The ‘Me’ in Endometriosis
By Charlotte Crouch
March is Endometriosis Awareness Month, and so I’m sharing my story below in the hope to not only encourage more research and awareness, but to make fellow sufferers feel less alone.
It took over 10 years for me to be diagnosed and eventually properly treated for endometriosis and adenomyosis. Despite being the second most common gynaecological condition in the UK and affecting 10% of women, it still takes an average of 7.5 years to get diagnosed with endometriosis. Women (and those assigned female at birth) in the United States will suffer from endometriosis for 10 years before receiving a proper diagnosis.
What is endometriosis?
Specialists define endometriosis as “a debilitating disease, characterized by extra-uterine endometrium-like tissue and chronic inflammation. Whilst symptoms can vary, high, clinical hallmarks of endometriosis are infertility and severe pain symptoms (e.g. dysmenorrhea, dyschezia, dysuria, dyspareunia, and chronic pelvic pain), resulting in a lower quality of life and reduced emotional well-being”.
Where it began
I was 13 when I started needing time off school to cope with period pain and regularly bled through my clothes despite changing sanitary products every 1-2 hours. My GP told me it was “normal” to have painful periods, and I was put on the contraceptive pill and left to get on with things. Years later, despite being put on the implant alongside the pill to prevent periods entirely, my pelvic pain increased, and I started collecting other symptoms. I was told I had irritable bowel syndrome. It wasn’t until age 25 that I was referred to specialist women’s health centres for scans.
“Have you heard of endometriosis?”
I was bleeding heavily for five days at a time, every eight days. I experienced intense back ache, pelvic pain, nausea, severe fatigue, and many other symptoms that made it hard to live my normal life. I’d gone from being someone who walked for 90 minutes a day, lifted weights three times a week, and regularly did yoga, to someone who struggled to walk for more than 15 minutes at a time.
During my first internal scan, the woman examining me asked if I’d ever heard of endometriosis. But like many people (33% of women and 74% of men), I didn’t know what it was. I was referred for further investigations, and by the time the next lot of scans came around eight months later, my endometriosis was clear to see, despite ultrasounds not always showing endometriosis, and the specialist told me I also had adenomyosis, and that I would be going for an MRI in the coming months.
Getting there
Months later when I went for my MRI, the pain was completely debilitating. I was crying most days. I constantly had burn marks where I’d scalded myself with a hot water bottle to try and relieve the pain. I’d spent nights in A & E on Morphine to get through the worst of it. I was on two types of regular medication alongside hormones, to try and manage the pain. I couldn’t go anywhere without maximum strength Tramadol and menstrual pain strips in my bag.
When the MRI confirmed the diagnosis, I felt relief. After all these years, I felt validated and believed. This wasn’t “normal”, and I wasn’t just being dramatic.
I was put on the list for laparoscopy surgery, and while I waited for an operation date my symptoms were (attempted to be) managed with painful monthly Goserelin insertions (a GnRH analog that induces medical menopause by downregulating pituitary GnRH receptors).
A new person entirely
Right before my operation, I was grey and weak with back pain. I could barely sit up to move from one bed to the next. But when I woke up, I was incredibly relieved to hear the surgeons had managed to cut out all of my deep and superficial endometriosis.
In just a matter of weeks I felt like a brand-new person. My pain had gone. There is no exaggeration at all when I say that it was (and still is) life changing.
Now, just over three months since my operation, I’m back to my usual exercise routines, and I feel so much brighter in myself. I’m no longer worried about leaving the house in case pain comes on, or having to cancel plans because I’m too ill. I just wish this had happened years ago before things got as bad as they did.
I’m fully prepared to have surgery again (21.5% of endometriosis sufferers have the disease re-occur within two years following surgery), but until then I’m doing everything I can to slow the development down with hormonal treatments and pelvic floor exercises for pain prevention.
What needs to happen and what can you do?
It takes way too long for endometriosis to be diagnosed. Earlier diagnosis reduces the risk of fertility issues and organ damage, as well as reducing the need for surgery. It is vital that earlier diagnoses are made.
Surgery is not a cure, and a cure for endometriosis still doesn’t exist. Treatments are only available to try to manage pain and fertility issues. Care for the disease needs to be improved.
There is still a culture of silence and taboo around women’s health issues. Further awareness needs to be raised about endometriosis and other gynaecological conditions, so women feel empowered and confident to discuss issues with their doctor.
How you can help
If you’re a researcher, consider submitting your work to an open-access journal like Women’s Health.
If you’re especially experienced in the field of endometriosis, submit a proposal to run your own Special Collection to encourage more research that drives diagnosis and treatment advances, and works towards a cure.
Whether you’re a researcher or not, educate yourself about the condition and spread the word by reading the latest research and sharing what you learn.
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