'This should not be happening in this day and age' : Derry women with endometriosis speak out

The women have said that despite the debilitating condition being as common as asthma, there is nowhere near adequate levels of staffing, expertise, research or bespoke treatments that would improve diagnostics and the quality of life for those suffering from the chronic and often debilitating condition in the north of Ireland.

They also called for those suffering from the condition to be consulted with, and listened to, by health authorities, and for systematic change in education to address a long-standing 'culture of silence' around early symptoms in children and young people, menstruation and women's health in general.

The Journal spoke with a group of local women who are members of the Endometriosis Support Group, which was set up 2018 by a nurse.

Mairead Fox, Melissa Brady, Cali Morrow, Nadine Radcliffe and the other women we spoke all concurred that change was badly and urgently needed in the north.

The World Health Organisation states that endometriosis affects one in ten women and girls of reproductive age globally, although this is now thought to be a conservative estimate and it could be as many as one in seven. There is no known cure and treatment is aimed at controlling symptoms.

The condition is described as "a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility," by the WHO, which also states that "early diagnosis and effective treatment of endometriosis is important, but is limited in many settings, including in low- and middle-income countries."

This, the Journal was told by those women we interviewed, is most certainly the case here in the north of Ireland.

They also described numerous other impacts including routine bleeding and horrific constant pain, as the fibrous condition fuses 'like a spider's web' to different organs of the body, with some people developing cysts and a significant per centage of sufferers left infertile.

The treatment, they said, often involves drugs actually developed for a range of other conditions such as prostate cancer, and many of those suffering with it are on some of the strongest pain medication available on the NHS, including potentially addictive opiates, while bespoke routine surgical interventions available elsewhere are not offered as a matter of course here.

Oftentimes, they say, medical advice offered generally in the UK involves telling women to get pregnant to relieve the symptoms, while some warned that women who request hysterectomies are being denied this and told they 'may change their minds' and 'may want to have children at some point'. This has led in some cases, the says, to the condition worsening to such an extent that urgent surgery and life-impacting consequences become inevitable.

"So basically what happens with endometriosis is they think your womb leaks out of your ovaries so it comes out your Fallopian tubes and that is how it ends up in your cavity," Mairead Fox said. "'Get pregnant' is one of the first ports of call. Apparently it stops growing for a year then, and if you are breastfeeding also, because your periods have stopped. So if you are not shedding it every month you are not bleeding into your abdominal cavity, so in essence it doesn't get any bigger or worse. But that is not always the case."

Melissa Brady recalls how the condition returned after the birth of her child which resulted in her physical and mental health deteriorating. "I don't even remember now that first year, because of the pain."

Indeed many of the women spoke of the devastating mental heath impact resulting from years of chronic pain, fatigue, high doses of medication and lack of adequate treatment.

"The only support we have is the support we give each other, the wee group we have is set up by us," Melissa said.

Among the other issues they highlighted were difficulties in diagnosing the condition and the lack of key diagnostic equipment in Northern Ireland in contrast to other places. They also warned that a general prevalence of misdiagnosis is leaving girls and young women in limbo, sometimes for decades, when early intervention and treatment could have made a difference to their lives.

Mairead Fox said: "The person scanning you probably doesn't know what they are looking for. It's a very, very tiny thing on a scanner. Most women can never be diagnosed. Some women are diagnosed through an MRI like I was, because I had a 'football' of a cyst on my ovary and it was plain to see. But I had been going to the doctor with a heavy period since I was 12, and I was diagnosed at 30. But I was put on the pill at 12 and that happens to a lot of girls at a very young age. It's used to control symptoms.

"I was on the pill for 16 years, and only came off it at 28 and by that stage there were no eggs. If I was 18 and had known, I would have frozen my eggs. I'm sitting here now with no hope of having a child.

"A large per centage of women with endometriosis will be infertile and the first port of call for a doctor will be tell you to get pregnant If that is not psychological torture I don't know what is."

Cali Morrow and the others living with the condition concurred that most girls are not being taught that they can discuss such matters openly, or receiving education about the vagina and reproductive organs, normal and abnormal menstruation and associated chronic pain, as well as Endometriosis.

