I’m 26 years-old, and I want to remove my womb. A total hysterectomy is a major operation which involves the surgical removal of the womb and cervix – in some cases the fallopian tubes, ovaries, lymph glands and part of the vagina can be removed – but it’s the only way I can imagine my life without excruciating pain.
I was diagnosed with endometriosis at the age of 21, a long ten years after my symptoms first started. Endometriosis is a chronic condition which causes cells similar to those in the lining of the womb to grow in other parts of the body. My periods were awful with a mix of symptoms, from excruciating pain to heavy bleeding resulting in anaemia. For a decade I was dismissed, misdiagnosed and heard multiple hurtful comments from doctors – who told me my symptoms “were all in my head,” that “everyone gets bad periods” and that “I just wanted time off from school”. Doctors were often more concerned about my mental health, and I was referred for psychological investigations rather than investigations as to why I was so unwell – and what was causing my excruciating periods. I was put on all of the contraceptive pills available, strong painkillers and antidepressants – all of which didn’t help.
At the age of 21, I collapsed with sepsis. The life-threatening infection was the result of an infected endometrioma (a type of cyst that indicates severe endometriosis) that had gone untreated for years – which was finally found after I was sent for an MRI scan and a subsequent biopsy. It was me that pushed for the MRI scan, since the doctors kept dismissing that it could be endometriosis. But I was so unwell, and I needed answers.
Over that week, I went from almost losing my life to receiving a life-changing diagnosis of endometriosis. My life turned upside down. I knew all along there was something wrong, and I finally had a diagnosis. From there, I was referred to a specialist centre for endometriosis patients – but unfortunately due to long waiting lists on the NHS, my family decided to self-fund private surgery to cut out the disease from my bladder, bowel and pelvic nerves – as well as a 25cm endometrioma.
By the time I was 23, I received an additional diagnosis of adenomyosis (a condition where the lining of the womb starts growing into the muscle in the wall of the womb – it can cause excruciating period pain and heavy bleeding). Because of this, I was given a monthly injection to chemically induce menopause, which stopped my periods to alleviate the symptoms. This has severely impacted my life, as navigating the menopause in my twenties came with a multitude of symptoms such as hot flushes, insomnia and bone density issues – which has been confirmed via a bone density scan.
Both of these conditions have put my life on hold, having serious implications on my day-to-day life – with chronic daily pain going beyond periods. At age 26, endometriosis and adenomyosis have left me housebound with no quality of life due to the debilitating pain and other life-altering symptoms.
So, I want to have my womb removed. A hysterectomy is a cure for adenomyosis but not specifically for endometriosis, since it exists outside of the womb – but it can ease it. I want to take these steps to alleviate my symptoms. It would allow me not to feel like a prisoner in my own body.
We urgently need better education on the impact PCOS has on our bodies and minds.
Despite my own wishes to have a hysterectomy, I have been denied this option – because I’m too young and I do not have children. In fact, my future outlook on becoming a mum is uncertain, as these conditions have caused damage that limit my chances to conceive. But according to doctors, I may want to settle down to have a child with my future husband. I should stay in chemically-induced menopause despite it no longer helping; I should try more contraceptive pills or antidepressants; try some pilates, yoga or running – despite the fact I cannot currently walk without support.
I believe that women should have the right to make decisions over their own body. A potential future baby and fertility have been put before where I am right now in my life – despite NICE guidelines naming a hysterectomy as one of the available number of treatment options for my condition. Fertility has been put above my quality of life. It’s devastating that in 2024 a woman like myself can’t receive a treatment option when all other avenues have been explored.
I have thought about my future fertility a lot. I have made my peace with potentially not becoming a mother, as at this moment in time my health is more important – the effect of these conditions on my life are huge. It's a huge step to take, but right now I don’t see another way to alleviate my life-altering symptoms.
Due to the extremity of my conditions and to ensure the best outcome, I need an endometriosis specialist to perform my hysterectomy, alongside excision surgery to remove the further disease from my organs. A hysterectomy is something that I don’t take lightly, but I simply cannot go on with this pain. It shouldn’t have to be such a task to receive a timely diagnosis and specialist care with compassion and understanding that puts the patient first. My healthcare has come at a cost financially, and is now limiting my future – why are decisions being made by doctors based life choices that should be my own?
Endometriosis is a debilitating condition that affects 1 in 10 women and those assigned female at birth.
Whether I want to become a mother or not in future should be my decision for my own life. If there’s even a possibility that my symptoms will be alleviated, I want to take it. Endometriosis is a condition that currently takes on average eight years to diagnose in the UK, and has also been named as one of the most painful conditions by the NHS – alongside heart attacks and broken bones. My hope is that our pain will finally be taken seriously and treatment will be patient-based, with decisions being made to aid quality of life rather than so women can achieve the ‘label’ of becoming a mother.
Living with endometriosis can feel extremely isolating, and it’s crucial to know you’re not alone. Support is available via Endometriosis UK.
