Louise Richardson-Self’s life is a daily roller coaster of pelvic pain, varying in severity from dull to extreme.
“Sometimes I experience burning and searing pain, sometimes I experience a deep aching, sometimes I have muscle spasms and a kind of bruising sensation,” she said.
Daily stretching, medication and an anti-inflammatory diet are crucial to helping manage the symptoms of her endometriosis and adenomyosis.
They are conditions where tissue similar to the lining of the uterus grows either into the muscular wall of the uterus or outside of it.
Dr Richardson-Self was only diagnosed after years of pleading for help and having her symptoms minimised by doctors.
“It blows my mind that it took to the age of 33 to get a diagnosis of endometriosis when it runs in my family,” she said.
“I had to plead with people, to get them to take me seriously and bother to look.
“I was told, ‘You’ve just been in pain for so long that your brain just thinks you’re in pain, but there’s really nothing wrong with you.'”
Persistent pelvic pain affects one in five women but is notoriously under-diagnosed and under-treated, with many women feeling dismissed or invalidated by medical professionals.
Emily Ware, a women’s health GP, said she started out not knowing a lot about the area, despite significant medical training.
“I have a GP qualification, I also have an advanced qualification of obstetrics and gynaecology, so I’ve done a lot of training in my life, but never in that training have I learned how to manage complex persistent pelvic pain,” she said.
Dr Ware is an educator on a new online course from Vagenius Training, which aims to help GPs better understand the chronic condition and address knowledge gaps.
Dr Ware said persistent pelvic pain was complex and involved a lot of different organs.
“When pain is affecting someone’s function on a day-to-day basis, where they can’t go to work, they can’t school, they can’t parent their family as well as they can, that’s not normal,” she said.
The training course encourages GPs to use a holistic approach through a multi-disciplinary team, including support from gynaecologists, pelvic health physiotherapists and dieticians.
“These patients need a team, but the GP is the perfect person to direct that team and direct that care, follow the patient up well,” Dr Ware said.
Rachel Andrew is a continence and women’s health physiotherapist and founder of Vagenius Training.
“We really noticed that there was [a] big need in GP practices to understand pelvic health better and the ramifications it has to women’s lives and quality of life, relationships, parenting, you know, it’s a huge, huge area of need,” she said.
The course aims to debunk myths and misunderstandings.
“People are still being told even today to have a baby to cure endometriosis,” she said.
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Ms Andrew said she had heard of people seeing more than 10 GPs before they got a diagnosis.
For some women, symptoms of pelvic pain fluctuate, meaning the timing of a GP or specialist appointment could coincide when symptoms were not present.
“So they’re very hard to pin down, and when you’re not really tuned into that area you might find it hard to pull them together,” she said.
“And then it’s often not a callous dismissal, but women feel not heard and not validated and then might have to seek help somewhere else, might go to emergency with pain that they’re having that’s acute.”
Ms Andrew said empowering GPs to develop an ongoing management plan involving specialists and other health professionals could go a long way to helping patients feel validated and that they were on a positive treatment path.
“GPs can do so much with resources and understanding and knowledge,” she said.
Dr Richardson-Self hoped the training would ultimately help other women and girls.
“I don’t want them to have to spend 25 years wondering why they’re in pain and why no one can help them,” she said.
“Now, hopefully, they won’t have to.”
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