Young Kilkenny woman with endometriosis was told three times she had ovarian cancer

A young woman from Kilkenny has revealed that she was told she needed urgent surgery to remove cysts from both ovaries but months later was told her case was "too severe" for her local hospital to help. 

Aoife Byrne, a 25-year-old from Tullogher, was diagnosed with endometriosis in 2024 after suffering with the disease for most of her life.

She has opened up about what living with the disease has been like and how difficult it is to navigate the health system while trying to get help. 

Endometriosis is a condition that sees the growth of tissue, which is similar to the inner lining of the uterus, growing in other parts of the body, particularly near organs.

"My abdomen is always sore, I get severe pains, and I often can't put weight on my legs because if I put weight on my legs, it feels like my abdomen is going to explode," Aoife said. 

She first went to the doctor about pains when she was about 16, as she had suffered with heavy bleeding and excruciating cramps on the first day of her period.

READ NEXT: 'You wouldn’t believe what she’s put up with' - mum of inspiring Kilkenny teenager

A GP put her on the contraceptive pill, which she remained on from the age of about 16 until 22 or 23 when she was in her third year of college. 

Heading into her final year of college, Aoife started to get really sick. 

"I'd wake up every morning bawling my eyes out in pain. I couldn't sleep. I was just tired all the time. It was affecting my mood, like I was anxious all the time," she said. 

Aoife spent days in bed before going to the campus doctor and explaining that she had irregular periods, ongoing pain, and low mood.

"At the time, I thought it was like a UTI or some form of infection. So, they did a few different tests and the first thing they told me was it was ovarian cancer, which was bizarre," Aoife said. 

"That was obviously a total misdiagnosis. I didn't even take it seriously cause I was like, there's no way you can tell that from just looking at me," she added. 

This was one of many misdiagnoses, with Aoife being told on three different occasions it could have been ovarian cancer that she had.

She was advised to go back to her GP, who she visited once every two weeks for about a year and a half. 

She was regularly told she had a different infection, which was being treated with antibiotics making her symptoms go away but eventually they would come back. 

"It was a cycle of constantly being on antibiotics, being sick from the antibiotics, getting sick again over and over and over again. I also had lots of scans and MRIs and internal and external ultrasounds on multiple occasions, and nothing came up on any of these," Aoife explained.

As she was in her final year of college, managing her work, social life, and the sickness was really difficult.

Because she was so busy and at times stressed, the symptoms of her illness were getting worse and all Aoife really wanted was an answer. 

Once her scan and test results were back, the GP called to say that nothing had come up on them. 

"I just burst into tears and asked 'what do you mean? What are we going to do?'," Aoife said. 

The doctor was honest in saying that he didn't know what was happening and the sickness had gone past what he knew and understood. 

Aoife respected his admission, willingness to help, and his proactiveness in referring her to a consultant in Kilkenny, who she met in May of last year. 

After not even 10 minutes with him, she was told that it sounded very much like endometriosis and she was scheduled for surgery less than two weeks later. 

Surgery is necessary for an actual endometriosis diagnoses as the tissue does not show up on any form of scan or test.

"With endometriosis and the endometrium tissue, it's this sticky stuff. So wherever it's growing, it kind of sticks everything together, it's not just growing on one place. That's the issue. All your organs can just be stuck to each other," Aoife said.

"You're going in knowing that you'll have a surgery but you don't really know what's going to happen in it. Firstly, you don't know if there is going to be endometriosis and if there is, you don't know where it is, how bad it is, if they're going to be able to remove it. It's kind of a weird surgery because you don't really know what you're waking up to," she added. 

After the procedure, Aoife was told she had stage three endometriosis, of which there are only four stages. 

It was growing at the back of her uterus which was in turn causing her bladder to protrude in her belly.

During the surgery it was also discovered that Aoife had pelvic congestion syndrome which meant the veins and arteries in her pelvis were blocked and inflamed, making all of her symptoms worse.

The Mirena coil was put in during the surgery as it slows down the growth of endometrium tissue. 

"I got so much relief from surgery. I got a new lease of life. I felt so much better. My mood got way better. I was sleeping more and I had way more energy. I literally just felt totally different," Aoife said. 

"I didn’t realise how bad things were, until they were better. I felt myself again, despite not knowing I had even lost myself," she added.

