With hindsight, my endometriosis journey began around 1998 when I was 15 years old. I had always had some pain with my period since it started at age 11, but it really ramped up in my teens. My older sisters both had really painful periods with nausea and fainting, so I just thought everyone was the same. I was eventually put on the pill at 17 and remained on it pretty consistently throughout my life. It did mask a lot of symptoms, though I still generally had a lot of pain every month and I was constantly fatigued.
The fatigue got much worse in my 20s and with every blood test coming back normal I was just prescribed anti-depressants and left to feel like it was all in my head. I also developed debilitating gastro and bowel symptoms around this time, but again all tests were clear so I was told I had IBS and to eliminate wheat and dairy.
In 2017 I came off the pill properly for the first time in adulthood. About 6 months in, my symptoms came back with a vengeance. I was back to the nausea, vomiting, extreme pain and bowel symptoms of my teens. In 2018 I started getting recurrent UTIs, sometimes without evidence of infection, and sex became very painful. I saw 4 different GPs at this time, who all dismissed me.
In 2019 I saw some people on twitter share their stories of endometriosis and was struck by how similar their stories were to mine. I started to do research, aided by Endo Aware NI and Endometriosis Ireland, and realised that I might have endo too. I went back to my GP suggesting that maybe this was the problem, but she refused to refer me to a Gynaecologist because they would only put me on the pill, which she could do, and which I was refusing as I felt it adversely affected my mental health and wasn't fixing the problem anyway.
Eventually in February 2020, when I was now in almost constant pain and struggling to walk at times, I managed to get another GP to refer me to a Gynaecologist who I saw in Derry in August that year. This endometriosis 'expert' told me that given my age it would help if I got pregnant, that over 50% of the time during laparoscopy he didn't find anything, and that some women just had sensitive pain receptors in their pelvic floor and I'd have to learn to live with it. Broken and in tears I decided to take the advice given by other Irish endo warriors and find the money to travel to England to see a genuine excision expert.
I considered a few recommended surgeons, but because I was being supported by Benenden Healthcare at the time, I had to choose a surgeon who operated from one of their hospitals. After much research I had a tele-consult with Mr. Hassan Morsi based at the West Midlands Private Hospital, in late January 2021. That was the phone call that changed my life. Mr. Morsi could not have been kinder, more supportive, or more validating. He was the first medical professional who believed me and didn't dismiss my symptoms. His expertise shone through and he referred me for an MRI while reassuring me that if it was 'clear' that didn't mean I didn't have endo, and that based on my symptoms he recommended a laparoscopy with a view to excising the probable endometriosis he would find. The MRI was clear but I went ahead and booked to have surgery with him in April 2021.
Infuriatingly, Benenden told me at the last minute (three weeks before) that they wouldn't cover my surgery costs after all because there was a chance, based on my symptoms, that Mr. Morsi would have to excise endo from my bowel and they only covered pelvic excision, not bowel surgery. I took out a loan and went ahead anyway.
I traveled during the Covid restrictions but the isolation and long journey was absolutely worth it. I was treated with care, respect and expertise the entire time. Mr. Morsi met me in person for a consult and examination a few days before the surgery and showed me a video of a previous excision he had done so that I knew the procedure in advance. He sat and answered all of my many questions, even the ones I had already asked. After an almost 4 hour surgery he came to me and told me he had removed extensive endometriosis from my pelvic walls, bladder, bowel, pouch of douglas and rectum. He provided me with photographs of my surgery and sent me copies of all follow up reports and letters. He was available to answer any questions in the weeks after my surgery, and followed up closely until my official discharge from his care a couple of months later.
I am now 10 months post-excision and it has been a long road; I have taken longer to heal and recover than I expected, though Mr. Morsi did tell me that because of the extent of my surgery it could be 12-18 months before I felt the benefits fully. Overall though, my quality of life has improved more than I thought possible. I'm no longer in crippling pain, my bowel symptoms have disappeared and I feel like I have my life back. On Mr. Morsi's advice, I started working with a pelvic health physiotherapist here in Derry 5 months after my surgery and she has been amazing. Physio has definitely been a huge part of my recovery process and has helped to relax my pelvic floor and deal with some muscular and nerve issues in my pelvis and hip that I have been left with after 24 years of chronic pain. I have also decided to see a therapist, as now that my body needs less attention, it's time to process and work through the journey it took to get here with all of the stress, pain, sadness and anger it brought. Treating endometriosis takes a multi-disciplinary approach, with everything from acupuncture to physio and beyond. With expert excision at the heart, relief is more than possible and everyone with this disease deserves relief.
I would encourage anyone with endometriosis to consider finding an expert excision surgeon who will treat them with respect, care and expertise. The financial burden is hugely unfair, and is daunting, but for me it has been so worth it. I'm not in constant pain any more, and I couldn't possibly put a price on that.