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07
Sept
The Harrogate woman starting conversations around endometriosis and fertility
It wasn’t until Kim Olsson was in her twenties that she first discovered something was wrong.
Following a holiday to Lanzarote, she experienced stomach cramps severe enough to make a GP appointment – little did she know, but this would be the start of a lengthy fertility journey.
Now, she’s using her own experience of living with endometriosis to help others in the Harrogate district, by establishing a support group, to raise awareness about the condition.
One in 10 women
Endometriosis is a long-term condition in which cells similar to those in the lining of the womb grow in other parts of the body.
Each month, those cells react to the menstrual cycle in the same way as those in the womb do, building up, breaking down and bleeding – but unlike a period, they they cannot leave the body.
This can cause inflammation and the formation of scar tissue, presenting itself in a variety of symptoms which can include painful, heavy periods, pain during or after sex, extreme tiredness, and low moods or anxiety.
There is still no known cure for endometriosis - yet it affects one in 10 women and those assigned female at birth.
At Kim’s first doctor’s appointment, she was misdiagnosed with Irritable Bowel Syndrome (IBS) and sent on her way. However, when the symptoms worsened the next month, she made another appointment, this time to see a different GP.
Kim explained:
This doctor performed a more thorough examination, after listening to my experiences.
She actually was the first person to suggest that I might have had endometriosis – but her advice was ‘if you just get pregnant, that will cure it.’
She didn’t ask if I was in a position to have a child, my personal situation or preferences – without any caveats around it, the advice was to have a baby.
The irony is not lost on Kim now that such a sweeping statement does not take into consideration that between 30 – 50 per cent of people diagnosed with endometriosis can experience infertility.
This advice would be unfortunately indicative of Kim’s wider experience, post-unofficial diagnosis. With so little information available, she was mainly left to manage symptoms on her own, using painkillers and birth control pills, commonly suggested treatment methods.
Surgery and social media
In her early 30s, and after many years of debilitating symptoms, Kim had her first surgery at Harrogate District Hospital, to remove the visible endometriosis.
However, this type of procedure – called ablation – only removes superficial evidence of the disease, so within 18 months, Kim was experiencing the same level of ‘excruciating’ pain.
She said:
When it was back, it was really, really back. But in that time, I’d done a lot more research, educated myself so I could advocate for myself.
I discovered that centres with British Society for Gynaecological Endoscopy (BSGE) accreditation were the places that really could offer the gold standard of treatment – and thankfully there was one in Wakefield, Pinderfields Hospital.
I was lucky that my GP in Harrogate did agree to refer to me to Pinderfields. I had to wait almost a year to be seen, but they really do know what they’re looking for.
Endometriosis is a long-term condition in which cells similar to those in the lining of the womb grow in other parts of the body (Image: Pexels)
During Kim’s second surgery, it was discovered she had Stage IV endometriosis, a grading that carries the most risk to fertility.
Thankfully, the procedure was a success in terms of removing as much of the disease as possible, to give longer-lasting results.
A few years post-surgery, Kim and her partner decided to start a family, and it was then the initial fears that her endometriosis could have impacted her fertility were realised.
After a lengthy process trying to secure NHS funding for IVF, which was ultimately rejected, the couple decided to begin private treatment instead.
Kim described this period as a ‘lonely and confusing time’, which is when she turned to social media for advice and support - and found a brand-new community of like-minded people.
A friend recommended Instagram to me, as a place to find people who were talking openly about topics like endometriosis, IVF, pregnancy loss – but I didn’t expect to find friends too.
There’s such an amazing and supportive online community out there – and everyone should be able to access that.
After a complicated and often fraught fertility journey, Kim and her partner were delighted to welcome their child into the family in February this year.
'I want to use my experience to help others'
Kim ran her Instagram page Positility – an amalgamation between positivity and fertility, and a reflection of her own vow to remain upbeat throughout her own journey – for a year, before redundancy was the catalyst she needed to establish a Community Interest Company under the same name.
Although still in its infancy, Kim wants Positility to become a comprehensive compendium for fertility resources, offering professional services that includes workplace training, keynote speaking, and toolkit creation.
Inspired by the support she found from the online community, and looking to replicate it on a local level, Kim is hosting her first ‘endometriosis evening’ in Harrogate.
Taking place on September 25 at the Friend’s Meeting House, Queen’s Parade between 7.30pm-9pm, the event will be an opportunity to learn more about the condition, and share their own experiences, should they wish to.
(L) Kim pre-surgery (R) In her 'Endo-warrior' top
There will also be a chance for participants to borrow from the ‘endometriosis library’ of literature and research, and to form a support network.
Kim hopes that after the first evening, she’ll be able to establish the event as a regular meet-up, providing the service to the people of Harrogate, and beyond.
She added:
I want to use my experience to help others, and to let people know there are resources out there, right on their doorstep as well as virtually.
While digital resources are great, meeting in person to share advice and stories can't be undervalued.
It's good to get people talking, find out what they want out of the event. It's a case of tailoring it to what's needed, and how best to help people, whatever stage of the journey they're at.
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