With endometriosis, the tissue often grows back and people will be required to get more surgeries, but generally, people get five or six years of relief after having one. 

For Aoife, that wasn't the case.

"I feel endometriosis is going to be considered a form of cancer because it has so many similar characteristics. It's a foreign tissue that grows in the wrong places. There's no cure for it and it can affect any of your organs," she said.

Roughly six to nine months later, Aoife started to get sick again so she went back to the consultant.

She was told that wasn't normal and it was suggested that Aoife went into early menopause; something she did not want to do considering she was just 25. 

Aoife was also on the public waiting list so in the meantime, she had joined the Endometriosis Association of Ireland and started to do some research into the disease.

Acupuncture is something that seemed to be suggested so Aoife went and found it quite beneficial. 

"She was working on regulating my system. She was able to work on my hormones, my mood, my skin, my bloating. I got so much relief from that," she explained.

Then randomly one day, Aoife got a phone call from the hospital to say that she had an appointment in two hours.

They couldn't tell her what it was for and because she had been on the waiting list for so long, Aoife couldn't remember what it was for either.

Aoife decided to go to the appointment, where she was left waiting for four hours in the waiting room before being seen. 

When she was finally called, she felt relieved that she was seeing a woman. 

"It was a female doctor, which I was really like happy about because my GP and my private consultant were both males. Despite the fact that my GP had gone above and beyond for me, I welcomed the chance to talk to a woman. She went through my case and she did another internal and external ultrasound and she said that I an endometrium cyst on both my right and my left ovaries," Aoife said.

Because of the position of the cysts, Aoife was told she needed urgent surgery but that it was too recent after her last surgery to do one. 

Instead, she was prescribed a new medication, which was really helpful, and was told to come back in three months to schedule the urgent surgery. 

While waiting and with symptoms getting worse, Aoife continued with her acupuncture and took other steps, such as cutting out gluten, to improve both her mental and physical symptoms. 

Anytime they did get really bad, she reminded herself that she would be getting the emergency surgery shortly and soon she would be okay.

Unfortunately, that surgery still hasn't happened. 

On November 3, Aoife had the follow-up appointment from the one she was told she needed urgent surgery in, but it was with a different person. 

"I was really disappointed about that because I had got on really well with her and like she just seemed really good," she said.

Aoife was seen by a doctor, who told her that the consultant present would not see her. 

There was incorrect information as well as information missing from her file, including the two scans she had in June where it was determined she needed the urgent surgery.

There was also reference made to an appointment on Aoife’s record detailing an appointment which had not occurred.

"I didn't get any opportunity to actually see my consultant either. The doctor who was talking to me on behalf of the consultant basically discharged me from their service because she said my case is too severe for anyone within their department," Aoife said.

She left the appointment upset and worried about the fact she was told over four months ago she needed urgent surgery, yet there was still no sign of getting it anytime soon. 

When Aoife expressed her concerns about her worsening symptoms, a doctor remarked that "endometriosis is not that bad,
and can’t do any serious damage" which left her feeling dismissed and frustrated.

After being on the public waitlist for over a year, she felt disheartened and neglected after an interaction with those who she was depending on to help her.

She was told she has been referred to a specialist endometriosis clinic in Cork as there was no specialist that could deal with stage three or four endometriosis in the hospital or public health system, despite the fact that one in ten women have it. 

Aoife assumed she would be waiting years for an appointment in Cork so she decided to contact a private consultant in Limerick.

However, Aoife says if that consultant isn't in a position to do the surgery, she will be travelling to Greece for it.

"He's meant to be really, really good. A lot of people in Ireland go to him," she said.

She expressed her gratitude for being in a position that she can access private health care, but sympathises with other women who cannot and are left without the care they need.

Since joining the Endometriosis Association of Ireland, Aoife has had the chance to hear the experiences of those in the same boat as her.

That's how she knows that so many other woman travel abroad for their surgeries.

She also recently attended one of the many Sinn Féin public meetings that were held across the country to raise awareness on endometriosis and the lack of understanding of the disease in Irish healthcare.

The campaign was started by Mary Lou McDonald and Maria McCormack as part of a motion being brought forward by the party for better care for patients. 

Aoife spoke with both women at the public meeting and she was then invited to the Dáil where Sinn Féin had a debate with the Minister of Health about getting that better care and setting up a framework for it. 

