A Belfast woman spent 13 years in pain before being diagnosed with endometriosis. Now she’s on a mission to help others
Caroline McElnea was only 13 when she began experiencing very heavy periods, with stomach cramps that she describes as “overwhelming”.
“I remember fainting in assembly in school, and I went to a mixed school of girls and boys, and I was so embarrassed about it,” says the 41-year-old Belfast Trust administration worker.
“Even though I was in pain and felt so sick, all I could think about is how I embarrassing this was. When I got sent to the nurse, I was sent home and I remember being told a hot water bottle and painkillers would fix it. When I look back at that time, I think, ‘Oh my goodness, I was so hard on myself as a child’.”
When she was younger, Caroline felt it was normal to have periods like this, and she didn’t discuss it with her peers as “it was a bit of a taboo subject back then”.
“I just got on with it,” she adds. “It wasn’t until a couple of years later when it got really heavy and the pain each month was so bad, my stomach would bloat so much and I looked pregnant, that it was actually my mum who said enough is enough, this isn’t normal, and we went to see my GP.”
At 15, Caroline underwent a series of blood tests and a stomach examination, but no diagnosis was found.
“It had got to the stage where I was hardly having a break from bleeding,” she says as symptoms worsened and gave her further discomfort.
“My back was aching all the time, my stomach was constantly bloated.
“I remember someone asking if I was I pregnant, which I so embarrassed about.
“My hormones were all over the place, it was a horrible time. I remember going to A&E and they sent me to the maternity hospital over in the Royal and I actually couldn’t sit up right. They had to lay me down on a bed before I was seen.”
Caroline’s GP referred her to a gynaecologist and she had her first consultation aged 17.
“He put me on the pill to try to regulate my periods. I actually had to change the pill a few times as nothing worked, or it didn’t agree with me.
“During this time I did end up in A&E on a few occasions, due to bleeding so much and also the pain. However, I was just sent home with stronger painkillers. It was a vicious cycle. I think until I was actually diagnosed, I had seen four or five consultants.”
The last consultant performed a laparoscopy — an operation performed in the abdomen or pelvis using small incisions with the aid of a camera — which finally led to a diagnosis of endometriosis aged 26.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and Fallopian tubes. It can affect women of any age.
“I had never heard of endometriosis before. I didn’t know anyone who had the condition,” Caroline says.
“I had Googled it and saw a few celebrities at the time had come out to say they had it, but it just wasn’t an illness that was talked about.
“It was a relief after 13 years that I now had a name to what was wrong with me.
“I felt now this wasn’t all in my head, it wasn’t ‘just a period’, someone was actually going to help me.
“I started Zoladex injections which would be put into my tummy area once a month, but you’re only allowed to be on this short term, so it worked for a while but again my symptoms started to return.
“I also tried the Mirena coil, but I took a reaction to this, so I had to have it removed.
“I had my second laparoscopy two years later, but again I only had relief for a while. It came back so bad, I was bleeding nonstop and it was coming out of my bowel, too. I was in constant pain, I had to take time off work, some days I just couldn’t get out of bed. I just was at a loss.”
With waiting listings continuing to get even longer, Caroline opted for a private consultation with a gynaecologist who she describes as “amazing”.
“I saw him on the Friday and 11 days later, at 34, I had a total hysterectomy, which is not a cure and I know that myself now, so I want to stress that.”
As a result, Caroline was thrown into the menopause.
“I was angry, I was crying a lot, my hormones were all over the place,” she says,
“I was put on anti-depressants and I was so down. I kind of felt that I had no one to talk to.”
Waiting for a diagnosis and experiencing the level of discomfort and pain had a toll on Caroline’s mental health.
“I felt for a lot of years that I wasn’t believed, it was so bad, and that really plays with your mind,” she says.
“You feel no one is believing how bad you actually are, and then you actually do start to think, ‘is it in my head, am I making this worse than it is, am I a hypochondriac?’ This is totally untrue and now I know this.
“I was always active as a child, I did gymnastics, I loved to dance and that had to stop. I just couldn’t do it anymore.
“Some of the tablets I was on blew me out and I struggled a lot with trying to lose weight too, which was another issue in itself.”
Despite having supportive family and friends, Caroline didn’t want to keep telling them how she was feeling.
“It was wearing me down and I didn’t want others to feel like, ‘here she goes again’ — especially after having the hysterectomy,” she says.
“I cried so much about endometriosis that now I was crying while going through the menopause.
“At that time, I did feel so alone. It wasn’t my friends or family’s fault; I just didn’t want to drain them, and they didn’t know what was happening with the way I was feeling because I kept it bottled up.”
Just before last Christmas, she Googled support groups for endometriosis and came across Endometriosis UK, which was looking for co-leaders for Belfast.
“I thought, ‘I’m going to go for this’. I did my training in January and that’s when I met Hayley Scott.
“She started a group here called Endo Warriors NI. She is amazing. She really helped me talk about things and open up on my feelings.
“I joined her group and she asked me would I like to be joint admin. We got full backing from Endometriosis UK.
“We are now the Endometriosis Northern Ireland Support Group. We run our own support groups online and also do face-to-face twice a month.
“We have a private support group on Facebook called Endo Warriors NI and also a Facebook page. We talk to the most amazing women who are all going through their own journey with endometriosis, but it’s such a good support network.”
In the past year, Caroline has had medical problems with some recurring symptoms and is currently waiting on an MRI.
“Because of the support network around me and running the support groups, I am feeling more happier in myself, and not alone, like I felt before.
“Hayley and I want to achieve so much. We have so much we want to do to raise awareness on endometriosis; we are arranging to meet with our MLAs to talk about how we can change things.
“Further down the line, we want GP surgeries to have checklists for diagnoses of women and we would like education in schools for girls.
“We have leaflets coming out that we will put be putting in GP and women’s centres around Northern Ireland, giving details of our group and the support that both ourselves and Endometriosis UK provide.”
Caroline wants those affected by endometriosis to keep pushing for diagnosis.
She concludes: “It can be a long road ahead, but remember that you aren’t alone.
“I always say this in our group, talk about it, do not feel embarrassed or ashamed, do not feel that it’s in your head.
“Please try to be kind to yourself. Read up on endometriosis, get all the facts as much as you can.
“Join a support group where you can talk to others. We are all there to help each other.”
For information on Endo Warriors NI, search for Endometriosis UK Northern Ireland on Facebook. Please consult your GP if you are experiencing any symptoms.