Doctors shamed me for having ‘too much sex’ but my pelvic pain could be endometriosis
A BRIDE-TO-BE has been living with agonising pelvic pain for the best part of a decade after docs put it down to having "too much sex".
Sarah is so desperate for help that she's spending £7,000 from her wedding fund to pay for private treatment in Birmingham.
The 27-year-old from Belfast started experiencing pain when she was 18.
She told that the symptoms were mainly based around her bladder - causing her to suffer from regular bouts of cystitis and making sex painful.
"It was really bad... so I went to my doctor and they said ‘that’s just normal’," Sarah said.
"But it never went away, so when I was 19 I went to see a consultant and they said maybe it was an embedded infection.
"There’s just been years and years of investigation and any time I went to see someone you would wait years."
The main issue has been finding someone who would "believe" her, she said.
"I was constantly going to doctors and consultants and they would say there’s nothing wrong with you.
"Until the consultant, I saw in January 2018, no-one believed I was in pain."
She describes the pain as a "stabbing, burning pain below the belly button";.
Sarah lives with a constantly swollen stomach, constantly needs to pee and has bowel issues.
"I never feel like I am actually functioning - like I am in and out of reality."
When she was 20, she then saw a consultant who simply told her: "Maybe you should stop having so much sex".
“Any time I saw them, the first thing they would ask is: 'Have you had sex?' and I’d say: 'Yes' and they would say it was probably sex-related, hormone-related or something I had done," Sarah recalled.
"I felt like I was always getting nowhere - that my pain didn’t matter and I didn’t matter."
After nine long years, Sarah was finally been diagnosed by a urologist with pelvic floor dysfunction.
They prescribed nerve tablets and she was told that her pelvic floor muscle was overactive.
So, she started having pelvic floor physiotherapy but it hasn't worked.
"I started my pelvic floor physiotherapy and she kept saying we were getting somewhere, but we weren't not really - there must have been something else causing it."
Symptoms of endometriosis
Endometriosis is where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month, these cells react in the same way to those in the womb - building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
That can lead to infertility, fatigue, bowel and bladder problems, as well as really heavy, painful periods.
It affects one in ten women in the UK.
Symptoms include:
- Painful, heavy, or irregular periods
- Pain during or after sex
- Chronic pain
- Infertility
- Painful bowel movements
- Fatigue
The cause of endometriosis is unknown and there is no definite cure.
According to Endometriosis UK, it takes over seven years on average for women to finally receive a diagnosis.
It's estimated that up to 50 per cent of infertile women has the condition.
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Back at the drawing board, Sarah then forked out for private gynaecology appointments - where endometriosis was mentioned.
Despite having been to a gynaecologist three times, endo was never mentioned. It was only when she'd paid for a private appointment that she was told she may have the crippling condition.
With no experts available in Ireland, Sarah is now having to pay a doctor in Birmingham to investigate and treat whatever is found.
A decade on from her first appointment, Sarah wishes that doctors had made the connections years sooner.
"It really damaged me," she said, saying that medics should have dismissed her as a young woman with a boyfriend.
"I feel women’s health is not seen as an important part of healthcare. There are some amazing women in the system, like my physio and my urologist.
"They are trailblazing and delivering a fantastic service, but there are women out there struggling to find that one person that cares.
"For me it took nine years."
The average endo sufferer has to wait seven years for a diagnosis, with some waiting for up to three decades to receive adequate help.
We previously revealed how pelvic floor physiotherapy can help some women manage endo pain.
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Although Sarah says that her sessions haven't cleared her problem up, physio Maria Elliot told us that up to 90 per cent of the endometriosis sufferers she sees have overactive pelvic floors.
She said it can cause pain when you try to pee, poo or have sex, and to treat that, she gets her patients to do lots of breathing, stretching, and massaging, as well as finding the best lubricants to use internally.
So if you're one of the ten per cent of women who actually do have endo, it is worth seeing if you can get an appointment with a women's health physio.