"I think there was maybe about 30 of us at that, which was a really cool experience because we got to go into the Dáil itself, and meet each other, talk about it. It was really emotional as well because I'm in a position that I can still live my life pretty normally, but it was eye-opening to see how severe some cases are," Aoife said.

At the moment, endometriosis is seen as a gynecological disorder, despite it affecting the whole body. 

Part of what Sinn Féin is calling for is better recognition of the disease so that people with endometriosis who have lost their ability to have children or who have had to have hysterectomies are not being seen in the same ward as new mothers meeting their babies for the first time.

"There's so many little things that are just not considered, if that makes sense. It should be treated as a multi-organ thing," Aoife said. 

"All these events are always really emotional because you're hearing people talk about all these things that have happened to them, but that was a really good opportunity and really nice to be part of," she added.

Aoife says it's really positive to see that people in the Dáil are doing something to help those with endometriosis. 

She contacted Mary Lou and Maria after her appointment earlier this month to express her disappointment.

"It's nice to have that contact with them and to have someone that is kind of fighting your case," she said. 

The Endometriosis Association of Ireland has also been a great resource for Aoife in terms of connecting with others who understand the struggle of living with the disease. 

Her friends and family have been a fantastic support too and they have been happy to learn more about endometriosis as Aoife does.

"My friends and my family have a good understanding of it now because I'll say to them every day 'I'm in pain, I feel sick,
I'm in pain,' so they have a good understanding of it. I think overall, it is just a really crap thing to have and there's just not enough recognition or understanding," Aoife said.

She feels lucky that she has such a great support system and that she is able to avail of acupuncture and lymphatic drainage, even though it is quite an expense every month. 

"My acupuncture is €80 a month and the lymphatic drainage is €75 a month. Even though those things are technically optional, they're some of the only things that give me relief. So, I feel I have to do them. I choose to do them, but at the same time, I'd be a lot sicker if I didn't," Aoife said.

She also uses a hot water bottle on her abdomen daily and takes prescribed painkillers as paracetamol and other over-the-counter pain medications don't work.

Aoife feels she has definitely gotten better at pain management through researching and making many life changes.

Being aware of and more in touch with her body and sickness has also helped. 

"You have to think about everything. When I leave the house, I have to make sure I have these prescribed pain killers with me. If I'm having a flare up, I have to tell my friends, I might have to go home. I can't basically do whatever I want, whenever I want, because I have to consider all these different things. On the larger scale of things, I'm very lucky but at the same time, it does really, really affect your day-to-day life," Aoife said. 

She knows that certain activities can lead to a flare up and therefore always needs to be a step ahead of her pain.

"I need to be ready for the fact that I'm going to get into serious pain. If I'm going to the gym, I have to think about what kind of exercises I'm doing. If I'm going for a run, I need to make sure that I can go home straight after and put hot water straight on my stomach. Even nights out, day trips, holidays; I'm going to have to think about everything all the time. Even sleep, I have to make sure that I get enough sleep because if I don't get enough sleep, I will completely flare up," she explained. 

Aoife shared one instance where she had to deliver a presentation of her thesis, knowing that she would get seriously unwell the following week.

"It was such a good thing for me and my career, but I knew that day was going to stress me out, that I'm going to be written off for a week now. I was going to be stressed and nervous on that day but I also knew I was going to be sick, really sick over the weekend because of this stress," she said. 

December will be much the same as she has shared that she will not be getting her acupuncture or lymphatic drainage next month in an attempt to save some money for Christmas.

"You shouldn't have to choose between feeling good and your health and saving a bit of money because there's not proper infrastructure and the system is just not set up for that. I know for December I will be way sicker," Aoife said.

Aoife knows she is lucky to have the drive and determination that she does, but often feels for the younger generation of girls who may not have that yet. 

She worries for those who might be a bit more shy if a doctor tells them they are discharged from the public health system or just dismisses them generally. 

All Aoife can do is advocate and hope that change comes sooner rather than later so that the next generation of girls don't have to go through the same fight that she and her fellow endometriosis survivors have had to.

"Although my situation has improved, it will never be over. I know that I will need another surgery soon, and may need more for the rest of my life. I know that I might not be able to have children. I know that I’ll never really be able to let lose like other people because I need to take such care with my body. I know that my mental health may always suffer. I know that my friends, family and partner will always have to be understanding of my disease. And I know there is more that needs to be done to support me, and all women," Aoife said.