Cali, who was diagnosed around the year 2000 almost a decade on from symptoms first presenting, said: "More awareness for the younger generation in sex education for both boys and girls, mostly for girls, is needed to let them know your period shouldn't knock you off your feet, your period shouldn't make you throw up; your period shouldn't make you pass out. You shouldn't be sitting in the halls in school in agony. It needs to be normalised, that this is what a lot of women go through. There definitely needs to be more awareness for the younger generations."

On top of this, they warned, is the lack of research into the condition as well as the lack of expertise.

"Nothing that we have been prescribed ever has been exclusively developed and tested for endometriosis patients. We do not have anything that is for us," Mairead said. "And despite the strong pain medication we are on there are times when absolutely nothing will take away your pain."

"We don't have specialists here," Melissa added. "I would like to encourage anyone going into medical profession to take 'Endo' up as a specialist subject because there is none here in the north, and there is a big market for them. It's as common as asthma and people with asthma have clinics. We don't.

"I also agree we should be getting into schools and letting wee girls know too that they don't have to be afraid to speak," she added.

Nadine Radcliffe is another young women whose life has been devastated by the condition.

"It's my dream job to be a nurse, a paediatric nurse but I can't go to Uni because I'm too sick," she said.

Nadine, who has conducted a lot of research into the condition and previously instigated a successful blog to help others when well enough, added: "My bowel is glued to my bladder, it's glued to my back it is glued to my to my Pouch if Douglas. It is stuck everywhere and it is like chewing gum. My left ovary is going mad at the moment. I know I have a cyst there. We all know what that feels like. It is like a maraca shaking then this stabbing.

"If I posted something on my Instagram right now I would have 10 girls telling me about their stories in no time. I'm not a medical professional yet, I was just somebody who was there for a listening ear, to offer tips to help everybody. I was trying to open the talk online and I am open enough to talk about it.

"If this was a male or unisex disease, we wouldn't be in this position. This shouldn't be happening in this day and age."

Nadine previously paid to go to England to see a specialist who has offered to take her on as their patient, but the referral from NI has never happened. She said that while many medical professionals do listen and are great with their patients, including her own GP, this was not always the experience of women. Natasha wants to see a triage assessment put in place so that patients can be referred on to other jurisdictions where they can be helped and receive the surgeries and treatments that are unavailable here.

"We need to speak out on this. We need to do what we can for women like us, for ourselves, for the younger generation. I would be petrified if I had a daughter that she would go through this. And then there is parents, siblings, friends - people forget what this leaves on families, friendships, everybody. It has a rippling effect and it is tearing through people's lives. It just wrecks your whole life."

"If they would listen to the younger generation and what they are saying. When a young person knows there is something wrong with them while their friends are not experiencing the same they need to be listened to when they say 'there is something wrong with me'," Cali adds.

The women praised individual staff members in various departments and said they had experienced great care in many instances. But at the same time the lack of endometriosis bespoke specialists, medical experts who could conduct the key procedures patients elsewhere can get repeatedly which are known to make a difference, and co-ordinated inter-disciplinary teams meant that many struggled to even get appointments, with one every three years at best the norm.

Mairead said: "I was only giving surgery because I was going to die but it took seven months due to 'Covid' they said. I had a football sized cyst on my ovary. I couldn't sit. I thought I had bowel cancer."

The women also raised concerns around the 'throw-back' language used in relation to women in their situation and the lack of input they are afforded in designing and developing healthcare that wound make a tangible difference. They said they would like to meet with health bosses and Health Minister Mike Nesbitt to discuss the issues affecting them directly and the lack of any centre of excellence in the north were adequately staffed and co-ordinated teams with experts in their condition are based.

Mairead said: "There are a lot of British Centres of Gynaecological Excellence in England, where any women with endo, polycistic ovaries etc can should be sent. Under the NICE guidelines, if you have stage 4 endometriosis, which means it has impacted at least one other organ, and what's called the Pouch of Douglas - an internal area between the vagina and rectum that gets ravaged for some reason by endometriosis, once you have that you should be sent to specialist centre. There are none here.

"Endometriosis has been described as 'a benign cancer'. We should be getting some sort of conservative surgery every three or so years to remove it and it's not happening. It should be a really easy laparoscopy, in and out as day patients, to keep it under control. Surgeries here tend to be more complicated because they don't do them often enough."

