A STUDENT is on a mission to raise awareness of endometriosis after starting the menopause aged just 22.
Katy Johnston, who is from Aberdeen but now living in Glasgow, was diagnosed with the gynaecological condition in January after years of periods so painful she was vomiting several times a day, forcing her to miss days of school and university.
There is no cure for the condition, which occurs when the tissue that lines the womb is found outside of the womb – causing heavy periods, tummy pains and making it difficult to get pregnant.
Katy’s doctor described her condition as one of the worst they’d ever seen for a woman her age – and started her on menopause injections in a bid to relieve the pain and prepare her for an operation next year.
Now the Scottish Sun social media journalist is speaking out about her experiences in a bid to help others through her Instagram account Endo Silence Scotland.
Katy told The Scottish Sun: “I was diagnosed with endometriosis at the start of this year – following a decade of uncertainly and painful periods.
“I’ve always put my excruciating cramps down to a natural consequence of being a woman – just something every girl goes through.
“It took me years to figure out it was way more than that.
“From the age of 16 my pain each month became unbearable and forced me to miss time out of education all the way through school and university.
“During my final year of uni things became worse – I’d pass out, have to stay home for days in agonising pain, vomit six or seven times a day with every menstrual cycle.
“I lost two-and-a-half stone. I was miserable. ”
Katy, who was studying Multimedia Journalism in Glasgow, was forced to leave her university course.
She became housebound as the pain was so excruciating she struggled to walk without help.
For years doctors refused to listen – even prescribing over-the-counter painkiller Ibuprofen at one point.
She added: “I had to pack in my postgrad study all together as I was confined to the house – unable to walk without a stoop or assistance.
“I felt completely helpless and had been consistently refused help by doctors.
“Eventually I demanded to be heard and got a gynae appointment at Glasgow Royal Infirmary.
“Following a series of scans and MRI’s it was revealed that I had four large chocolate cysts (endometriomas) and fluid fusing my bowel to my uterus in a sticky clot – which explained a lot of my IBS like symptoms.
“I was referred for surgery that took place in April.
“Following the procedure my doc confirmed stage 4 endometriosis, adhesions, a Fallopian tube expanded to the same size as my womb and what the doctor deemed to be one of the worst cases he’d ever seen in a woman of my age.”
Despite the news Katy felt like she was finally moving forward.
However, at just 22 she was told by doctors they would induce the menopause – her endometriosis was so bad that they needed to pause her periods so they could operate on her next year and remove some of the endometriomas.
Endometriosis can make it hard for sufferers to conceive, and in rare cases can cause infertility.
She explained: “I was shocked and also vindicated. I wasn’t crazy or a hypochondriac.
“All the pain I’d been in for years now made sense.
“The doctor put me on the coil and started me up on three month menopause injections.
“These injections are GNrH agonists designed to put my ovaries on pause – to allow my body to recover and my reproductive bits a chance to calm down.
“I really want a family one day and the chance to conceive naturally.
“Hopefully that could still be on the cards if I allow my body the break it needs from endo.”
And along with the menopause are other symptoms – including extreme anxiety, dizziness and hot flushes.
Brave Katy added: “For now, I’m grateful.
“The menopause has given me extreme anxiety, terrible dizziness, hot flushes the lot – but the alternative is so much worse.”
Katy has now started an Instagram account, Endo Silence Scotland, which is a platform for other women to share their endometriosis stories.
And a video of Katy discussing endometriosis for BBC’s The Social has gone viral with over 318,000 views so far – and hundreds of women getting in touch.
Katy said: “I’m struck by the fact that this is the choice the 1 in 10 women in Scotland with endo are faced with.
“I’m gobsmacked by how little this is spoken about and how little we know about this ‘incurable’ condition.
“Celebrity sufferers – Lena Dunham, Halsey and the like are speaking out but more women need to follow suit.
“The condition can be incredibly isolating and it’s easy to feel alone but we just aren’t.
Original post found here