Two women from Northern Ireland have told of their excruciating battle with endometriosis.
Belfast woman Caroline McElnea (40) suffered bad with periods from the age of 13 and had no idea why she was in so much pain.
Co Down woman Hayley Scott (27) said her symptoms started when she started her period at around 12, feeling alone in her battle for years.
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Caroline told Be : "I would faint in assembly and have excruciating pain but I just dealt with it because I thought this was normal, it got worse and worse until my GP referred me to see my first gynae consultant at 17. I was put on different tablets but nothing settled down. I was sent to A&E a few times, as no one knew why I was in so much pain or why I was bleeding so heavily.
"I was given painkillers and sent back home, at this point I think I had seen about five consultants over the years. It wasn’t until I was 26 and had my first laparoscopy that it showed I had endometriosis. From this, I was put on Zoladex injection which I had injected into my tummy area, but I could only be on this short term. I had my second laparoscopy two years later, again removing any endometriosis I had. By the time I reached my early thirties, it was back and it got really bad.
"At 34, I had a total hysterectomy thinking it would cure it, but now I know there is no cure for endometriosis.
"The worst time for myself was when I hit my early thirties, I was bleeding from my bowel as well as having a constant period, I was in so much pain and had to take time off work."
Caroline said she suffered from bad depression after her hysterectomy and her hormones 'were all over the place'.
"I was going through the menopause, and the feeling of loss I had was overwhelming.
"I felt at the time I had no one to turn to as I didn’t want to seem like I was complaining after so many years before going through what I can only describe as 'the worst'.
"So I thought I could try to just get over it, which just doesn’t work. I feel I had no real support and I didn’t want to be a burden to my friends and family. It wasn’t their fault, I just never talked about it as I tried to hide my grief," she added.
The Belfast woman has been having problems with her bowel over the past year.
Caroline said: "My GP, knowing my previous symptoms, put me back on medication and I am waiting for an MRI scan and an appointment with gynae."
Hillsborough woman Hayley told Be: "My symptoms began when I started my period around 12 years old but I was always treated as though I was 'just unlucky' and that it 'ran in the family'. It wasn’t until about 2016 that I pushed for more answers as I began to really struggle with sciatica. I remember at that time thinking that I knew something was wrong and that I was going to need to push for an answer.
"I think I realised how bad my symptoms were at the end of 2019, this is when I started the process for going private. I was having to limit my diet and was struggling daily with pain that I just couldn’t manage. Nothing seemed to help.
"Having endometriosis that affects the bowels makes it really tricky going out, you’re always thinking about where the nearest toilet is and, 'am I going to be eating?' If so I need to know where, and what I can have that will cause the least pain."
Hayley said it was "bittersweet" when she received her diagnosis.
"Finally having confirmation that it wasn’t in my head and that I was right to keep pushing for an answer was such a relief and total validation. But at the same time, I was feeling worried about what this meant for me in the future. I knew after surgery I’d need another in the near future, and that there was a possibility my fertility could be impacted by this condition.
"I had my first surgery in October 2020, nine months before I received my phone call from the NHS. The outcome from that laparoscopy was that I subsequently needed a second surgery as there was so much involvement with my bowels and appendix. I had that surgery in March 2021.
"No one really gave me an idea that each symptom could be linked. I had been told it's ‘just this’ and ‘just that’ for so long. You really do start to question your own body. I think so many don’t get to see how the condition can affect many different parts of your body and it's unique to each person. Not only that, but it impacts every part of your life - from work to friendships to relationships, it’s not just the person with endometriosis who’s impacted."
She added: "Getting diagnosed during Covid definitely made things trickier. There was no support, nowhere to turn to locally for advice. This is what led me to start the Facebook group 'Endo Warriors NI' around the time of my second surgery.
"I knew I needed to start helping to improve support in Northern Ireland. I myself felt so alone throughout my journey and although my family and friends were so supportive, having people going through the same thing brings another level of comfort.
"In January 2022 I got to undertake training to become a support group leader for E ndometriosis UK and that’s where I met Caroline and we are now working together to give that missing support to many women across the country, as well as educating those who maybe don’t know that they have endometriosis and who are in the same position I was just a few years ago."
Caroline and Hayley both now run Endometriosis Warriors NI.
Hayley said: "Now with face to face and online meetings starting this Wednesday (30th March), we hope to take this group to the next level and to forge stronger relationships between the group members.
"Additionally, we would love for the group to start making noise about improving our care, changing the menstrual wellbeing education in schools and making young girls aware of what’s not normal earlier - to help drive down diagnosis times as well as the cost to the health system. Also, improving the aftercare and options explained to those post-diagnosis [is important to us] as this appears to be so inconsistent, as well as pushing for a fully functioning endometriosis specialist centre (which is currently a provisional centre)."
Caroline added: "When I seen the opportunity come up with Endometriosis UK, I wanted to get involved with a support group. I did my training with them, met Hayley and after talking to her, I didn’t feel alone.
"There are so many women going through the same thing and we really want to help. As Hayley had previously set Endo Warriors NI, I became joint leader.
"I found that with the group, I was able to chat to other ladies all over who were going through the same problems. Just to know I was not alone helped me.
"I really want to help other ladies know that they are not alone at all, they have the support from us. They can come and chat to us about their symptoms. We are providing a safe and confidential space for them to do this. We also want to create as much awareness as possible on endometriosis."
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