Patience LufungulaEvie Solomon said she felt "lonely" when she was searching for a diagnosisA trainee paediatric nurse has started a peer-led support group for women who are waiting for a diagnosis or living with gynaecological health conditions.
Evie Soloman, from Swadlincote in Derbyshire, was diagnosed with endometriosis when she was 18 and said she was inspired to start the group after having "such a lonely start to adulthood".
The non-for-profit group, H.E.R Circle, supports women living with endometriosis, polycystic ovary syndrome (PCOS), adenomyosis - a condition of the womb - fibroids and other related conditions.
The 23-year-old said there was "still a huge stigma" and conditions like these were not spoken about enough.
Evie SolomonEvie was 16 years old when she was admitted to hospital multiple times before her diagnosis when she was 18Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
It can affect women of any age and can cause pain and fertility problems, according to the NHS website.
Evie suffered with symptoms since her early teens and described her journey to a diagnosis as "frustrating" and "disheartening", and she said she had to "go private" to get a diagnosis in 2021.
After starting H.E.R Circle, she said: "I underestimated the amount of responses and it's been a very wide age range," she said.
Evie does not want other women to experience the same loneliness she did and said "without systems being created like this and networks, it's never going to change".
Evie SolomonEvie said she takes a variety of prescription medication, supplements and vitamins to try and manage her conditionShe said she "lost trust" in the system "that's meant to help you".
Joined Up Care Derbyshire said it had "listened to women's voices over women's health issues", recently launching The Inclusivity Checklist, Action Plan and Resource Pack to support GPs in the way they treat and support their women patients.
This aims to support "reflection, service review, planning and quality improvement" across areas such as access to care, communication with patients, community engagement, early intervention and cultural sensitivities.
Evie SolomonA prescription for pain relief Evie received after one visit to A&EEvie said she was "in a much better position than [she] was five years ago", but her condition is something which is "forever ongoing".
"It spread to my bladder and bowels, causing separate issues and another diagnosis of 'painful bladder syndrome'," she added. "My medication is often changed and doses increased. It is still so much trial and error."
Evie wants groups like hers to push for bigger change and, as a trainee paediatric nurse, wants training for conditions like endometriosis to be added to the curriculum for medical and nursing students.
Women's health hubs
In a statement to the BBC, Samantha Niblett, MP for South Derbyshire, said it was an "honour" to meet Evie when she attended a recent surgery and she has offered her "full support".
She said: "It shouldn't be such a struggle, and it's why I am looking forward to hearing the plans to be announced this year with government's update to the Women's Health Strategy.
"Having sat on the women and equalities committee when we completed the report on medical misogyny, I am hoping to see recommendations made in that report taken on board by government," she continued.
A Department of Health and Social Care spokesperson previously said it was renewing the Women's Health Strategy, training new doctors on endometriosis and cutting waiting times for gynaecology treatment.
"We are also opening women's health hubs providing care for menstrual problems and endometriosis, and prioritising the condition through NHS online so women can get quicker access to NHS care."
Listen to BBC Radio Derby on Sounds and follow BBC Derby on Facebook, on X, or on Instagram. Send your story ideas to [email protected] or via WhatsApp on 0808 100 2210.
More on this story
