BBCRachel Moore said she wants to share her "traumatic ordeal" to raise awarenessA woman says she was "fobbed off by the NHS" and "adenomyosis ruined my life".
Rachel Moore, 37, from Portsmouth in Hampshire has spent years in debilitating chronic pain due to a womb disease.
Adenomyosis, is a condition often compared to endometriosis and occurs when where endometrial-like tissue grows into the muscular wall of the uterus, causing it to thicken and enlarge.
Common symptoms include heavy, prolonged menstrual bleeding, chronic pelvic pain, and infertility.
The mum of two, who was diagnosed last year said she felt she was dismissed by her GP and let down by the NHS.
Rachel said: "I had a lot of pain with periods, I was back and forth to the doctor. I was put on lots of different contraception, that didn't really do anything to help.
"I was well for four days out of every month, it ruined my life."
'I wanted to be heard'
After repeatedly visiting her GP Rachel said she felt she was going around in circles, to the point she was convinced she was imagining her own pain.
"I just felt like I wasn't being listened to. I was being fobbed off. I wanted to be heard and I didn't feel like I was getting that at all. I'm angry about it," she said.
Rachel was eventually referred to a gynecologist but was told there was a wait of nearly a year.
She said she felt she had no option but to undergo a hysterectomy privately.
Rachel's GP practice has apologized for the difficulties she experienced and said her feedback will be investigated thoroughly.
An NHS spokesperson said: "Too often we hear of women whose health concerns have been dismissed, and we are actively addressing this through education, training and improving services for women.
"NHS staff should support women experiencing symptoms of adenomyosis and we strongly encourage any woman concerned to speak to their GP."
Health campaigner Tanya Simon-Hall who runs support group Adeno Gang said it is an "uphill battle" for womenWomen's health campaigner Tanya Simon-Hall runs the support group The Adeno Gang.
She explained that women with adenomyosis face an uphill struggle for diagnosis and treatment due to a lack of specific NICE guidelines.
At present, there are wider guidelines primarily covering fibroids, endometriosis and heavy menstrual bleeding.
She said: "Stories like Rachel's are all too common sadly.
"Due to the lack of NICE guidelines a woman in Berkshire can get different advice and treatment from her doctor than a woman in Hampshire.
"It's not acceptable and we want to see this change."
Rachel said she's speaking out about her "traumatic ordeal" to encourage other women to insist they're listened to by their GP.
"It's been a traumatic and painful journey. I just think that all women should be able to be heard and be listened to."
Getty ImagesWes Streeting said the Government is updating the women's health strategy introduced by the Conservatives in 2022In an interview with BBC Radio 4's Women's Hour, the Health Secretary Wes Streeting acknowledged that some women have been made to feel like "second class citizens" with their pain treated "as an inconvenience and their symptoms as an overreaction".
As a result, he stressed that he wanted overall NHS waiting list numbers to fall more quickly for women, while also seeing an improvement in access to women's health services.
Streeting said among the new measures announced by the government is a new "patient power payment" scheme.
NICE said in a statement: "We include recommendations for the diagnosis and management of adenomyosis in our guideline for heavy menstrual bleeding.
"New healthcare guideline topics are referred to us from NHSE and are considered through the NICE prioritisation process".
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