Endometriosis Action Month: “Do not give up on your diagnosis and access to treatment”

I was diagnosed with endometriosis at 20 years old, after five years of visiting my GP and complaining of symptoms. He told me it was “just a bad period” but, when my father accompanied me to an appointment and insisted I was referred to a private hospital, the doctor did not ask any questions. By the time a consultant confirmed I had endometriosis, I was not surprised as I had spent a lot of time researching my symptoms. But I was frustrated that I was “too young” to have it removed despite it being found everywhere and stage 4.

I went back on the pill and did my best to manage this debilitating condition, which caused severe bloating, constipation, heavy bleeding, vomiting, hot flushes, and loss of appetite. At 25, when I was on my period, I realised that I could not get out of bed. It was as if a heavy weight was on my chest stopping me from moving. No one was home and it was very scary to be lying down in so much pain for hours alone. My parents managed to visit me and called an ambulance. Paramedics carried me out of my home and at hospital doctors told me that they had to drain fluid from my lung and operate due to a bowel obstruction. Over a litre of fluid was removed from my lung and I ended up with an emergency colostomy. The hospital also gave me my first Zoladex injection to put me into a temporary chemical menopause and referred me to the John Radcliffe Hospital. The consultants were brilliant and mentioned IVF would be my best option to conceive. Just over a year after having the stoma, the hospital was able to reverse it but, due to it taking so long, unfortunately I did not have the endometriosis removed.

At 30, my partner (now husband) and I pursued IVF as we were eligible for funded treatment. I did not know of anyone who had done fertility treatment before, so I chose the hospital in London where I was treated for endometriosis. I had no idea how long the journey ahead would be. Through the NHS, I did one egg collection, one fresh transfer (FET), and two frozen transfers. The first FET resulted in a positive pregnancy test, but we learned at our first scan that it was ectopic. I had to travel to their sister hospital for surgery to remove the foetus and my right fallopian tube. This loss was heartbreaking and, as I was grieving, I tried to stay strong in the hope that I could get pregnant again and carry a baby to full term. I did a total of five transfers and a hysterosalpingography (HSG) with the hospital - the last two were as a private patient. With my history of endometriosis, I felt that I needed a more personalised approach. Moreover, as my 30s were going by, I was aware that my body was becoming weaker, and I was admitted to hospital a few times with respiratory issues.

In December 2019, I had surgery (right VATS bullectomy, pleurectomy, abrasion and mesh repair of the diaphragm) and a confirmation of thoracic endometriosis. This helped me to understand that endometriosis is a whole-body disease and, for many of us, we have to continually look at different treatment options because there is no cure. During the pandemic, I decided to raise awareness of endometriosis and infertility through social media and working with charities, brands, and the media. It has been empowering to connect with so many others and be part of a community.

At the beginning of 2021, we made the decision to move to a new fertility clinic and use Access Fertility for multi-cycle treatment. My ovarian reserve had dropped to a third of what it was in 2017, and we came up a plan. That year, I went through more fertility treatment that I ever have – two egg collections, one Endometrial Receptivity Analysis (ERA), and two transfers. On the first egg collection with this clinic, I got Ovarian Hyperstimulation Syndrome (OHSS) for the second time and ended up in hospital. We got two embryos that were frozen and transfers were done after the results of the ERA. The consultant changed the protocol for the next egg collection and we did intracytoplasmic sperm injection ICSI, which resulted in six embryos that were frozen. I knew at this point that I was finished with treatment as my health was deteriorating and I did not feel the results of my transfers would change due to the severity of my endometriosis.

Surrogacy had been on my mind as a potential option for a couple of years, but I did not look into it seriously until nearer the time I had completed treatment for myself. Through the online community, I had connected with someone who also had endometriosis. She had been following my journey and, out of the blue, offered to be a surrogate! I felt so many emotions and was in disbelief. After my final transfer, which was number seven, we talked more seriously about it and in 2022 started the process. Our clinic was very familiar with surrogacy and supported us along the way. This included counselling, legal advice, a surrogacy agreement, and various tests for my husband and I as well as our surrogate. We did an independent journey and gestational surrogacy, meaning that the embryos were genetically related to both my husband and me. Our surrogate did two transfers back-to-back in the summer of 2022 and I will never forget the phone call from her letting us know that it worked!

When you have been through pregnancy loss, I think it is quite common to feel guarded. We did have a scare early on with some bleeding but fortunately everything was okay. Our surrogate was a warrior, putting her body through so much to bring a baby into the world and help another couple become parents. For me, stopping IVF meant that I could focus on my endometriosis. I had another surgery for my thoracic endometriosis in December 2022. On Christmas Day, our surrogate sent us a video with the news that we were having a boy! This was the best gift ever and I can still remember how happy and excited I felt on that day. It all started to feel more real at that point. Our son was born on 1 May 2023 and our lives changed for the better. Since becoming a parent, I manage my endometriosis through Zoladex and now a pill, Desogestrel with minimal symptoms.

My advice to anyone who has suspected endometriosis and infertility is that it is more common than we realise. If you feel dismissed by a medical professional, consider getting a second opinion. Do not give up on your diagnosis and access to treatment. It can help to document symptoms which could be in relation to periods, moods, and diet. It took me five years to have my first diagnosis of endometriosis. Adenomyosis, where the lining of the uterus grows into the muscle of the uterine wall, followed this and then it was another seven years to be diagnosed with thoracic endometriosis. Although I have suffered physically and mentally during my twenties and thirties and felt trapped in a body that experienced never-ending pain, there is hope. Realising I am not alone in this has been one of the greatest comforts. And pushing through with IVF to create embryos was costly in many ways but now I am a mother, thanks to fertility treatment and a very incredible surrogate, and for that, I will always be grateful.