Ashfield woman’s ‘fight’ for endometriosis pain to be taken seriously
The leader for the UK's main endometriosis charity says she is ‘fighting’ to be listened to by professionals over her symptoms and calls for more advertising of the condition
Jenni Johnson, 38, from Sutton, is the group support leader for the Nottinghamshire arm of Endometriosis UK and has struggled with the condition for around 20 years.
But it was only diagnosed during an IVF scan – a decade after her symptoms first appeared and following numerous doctors visits.
Endometriosis is a long-term condition affecting one-in-10 UK women, where tissue similar to that found in the lining of the womb grows in other parts of the body, such as on the ovaries, fallopian tubes and the lining of the pelvis.
In rare cases, it can be found outside the pelvis, such as in the chest and can affect the bladder and bowel.
People with the condition often deal with severe menstrual pain, heavy or irregular bleeding and pain in the stomach and lower back.
It can also lead to fertility issues.
A 2024 Endometriosis UK report found the average time it takes for the condition to be diagnosed after the first GP visit is just under nine years.
Jenni had a hysterectomy when she was 32 to help manage the pain and problems she endured from the condition but she now fears there is tissue on another organ as she is experiencing similar pain to what she previously suffered.
Prior to her diagnosis, she spent years in and out of health settings, only to be given birth control and painkillers to manage symptoms, but she is now ‘fighting all over again’ for professionals to listen to her current pain issues.
She also relies on crutches to walk and a wheelchair for longer distances which she believes may have been avoided if her condition was originally taken seriously.
She told the local democracy reporting service (LDRS): “I think it’s on another organ but it’s now being dismissed because I don’t have a uterus. It’s four years fighting again to get this looked at – you’re passed from pillar to post.
“Since having my hysterectomy I’ve been put on the wrong medication – hormone replacement therapy (HRT).
"My GP looked at my notes and asked why I was put on HRT, as ‘you’ve got too much oestrogen in you’.”
Nottingham and Nottinghamshire’s female population is around 638,000 and a total of 12,875 women – two per cent of the population – have or have had a diagnosis of endometriosis in primary care, according to the area’s Integrated Care Board (ICB), in which an ICB spokesperson said the number is ‘likely to be significantly higher’.
Jenni reached out to her local county councillor, Joseph Rich (Ref), earlier in 2025 to help raise awareness of the condition and wants more specialist treatment options to be made available in Nottingham.
She said: “Doctors need to get it out of their heads that it’s just period pain.
"If it is, why am I still having pain without a uterus?
Jenni says she has been barred from giving out leaflets at some GP practices, hospitals and pharmacies, with staff thinking the advertisements are ‘promoting’ people having sick days off work.
She said: “I think it’s the fact that people probably think it’s not as serious as it is.
"If you’re waiting in a GP surgery or pharmacy, you’re looking around at the leaflets on the wall – they advertise diabetes, so why isn’t endometriosis allowed to be on that board?
“If it wasn’t serious, sufferers wouldn’t need operations as much as we do.
"How much could that one leaflet help someone who thinks it could be endometriosis?
“You’re dismissed a lot by health professionals, you do your own research, it’s not fair we should have to do all that when they should be giving us this information and there are support groups out there – why haven’t they advertised about that?”
In a November council health meeting, Coun Rich questioned the ICB on the lack of endometriosis leaflets and posters in GP practices, which was echoed by Conservative councillor, Janette Barlow, who referenced the successful menopause campaign.
Dr Nicola Jay, deputy medical director at the ICB, responded to both councillors that displayed information in GP practices is ‘personal to their population’ and that she did not think endometriosis posters there were the ‘right approach’, with more focus needed on understanding and finding women in communities who are under-represented.
During this meeting, Coun Christopher Adegoke (Ref) called the current efforts around supporting the condition an ‘illusion of care'.
But Dr Jay responded that she disagreed, saying: “What I wasn’t going to do is say we’ll have a tick-box exercise.
"Poster won’t reach the people we need and what we need to stop doing is repeating mistakes we’ve made in the past.”
According to an ICB document from this meeting, if someone goes to the GP with endometriosis symptoms a GP will rule out ‘red-flag’ symptoms before suggesting treatment, such as pain medication or hormonal therapy.
If symptoms persist or worsen, the person is referred to a local general gynaecology service, where they will have scans, and it will be managed through medication or laparoscopic surgery.
If a case is severe, patients are referred to a British Society for Gynaecological Endoscopy-accredited centre, with the nearest location being Royal Derby Hospital.
If you wish to join Jenni’s support group, email [email protected]