As a teenager, I started to lose my confidence as extremely painful periods dominated my life. Whilst my peers were enjoying various aspects of growing up, I had a lot of anxiety around my menstrual cycle. Periods were horrendous with heavy bleeding, abdominal and pelvic pain, constipation, weight loss, nausea, and hot flushes. By the time it was over, I had no energy left to do anything. The vicious cycle continued month after month with me often ending up in A&E.
After complaining to my GP about my symptoms for five years, he finally referred me to a private hospital at the request of my dad. I could not wrap my head around why I had not been taken seriously in all the time before that. A diagnostic laparoscopy confirmed I had endometriosis stage 4. There was no cure and at 20 years old, I was too young to have it removed.
I managed as best I could on the pill back-to-back and in 2012 things took a turn for the worst. I was on my period at home alone and realised I could not get out of bed. It felt like forever waiting for someone to come home and help me. My mum tried to lift me up, but this was impossible as it felt like there was a heavy weight on my chest. My dad made the decision to call for an ambulance and in hospital they confirmed I had a right pneumothorax. Over a litre of fluid had to be drained from my chest. I remember this hard thick tube being pushed into my side. I was not on any pain relief and just cried out hoping someone would take my hand or reassure me.
Hours later, I was lying on a steel table with bright lights on me. A multidisciplinary team were discussing my case. After surgery I was informed by the stoma nurse that I had a colostomy bag after a bowel resection. At a follow up appointment, a gynaecologist laughed in my face when I suggested the endometriosis could have spread to my chest. In addition to this, a local respiratory team cancelled my referral to a specialist thoracic department because they could not see anything wrong.
Despite having major surgery and physically looking different, my mentality was quite positive. I was grateful to no longer be in pain or experience periods due to Zoladex injections. Over the coming weeks and months, I had to learn what foods my body could manage and bought new clothes to feel comfortable and confident when out and about. Fortunately, my colostomy was reversed after 13 months.
I was referred to an endometriosis centre and this was a positive experience as I was able to speak to specialists, undergo various investigations, and try different medication. It was here that I learnt IVF would be my best option for having a family. At the time I was not eligible for funding nor in the right relationship.
Two years later, I faced discrimination in the workplace due to chronic illness. I had declared my endometriosis early in the recruitment process. It was only once I was offered the job and told I could hand in my notice that things started to change. Two men in occupational health made the decision that I was unfit for work due to having significant time off due to surgery in the past. I had already left my current role and found myself having to go to the Jobcentre, apply for jobs and rely on my savings. My prospective employer really pried into my health and contacted my gynaecologist to find out if I was protected under the Disability Discrimination Act. Eventually, after threatening legal action I was offered the role. I really felt that I had a point to prove so would use annual leave as sick leave and meticulously plan each month and the time I might need off to rest and for medical consultations.
In 2017, my partner and I decided to do fertility treatment. My GP confirmed I was eligible for NHS funded treatment and I had to choose a clinic. At the time, I did not know anyone who had been through IVF. I simply chose a hospital because it had a good reputation overall and it was easy to get to. My first cycle was tough, and I did not feel like they took my chronic illness in to consideration. Soon after a fresh transfer which was unsuccessful, I was admitted to hospital with OHSS. We had eight embryos frozen, but I was not aware at the time that I could ask about the quality of them. The experience was painful and off-putting.
We took a good eighteen-month break from treatment, travelled, got married and got on the property ladder. In the summer of 2018, we had our first frozen embryo transfer (FET). For the first time ever, I saw the two lines on the pregnancy test. We were over the moon with this news. But it was short lived as our first scan was a great concern to the clinic and they sent us straight to their sister hospital for emergency surgery. I never thought I would experience an ectopic pregnancy and I was mad at my body for once again fighting against me. The consultant told me it was most likely caused by endometriosis in the fallopian tube. I found myself questioning why I had never had the endometriosis removed? So far, my experiences had been to investigate and identify it but only to deal with it seriously when I ended up in life threatening situations. It was a really difficult time because we were so happy being pregnant and then in an instant it was all over. Over the next two years, close friends shared their pregnancy and baby news. We had the sense of feeling left behind.
In 2019, I tried to push my body to cope with more treatment than it could managed. Two frozen embryo transfers were unsuccessful, and my breathing issues returned. My symptoms included shortness of breath, a heaviness in my arm and chest, sharp pains around my diaphragm and difficulty walking and climbing stairs. I was diagnosed with a pleural effusion in the summer and had to have over a litre of fluid drained. Weeks later, the fluid returned, and I was referred to a thoracic team to investigate further. I really felt listened to and they understood my situation i.e. trying to have a family but struggling with the impact of fertility drugs. In December, I had surgery on my right lung and diaphragm. I spent twelve days in hospital and was discharged on Christmas Eve! Recovery was long and I got worse before I started to get better. But my quality of life greatly improved overall.
During the pandemic, I explored different fertility clinics and am now at a private clinic which treats me as an individual and has experience in helping people who have chronic illness as well as recurrent implantation failure. The care is tailored to our needs. Our journey so far has included two egg collections, six transfers, one ectopic pregnancy and salpingectomy, a hysterosalpingography, and an Endometrial Receptivity Analysis. I do not know what the future will hold but I feel hopeful that one day, we will get to meet our rainbow baby.
Written by Guest blogger, Nadine Lewis exclusively for Syrona Health