We need a proper multi-disciplinary approach to endometriosis and a dedicated centre with specialist nurses that can be contacted for advice and support. 
Please please please help and sign!think of your wife, girlfriends, daughters, nieces and best friends. This is no way to live! Thank you for reading!

This is my story. 

At the age of 14 I started to experience extreme pain at around the time of my period and ovulation. I was seen by my doctor for blood tests and swabs that all came back normal. I was then referred at 15 to gynaecology for further tests, which again came back “normal” and was put on different medications and pills that didn’t make a difference. It was then that I heard of the word endometriosis from a friend who was suffering from this condition, and I brought this up to my gynaecologist. I was told since I was 15 years old that I was “too young” and didn’t have enough of the symptoms as I was having the symptoms outside of my period as well. I now know that pain can be any time of the month especially around ovulation time too! Every time I was seen I kept asking the same questions and was met with the same response and finally in August 2022 when I begged to be referred for a laparoscopy, my gynaecologist said she would, but it would be a 7 year waiting list for this surgery.
 I went private and in February 2023 I was diagnosed with endometriosis. This was very emotional but very reassuring for me that I had been right all along and hadn’t been making this pain up after hearing a doctor at 16 in a&e saying, “she’s just a young girl who can’t handle her periods” .I would finally be believed. The endometriosis was removed as much as it could be by ablation and a coil was placed. I was told at my post op appointment by my surgeon to not suffer in pain and to get in contact with him, as there was more they could try for me. A week after surgery I ended up in a&e with a womb infection and was admitted for 3 days but after that surgery seemed to help settle the pain a little.
 I was still back up and down to A & E, with abdominal pain and after further procedures and scans, I had to have my gallbladder removed by emergency surgery in April 2023. They found adhesions, my gallbladder was chronically inflamed and was also filled with gallstones. We still haven’t been told by gynae if this could have been endometriosis or not.
Life got a little better between some flare up days. In July 2023 the pain intensified and the doctor and a&e visits began again.  We tried to get in contact with my previous surgeon who did agree to see me, but that it would be mid October before we could get an appointment. Each time I contacted my own GP, I was told to go to a&e as there was nothing more they can do. I have waited in a&e for up to 18 hours, vomiting and screaming in pain with no privacy or dignity, being given fluids and pain relief. I was told at one point by a doctor “you know more about this condition than us”. I was admitted end of September for a week for morphine and tests, but during this time the switch of consultants and change of plans and opinions within a week made the whole process much more stressful. While I was here, I was meant to be seen by my own surgeon who we didn’t get to see as he was called away to an emergency.  We knew we had an outpatient appointment with him 3 weeks later where we could get more clarity. I was discharged on morphine, codeine, paracetamol, buscopan and other medication to take for pain on a daily basis and was also referred for an outpatient MRI to see where the endometriosis had spread to. At my outpatient appointment, again, I was told he had been called to an emergency and was seen by another Doctor we had never met before. He told me that with the symptoms I was having I would need more surgery and possibly have to be fully opened up depending on how much the endometriosis had spread. Potentially, I need a stoma bag due to how much my bowels were being affected. We also had asked about the mri that had been requested and when he looked it up, it was realised it had been rejected due to not enough information on the referral letter. We were told not to panic as he thought surgery was indicated anyway. Two weeks later I was back in a&e. While there I had what my mum thought was a rigor, was given iv morphine and waited for gynaes opinion. I was sent home as I was told they could only give pain relief that I already had at home although  if I wanted, they would admit me for it through an iv as I wasn’t keeping anything down. The rigors got worse and turned into what looked more like seizures, so my mum brought me up to a&e again where I was brought through straight away for morphine and paracetamol. I was then sent out to the waiting room and eight hours later had a seizure with other patients commenting that I shouldn’t be sitting there.  I was brought to a cubicle and then finally up to the gynae ward and admitted. This is where a doctor witnessed the seizure and the following night after witnessing another one, ordered an emergency brain ct at 2am and made a referral for neurology input. The scan was clear, and neurology told us that the seizures was my body’s reaction to the pain as it couldn’t handle it anymore. The seizures kept happening, but I was seen again by different gynae consultants. We were told surgery was not going to happen and I was going to be put into medical menopause at 21. This was a pretty emotional step to have to take as all I’ve wanted is my own babies and I was told there was a risk my ovaries wouldn’t wake up. Not only was this upsetting, but also that I would be having menopausal symptoms to deal with at 21. I was also told I’d go into a flare up for the first few months and the pain would probably get worse. 

I’ve been seen by pain team, and they told me I would have a lidocaine infusion but when my mum called to ask when it could be done, we were told it would be after Christmas. My bowels have also stopped working and I’ve had to use two different laxatives, 2 different suppositories, enemas at home to then have to go to hospital for them to use a stronger enema. When we called pain team again a few weeks later to see if we could go private as the seizures were getting worse, they came back saying they weren’t happy to give me it anymore until neurology had seen me again. The seizures I have been experiencing have gotten much worse, having 3/4 in a row and not coming out of them so my mum phoned an ambulance, and I was taken to hospital. Neurology said again it’s my body not coping with the pain, but it’ll be down to pain team to decide whether or not I get the lidocaine infusion. The gynae team was also called but said that they couldn’t do anymore as I’m in flare up. I was never told side effects that I could experience, and I found this to be very distressing when I started bleeding again when I was never told this could happen. This whole experience I have had no proper care, plan or continuity from a consultant and with a condition that is so life altering and that women will have to live with, I feel like the least we could get is a proper relationship with our consultant. 
NI has no endometriosis specialists and only consultants that have interests in endometriosis. The waiting list for even a diagnosis for endometriosis is 7 years and early intervention is key. Patients should not have to do their own research, when going to their doctor they should feel they’re getting the proper care and highest treatment. The way endometriosis is removed in surgery is by ablation and we know this is not the gold standard care, excision is. Northern Ireland has to do better for our women, we should not be left in this pain.
 We need a proper multi-disciplinary approach to endometriosis and a dedicated centre with specialist nurses that can be contacted for advice and support. 
Please please please help and sign!think of your wife, girlfriends, daughters, nieces and best friends. This is no way to live! Thank you for reading!