Jen’s Endometriosis & Adenomyosis story
“ I never truly valued my choice to have children until it was taken away.”
‘My period started when I was 11 and although I didn’t know exactly what to expect, as menstrual health wasn’t something that was openly talked about, I definitely didn’t expect to be curled up on the floor in pain and unable to move.’
‘One of the unlucky ones’
It wasn’t long after beginning to menstruate that Jen’s mum, who had had a hysterectomy due to her endometriosis, took her to the doctors knowing something wasn’t right. Jen was told she was ‘one of the unlucky ones’ who experienced heavy periods and was recommended to take the contraceptive pill, as this would help balance out her symptoms.
For the next 22 years, throughout school, university, and then working in her own bakery, Jen continued to take the contraceptive pill and had come to accept her heavy and painful periods as the norm, shutting herself away for the week of her period and missing out on social events due to the pain, and anxiety of bleeding through clothing.
‘I had an injury which meant I had to go to the doctors a lot during my teenage years. At the end of every appointment, I’d always mention how bad my periods still were but was constantly told it was normal and that because I was on the pill there was nothing else they could recommend. I was told this was normal so often that I began to internalise it and so I never discussed what I experienced with friends or family, as I just assumed everyone else was going through the same thing and I must just be weak.’
Discontinuing the pill and discovering the true impact of her condition
Prompted by boredom during lockdown in 2021, Jen read the book ‘Period Power’ and realised, that since the age of 11, she had never experienced a natural cycle. Intrigued, Jen stopped taking her contraceptive pill. Within just three weeks, the pain that was previously confined to the week of her period was now her everyday reality.
‘I was bedbound, vomiting, using walking sticks to go to the bathroom and painkillers didn’t even touch the pain. Looking back, I don’t even recognise that woman now.’
Her relationships, work, and mental health suffered significantly. Her husband essentially became her carer overnight and when her mental health was at her lowest, she remembers saying to him she wouldn’t blame him if he left.
Advocating for a diagnosis and treatment
At this point, Jen and her husband realised she had to go back to the doctor and had to push to be heard. She wrote down her whole history, covering two sides of A4 paper, and scheduled a phone appointment with the doctor. ‘I didn’t even let the poor woman on the other side of the phone speak, I just read out my story. When I eventually stopped, she just replied OK let’s get you a scan and I was so happy I was finally being believed! Something was going to change!’
Her first ultrasound was unfortunately not the experience she’d hoped for; ‘The probe was just being rammed around while I was in agony. They couldn’t seem to find half my anatomy, which to me was a clear warning sign that something was wrong but they kept going. I was asked to go and empty my bladder and when I did and came back, it was showing as still full. I was chastised for this, as if I didn’t know how to use the bathroom at age 31, but surely this in itself should have been a clinical finding?’
After struggling to get hold of someone at her doctor's to provide the results, the results of the ultrasound came back as ‘abnormal’ but there was no sign of endometriosis and no further action was recommended. ‘I was devastated. I felt like I was back at square one.’ Unable to work due to the pandemic, but also her condition, her finances had been depleted. She was lucky that her parents were able to step in, and they insisted she sought private care. ‘I saw a private gynaecologist who sent me for an MRI. This came back showing I had endometriosis and adenomyosis. I was booked in for surgery in May 2022 and I was so hopeful – finally someone will help me.’
There was some disease found during the surgery which was removed, but Jen was told the extent wasn’t as bad as previously feared. The recovery was a long and difficult process, but Jen knew that some of the pain she was experiencing was exactly as it was before – not pain as a result of the surgery. Going back to the surgeon, she was told that he was the surgeon who had been trained at medical school – not her, and that nothing could have been missed. He suggested it must be psychosomatic and she should consider therapy and aggressive painkillers. ‘I was distraught. I thought this surgeon was my proverbial knight in shining armour and instead, I was belittled. My husband, who had always been supportive did ask me to consider if what he was saying might be true. However, after seeing how upset I was and remaining adamant that something wasn’t right, he reassured me that we’d get a second opinion and so we did.’
Seeking a second opinion
By this point in her journey, Jen had begun publicly advocating online for better endometriosis and adenomyosis awareness and had met others along the way. She had learned from them that you can request an endometriosis specialist, and so went down this route. ‘I basically interviewed this specialist. I wanted to make sure I was confident in him due to my past experiences with some medical professionals.’ Jen had another scan with this specialist and the results came back: endometriosis everywhere. There was a long plaque along her ureter that could have progressed into kidney failure that couldn’t have grown in the time since her surgery, and so it had to have been missed. ‘When my husband saw my results, he couldn’t believe it and told me never to second guess myself again – I know my own body.’
Radical surgery
A year later in May 2023, Jen underwent radical surgery, excising all her endometriosis and having a hysterectomy to treat the adenomysosis and also fibroids which had also been found.
Jen and her husband had always sat in the middle of the two poles of those who longed to be parents and those who were childless by choice. ‘Having a hysterectomy before having children was a huge decision. My organs were so diseased and so I know it was the right thing to do, but I never anticipated how it would affect me emotionally. I never truly valued my choice to have children until it was taken away.’
The year after her hysterectomy was hard for both Jen and her husband, not just physically but also emotionally, as the first Mother’s Day and Father’s Day passed and she met her newborn niece. It was like seeing what her life could have been if she hadn’t had a hysterectomy. She also hated that her husband’s choice to become a father had been taken away.
‘I don’t regret the choice to have a hysterectomy as the freedom it has given me is like a whole new life. It does get easier and I have amazing nieces and nephews.’
Endometriosis and medical gaslighting campaigning
Over a year on from her surgery, Jen’s endometriosis has unfortunately come back but the symptoms are not as severe as they once were. She decided not to reopen her bakery which had been closed during lockdown. She tried to go back once Covid restrictions lifted, but the toll it took on her body was unbearable. Jen made the difficult decision to sell the bakery after nine years of building up the business. She now dedicates her time to endometriosis and adenomyosis education and campaigning. ‘The community I’ve built means the world to me. I want to do more, in terms of education of menstrual health and medical gaslighting - I refuse to be part of a society who ignores these problems.’
She now works with healthcare professionals, researchers, politicians, and medical schools to try to make them understand issues in endometriosis and adenomyosis care. She is currently working with The University of Cambridge’s Medical School to have this taught on the curriculum as a pilot, before hopefully rolling this out to medical schools across the country.
She also leads a second project ‘They said what?’ dedicated to raising awareness of and tackling medical gaslighting and medical misogyny. Through this project, Jen collects experiences and amplifies this message to healthcare professionals and politicians.
‘I want to make the evidence of medical gaslighting and misogyny impossible to ignore. I truly believe no one goes into medicine to try to make people’s lives difficult.’