of nine years before receiving the correct diagnosis. While waiting, many will suffer excruciating pain rendering them unable to work, socialise or even maintain a sexual relationship.
As pain is notoriously hard to describe and pinpoint, sometimes the red flags for endometriosis are often brushed aside, meaning that affected women simply ‘live with it’. Women like Nicky Lingwood, who, after more than five years of crippling pain, was officially diagnosed in 2013 at the age of 36 after she underwent laparoscopic surgery (a procedure used to examine the organs inside the abdomen).
Pre-diagnosis, the personal trainer from Naas in Co Kildare, had been told she had irritable bowel syndrome, was coeliac, and may even have Crohn’s disease. The varied symptoms seem to hinder diagnosis as the condition contains a confusing mélange of overlapping symptoms — like sudden flare-ups with chronic inflammation, abdominal pain, bowel pain and fatigue — which is one of the reasons mum-of-one Nicky is calling for greater understanding and awareness, especially when it comes to diagnosis and treatment options.
To explain the condition in layman’s terms, Nicky says: “It’s like your body has got a bit confused and the tissue, called the endometrium (which is the lining of the womb), grows outside of the womb. It may end up on your fallopian tubes, ovaries, uterosacral ligaments, peritoneum, bladder, vagina, and sometimes even on your rectum, intestines, and appendix. Basically, it can wind up on other organs where it doesn’t belong.
“When that endometrial tissue is inside your uterus — where it’s supposed to be — it thickens and sheds once a month when you menstruate. Your vagina is its exit. But if you have endometriosis, there is no exit for that tissue. This can lead to period pain that can feel almost unmanageable, but it can also lead to abnormal bleeding from the endo lesions, something I was not prepared for.
“I could go out for a walk and feel an incredible stab of pain when I returned. I’ve bled on my doorstep, and could pass a clot so big, it would just fall out. I’ve been in shops where I’ve had to wrap a hoodie around myself because I bled spontaneously. Or stayed behind in a fitness class to tidy myself up when everyone had left. It’s an aspect that people don’t talk about much because quite frankly, it’s mortifying,” says Nicky.
However its effects don’t stop there. Dyspareunia, or painful sex, is something many women with endometriosis live with and is a deeply personal topic, but Nicky wants others to understand the far-reaching complexities of the disorder.
“It’s very disheartening and you can feel very unwomanly. How can you be sexy when he sees your ‘endo belly’, when it’s swollen and bloated? As someone who has always enjoyed sex, when you start to bleed during and after intercourse — and pain can last for days afterwards — well, it can be nerve-wracking, as you don’t know if it’s going to hurt. But nobody ever told me that that wasn’t normal.
“It can be tough when you’re in a new relationship. At what point do you tell them? I’m very fortunate that myself and my partner Jay communicate really well and we’re honest with each other which is key, as endometriosis can put a lot of pressure on a relationship.”
Understandably, Nicky was eager to proceed with treatment and her second operation was in 2014, when she had endometrial ablation — a procedure to burn away endometriosis deposits that line the uterus. At the same time, doctors removed a fibroid they had found during the laparoscopic surgery. “After this surgery, my well-being and mental health was much improved, my pain was more controlled and I felt back to my strong self — which is really important to me as a fitness instructor.
“I got a good three years of relief out of that surgery — not completely symptom-free; I would still have had very heavy bleeds, but I could lead something that resembled a normal life.” While the surgeries in 2013 and 2014 kept the pain at bay, it was an all-too-brief reprieve for Nicky, as her body came crashing down again. “The symptoms started to creep back over the years and gradually, by 2017, it got way worse than the first time. The pain was so bad, I ended up in the emergency department five times.
“I was sent to a gynaecologist in the Coombe and kept in for five days because I couldn’t walk — excruciating cramps left me unable to get out of bed. I lost a stone and a half because I couldn’t eat, and I bled from my bowel every other day. It gets that bad. You can’t breathe and it takes over your whole body. One day, I was bending down to put on some clothes, I remember being literally floored by the pains. I heard my own scream; it was blood-curdling. I collapsed on the floor. I thought my appendix had burst, the pain was that sharp.
“Even though I had an official diagnosis (of endometriosis) back in 2013, it was presumed it was Crohn’s disease as the symptoms were bowel-related, but I knew it was the endo.” Nicky spent the next two years going from gynaecologists to gastroenterologists and tried all different kinds of medicines, from birth control to being put into a state of early (temporary) menopause, where she says: “You swap a whole load of old symptoms for some new ones.”