Melissa added: "You do need a multi-disciplinary team because it is not just your reproductive organs, it affects the bowel, the lungs.

"We have all babysitted ourselves here too. After I came out of surgery I was handed a leaflet and told I had endometriosis. I was still spaced out after the surgery and we got home I had handed the leaflet to my partner and I said what do we do now. We went on the internet."

The women described related various stories of women presenting in severe pain and being told 'it's all in your head', 'you're imagining it', 'if you were in that much pain you'd be rolling around the floor', and even accused of being a drug addict. Often, they said, women are told they don't have it after all years after being diagnosed.

Nadine recalled how she was taken to A&E and admitted for a week after her pain levels spiked so high she couldn't hold a knife and fork and she was initially treated as a stroke patient. After a urine sample she was told she was pregnant. When she said this 'must have been the immaculate conception as I haven't had a period in three and a half years', she was told she must have been drunk and forgot she had had sex. "I rarely drink because I'm on prescribed OxyContin and told him he was seeing this because my estrogen levels were higher in the urine."

Cali meanwhile recalls: "I was sent to GUM Clinic after a medical professional googled endometriosis and decided it wasn't that. They sent me to the GUM Clinic because they thought it was a sexually transmitted disease. I cried in the car. I don't even have sex with a man, how could I possibly have that. And the girl in the hospital was like, 'I don't know why you are here'.

"It's just shocking," she added. "Sitting here as a 48 year old, nothing has changed. We all worry about the younger generation coming behind us because we have had to fight and we've got nowhere. They are going to have to take up the torch."

Another woman who has suffered for years said girls and young women often feel ashamed "like 'everyone gets on with it so what's wrong with me?'"

"People do think you are faking it," she said. "I remember sitting in the ground waiting to go into a class in school and my friends going, 'what is going on?' and the teacher coming along and going, 'you need to get up'. You don't want to say why you are off all the time because its related to your period, and you don't even have a name for it.

"It's still really scary. You are just wondering is this what is going to happen, am I going to be crippled. The past few periods I couldn't walk. I was talking to my mammy saying I might need a walking stick for when I'm on my periods. She started crying. You wonder, am I going to lose my bowel? Another organ? And they would never give me a hysterectomy.

"I went insane at one point. I'd wake up and be like, 'I'm going to die' and afraid to sleep thinking, 'I'm going to die'. I didn't have control of it. I think I'd been in pain for too long and it made me go loopy. It was like PTSD."

The group said it was vital there was more focus on gynaecology and women's health generally during medical training for doctors and other health professionals, as well as more consultation with women who are directly affected.

Nadine said: "We should be allowed to talk. I am willing to go to the Health Minister, go cross party and talk to them, to the media. They should be coming to our group and asking us. I'm not taking this lying down. It's my dream job by the time I'm 45 to be a nurse practitioner and I'm not letting anyone, not myself, or any of the rest of us, or young girls, have their dreams pulled away from them."

"There is no publicity for people suffering from this. We know there is no cure but this surgery can give you up to 5 years pain free and if it can't be done here refer us over outside of Northern Ireland to where they can. They can do that for other conditions."

Mairead added: "You shouldn't have to fight for your care. And we need a discussion about endometriosis within the Women's Health Strategy of Northern Ireland because currently it is excluding women of a pre-menopausal age. There is that big chunk of women who have experienced what we have experienced. Because we don't have any specific guidelines for it, we don't know what to say or what not to say. There are people who are lesbian, trans with it too."

"Obviously the NHS is on its knees, but there are models around the world for this," another woman added. "People have done this and done it successfully so it is just a matter of implementing it. If you can't do a surgery here you need to say 'we'll get you referred to somebody who can', and that should not be an issue.

"And we need more women in the conversation in terms of those with it as well medically. People need to be listened to. They cannot leave women with endometriosis who are waiting on a diagnosis to rot."

The Journal asked the Departments of Health and Education and the Western Trust to respond to the various issues raised and asked whether the Ministers and senior Trust officials would be willing to meet with the women.

A spokesperson for the Department of Health said: “Endometriosis is a complex condition that affects patients to differing degrees. A diagnosis is determined based on the individual’s presenting symptoms and associated medical and surgical history, as well as the results obtained from a wide range of clinical tests.

