Endometriosis Action Month: “After 11 years, my diagnosis came as a massive relief and validation to learn it had not been in my head”
In this blog, Bethan, a member of our Patient Engagement Forum shares her journey from unexplained infertility to an endometriosis diagnosis.
Trigger warning: This blog discusses baby loss.
I have always known that the pain I experience throughout my cycle is unusual. At 18, I first went to the GP and they sent me for an ultrasound of my ovaries. Nothing abnormal was found and I was told my pain was normal. At 25, I came off the combined contraceptive pill and, over the years, my periods became heavier, more painful, and I started to experience ovulation pain too. Again, I had a scan via the GP and again I was told the pain was normal. With regular cycles they were not concerned about my reproductive health.
In 2021, I married my best friend and long-term partner and, within a year, we decided to start trying for a family. I was 28 at the time and, given my regular cycles and good health, I was panicked at the six-month mark when nothing had happened despite meticulously tracking ovulation each month. At this point we underwent tests at the GP and a private IVF clinic.
We were told all tests were clear, although they couldn’t get a clear picture on my right ovary, they believed the test had shown an open tube on my right side. I asked at the time if endometriosis could be present given my history of pain and I was told no. Trusting their advice, we were happy that our results looked great but were left confused as to what the problem could be.
Two years, a nutritionist, and a gynaecology referral later, we were referred for NHS-funded IVF under the label of ‘unexplained infertility’. If you have ever been given this label you will understand how incredibly frustrating and upsetting it is. To be an otherwise fit and healthy 30-year-old and be told they cannot find a reason why you cannot conceive is a hard pill to swallow.
Fast forward to August 2024 and we began our IVF treatment, which started with egg collection. My right ovary was still missing in action, which didn’t seem right, and on egg collection day they only managed to collect eggs from my left ovary. We were incredibly fortunate and managed to retrieve 20 eggs, making nine embryos. However, upon waking from the procedure I was told I would need my right fallopian tube removed due to a hydrosalpinx, a condition where one or both fallopian tubes are blocked and filled with fluid, making it inhospitable to an embryo. I was told to ask my GP for a referral but that it could be 12-18 months before this surgery could take place. I was devastated; how did I go from being five days away from an embryo transfer to potentially years?
In the days that followed, I unfortunately developed OHSS (Ovarian Hyper Stimulation Syndrome), which required a trip to hospital. However, in a strange turn of events, an extremely kind gynae doctor listened to my story and booked me in for a laparoscopy to remove my tube two weeks later as they had a cancellation. I couldn’t believe my luck within an unlucky situation!
What is OHSS?
Ovarian hyperstimulation syndrome (OHSS) is a reaction to fertility drugs taken to increase egg production.
Around a third of women will have mild OHSS, which can normally be effectively treated at home with pain relief. Moderate or severe cases are less common, but it’s important to report any symptoms to your clinic immediately.
They successfully removed my right fallopian tube during the surgery and learned that it was covered in endometriosis, and that I had widespread endometriosis that had also glued my right ovary behind my uterus.
This diagnosis was not a surprise. After 11 years, it came as a massive relief and validation to learn it had not been in my head. We finally had our answer for why trying to start a family had been challenging and, now I knew what I was dealing with, I was determined to do everything I could to optimise my chances. For me, this meant learning about diet and lifestyle with endometriosis and how I could lower my inflammation through avoiding certain food triggers. This process is different for everyone but involved keeping a food diary and noting what I had eaten compared to my endometriosis symptoms, which helped me understand what to avoid.
Two months later, while I was waiting to begin an IVF embryo transfer round in January, I fell pregnant spontaneously in November 2024 for the first time in my life. This was, and always will be, one of the happiest times of my life. Unfortunately, our little one was found to be incompatible with life and, at 12 weeks of gestation, I had an ERPC (Evacuation of Retained Products of Conception) procedure under general anaesthetic. This was an incredibly difficult time for myself and my husband and we had counselling from the baby loss charity Petals.
Three months later, I went through a natural modified frozen embryo transfer (FET) cycle, which failed to implant. We were now on our last NHS-funded embryo transfer and, as I quite often joked at the time, ‘my hope bucket had plenty of holes in it’. In October 2025 I had my final embryo transfer, this time opting for down regulation to suppress my endometriosis, followed by a medicated embryo transfer. Down regulation is used to suppress natural hormones, and medication is then used to prepare the lining of the uterus.
The two-week wait after an embryo transfer is a special kind of torture that I wouldn’t wish on anyone. On test day, I took my test and ran downstairs before I could look at the result. I was so certain this hadn’t worked that I wouldn’t even look at it, and my husband had to force it in front of my face. It was positive.
My initial reaction was fear, I cried and the only words I could manage were ‘I’m scared’. It was worlds away from the lovely social media posts of people finding out they are pregnant and I felt guilty that my overriding feeling was fear. After everything we’d been through, fear took the wheel in the early weeks of my pregnancy my midwife booked me in for Cognitive Behavioural Therapy (CBT) to overcome my anxiety, which worked wonders for me. I am now 23-weeks pregnant with a healthy baby boy, and I pinch myself every day.
I will forever be grateful for IVF. However, if my concerns had been listened to and my endometriosis symptoms recognised when I was a teenager, there is a strong chance we would not have needed treatment. My endometriosis journey is also far from over, and it’s likely I will need another surgery in years to come. I’m hopeful for future generations that earlier diagnosis and treatment will avoid the challenges that I have had to overcome but, until then, I will stay extremely grateful for the magic of IVF.
About the author:
Bethan and her husband are currently pregnant after three years of infertility, IVF treatment and baby loss.