Eventually, she had another laparoscopic surgery in 2019, when doctors found endometriosis on her uterosacral ligaments. “Just before I had my next surgery, I had to take five weeks off from work and I consider myself lucky as I work for myself.
“Endometriosis can have a huge impact on your day-to-day life and chronic pain can be so wearing. You go through the same process every time — you think you’re crazy. You wonder if it is really as bad as you think it is because you’ve nothing to compare the pain with. So my pain levels, ‘my normal’, are off the scale — your pain barrier becomes completely skewed when you deal with chronic pain. It’s my partner Jay who can see when I’m really sick again.
“During the surgery in 2019, I had a dilatation and curettage (D&C) and my Fallopian tubes were cleaned so we could try to conceive naturally. I was told due to my age, I should focus on the prospect of pregnancy to help relieve symptoms before another surgery. But it’s very difficult to try and get pregnant when pain is excruciating, it can leave you in tears. When I’m ovulating, my insides are on fire.”
However, after no luck with several fertility drugs at age 40, Nicky and Jay opted for IVF treatment. They did two rounds of IVF. After her last failed round in 2020, Nicky, then aged 41, made the difficult choice between trying for children and treating her endometriosis — a decision a lot of women in her position have to make.
“I had my daughter Meghan when I was 19 and like many women with endo, I had no issues the first time around. But the likelihood of having fertility problems depends on your age and, unfortunately, time and the severity of my condition were against me. While I would’ve loved to have a baby and extend my family, the risk of getting very sick was much greater than the chance of conceiving. There’s a strange sense of relief when you make that choice and you make peace with it.”
Now, two years on from her last procedure, Nicky is ready to push for another surgery as the pain is becoming unbearable once again and anxiety has become part and parcel of her life. “I’ve had to go on antidepressants to help with my sleep as my mental health was starting to suffer because of my pain levels,” she says.
“I’ve started researching excision surgery, which is a more advanced surgical technique to cut out the tissue. It cuts out the roots of adhesions, whereas the ablation technique is more superficial. More importantly, the tissue can be sent to the laboratory for histopathology.
“This examination, at microscopic level, will show whether the lesions removed were endometriosis (or not) and if there are clear margins around the lesion. When ablation is used, the tissue is vaporised and destroyed. There is no tissue to send to the laboratory. “It is so specialised — there are only two surgeons in Ireland that I know of currently performing it.
“The endometriosis unit in Tallaght University Hospital has a waiting list of over two years, with Dr Aoife O’Neill, as she balances her time between this unit and her other gynaecological work in the Coombe Women and Infants University Hospital. Meanwhile, Dr Hugh O’Connor is a consultant obstetrician and gynaecologist at the Coombe.
“To see my current public surgeon, the waiting time is 52 weeks, which is 12 more periods, 12 more bouts of knee-trembling pain. So I’m trying to go private and get my information to Dr Hugh O’Connor.
“At this point, I’ve gone to extreme measures and I’ve bought myself a speculum (for PAP smears). I document my symptoms, take pictures of my endo belly and my cervix on good and bad days, and I can only hope he takes an interest in my case.”
So what advice does Nicky have for anyone experiencing symptoms? “I spent years just dealing with my acute pain and not pestering my GP. I personally found it really useful to track my symptoms, toilet habits, diet and pain levels, before approaching the doctor. You need a very factual and definite picture to give them, and then they’ll listen to you — otherwise, it’s too vague.
“Support groups and advocacy groups are invaluable when you hear their stories — since the pain is invisible, you can convince yourself you’re crazy and your pain is not valid. The severity of endometriosis doesn’t necessarily correlate with the amount of pain you have — trust your instincts, you know your body better than anyone. If something doesn’t feel right, don’t let anyone dismiss you.”
Check out endometriosis.ie for more information and advice
⬤ Dr Siobhán Kelleher and Sinéad Hughes are researchers in the Translational Medical Device Laboratory in National University of Ireland, Galway, developing health technologies to address unmet clinical needs in female health.
⬤ They have received commercialisation funding from Enterprise Ireland to develop a non-hormonal treatment for endometriosis which Nicky Lingwood is part of.
⬤ They are also one of 13 teams selected by Science Foundation Ireland to compete in the Artificial Intelligence for Societal Good Challenge. Their team will develop a non-invasive digital biomarker for endometriosis by measuring disease-specific symptoms and applying advanced machine learning techniques.
⬤ Sinead says: “We are working on a digital biomarker to aid in the diagnosis of endometriosis (a non-invasive way to help a physician decide if a person is likely to have endometriosis so that they can refer the right women for a diagnostic laparoscopy much earlier”.
⬤ If anyone is interested and would like to volunteer, please contact email@example.com
Health & Living