“While it is acknowledged that more needs to be done to improve diagnosis and treatment waiting times across all Gynaecology services, each patient’s experience of wait will be different, and all referrals are prioritised according to individual clinical needs. “Following the publication of the Getting It Right First Time Report in 2024, which provided a review of gynaecology services in Northern Ireland, including for those suffering endometriosis, the Department of has established a Regional Gynaecology Forum with Trust, primary care and Public Health Agency representation to oversee ongoing service improvement in this speciality and ensure that these improvements are implemented at a local and regional level. A separate Task and Finish Group has been established to consider how the endometriosis pathway can be improved across NI.

“The Department of Health is developing a Women’s Health Action Plan for Northern Ireland which will highlight the wide range of policy and service development initiatives currently in progress and outline the actions that can be delivered within current resources over the next three years to improve health services and deliver better outcomes for women. This will include, for example, work to improve maternity, gynaecology, and cancer services, ongoing planning for a mother and baby unit, as well as broader commitments to enhance public awareness around women’s health issues, provide more training and education for healthcare professionals on these issues, and to promote healthy lifestyles and tackle health inequality. “The Action Plan will also highlight where there are currently gaps in investment, or opportunities to make improvements if additional funding becomes available.

"The Department will be running a number of engagement events from January 2025 to listen to women’s representative groups and further inform the development of the Action Plan. Running alongside this, a large scale public listening exercise was launched by the Health Minister on 11 November with the aim of informing a longer term women’s health strategy in the future. The listening exercise, being carried out by the School of Nursing & Midwifery at Queen’s University, Belfast, in partnership with Derry Well Women, will run until January 31, 2025.

https://www.health-ni.gov.uk/news/women-encouraged-take-part-ni-wide-health-survey

“The Department is also engaging with relevant stakeholders including the Royal College of Obstetricians and Gynaecologists.”

A spokesperson for the Western Trust meanwhile said: “We fully acknowledge that gynaecology waiting lists in the Western Trust, as in all trusts across Northern Ireland, are unacceptably high. We sincerely apologise to our patients for the delays and the impact this may have on their care.

“When a GP refers a patient to secondary care, the referral is triaged based on the clinical information provided and categorized as routine, urgent, or red flag (suspected cancer). The urgency of the appointment is determined during this process. Most women are initially assessed at a general gynaecology outpatient clinic, where diagnostic tests may be arranged, and initial treatments initiated.

“For patients diagnosed with endometriosis, there is an option for referral to a specialised Endometriosis Clinic for comprehensive care. These patients are seen in specialist consultant-led outpatient clinics.”

A specialist provides expert advice and ongoing support both within and outside the clinic setting as needed, the Trust said.

“In addition to these services, the Trust offers further support for endometriosis patients through weekly nurse-led clinics and acupuncture sessions to help manage pain. For patients requiring complex surgery due to moderate to severe endometriosis, the Trust allocates one full day each month (equivalent to two theatre sessions) for multidisciplinary surgical procedures. Surgery for less severe cases of endometriosis is also performed regularly by the dedicated endometriosis team.

“For up-to-date statistics on waiting times, we encourage the public to refer to the My Waiting Times NI platform, managed by the Department of Health and the HSCNI Strategic Planning and Performance Group (SPPG).”

A Department of Education spokesperson said: “Endometriosis is an important health issue and wellbeing and health is core to the Northern Ireland curriculum, which aims ‘to empower young people to develop their potential and to make informed and responsible decisions throughout their lives’. Schools can respond to important updates in health messages and priorities by adapting and including new resources to best meet the needs of their learners.

“From Key Stage 2 (age 8-11) onwards, all pupils should be learning age-appropriate and accurate scientific facts about periods and be having open conversations about them. This can help to break common taboos about periods, prevent stigma, and reduce negative perceptions and behaviours. In post primary schools at Key Stage 3 (age 11-14), pupils are provided with opportunities to develop an understanding about, and strategies to manage, the effects of change (including puberty) on body, mind and explore the implications of sexual maturation. There is also a recognition that all pupils, learn that menstruation is a normal and natural part of a girl’s physical development, this is designed to not only develop their understanding but also to increase the support provided by their peers. Teaching and guidance are provided to help with the emotional, social and cognitive changes, as well as the practical challenges of menstruation such as the importance of access to period products.”