When the BBC reported that waiting lists for gynecology appointments across the UK It had more than doubled. Since February 2020, many women have shared their experiences of how they feel forced to turn to private care.
Women agonizing over treatment for critical gynecological conditions are turning to the private sector in the hope of being quickly sent to the top of the NHS waiting list.
The experiences of many of the people who spoke to the BBC echoed what we are hearing from women working in the sector.
Signed by the heads of 11 leading women’s health organizations. An open letter Urges the public and health professionals to take part in their “Transform the NHS” conversation.
She said: “Women and girls are repeatedly left to ‘fall through the cracks’ of government policy.”
The Royal College of Obstetricians and Gynecologists says the debate around the govt 10-year health plan There is an opportunity to lobby for the “critically needed” funding and system-wide support needed to transform women’s health.
An NHS spokesman said: “While the latest figures show that NHS staff are making progress in reducing waiting lists and tackling backlogs, we know that long waits for care Much remains to be done to reduce the incidence of breast cancer, especially for women waiting for important appointments and treatments.
“We welcome feedback from people working in women’s health services through Change NHS – including in every local care system – to drive forward our work to improve services for women. Including developing a network of women’s health champions and expanding neighborhood women’s health centers across the country – giving thousands more women access to expert women’s health teams in the community.”
Claire, 40: ‘I was asked to suck polo’
Forty-year-old mum Claire had a hysterectomy – an operation where the uterus is removed – 12 weeks ago.
The mother-of-one needed surgery to get rid of her “weakness”. Endometriosis And adenomyosis.
Claire spent more than £10,000 on surgery with a private consultant – the same one she is on a three-year waiting list to be seen by the NHS.
“It was the last option, it was desperation,” she says.
Claire, a librarian, struggled through her teenage years to get anyone to take her pain seriously. It wasn’t until she was 22 that she was diagnosed with severe endometriosis.
The diagnosis gave Claire, who had always been told her pain was related to irritable bowel, hope. She recalls her mother being told by a doctor: “I think it’s just IBS. Get her to suck on polo mint.”
But the diagnosis of endometriosis was just the beginning of the ongoing battle for faster NHS care.
“This [gynaecology] Appointments are our lifeline,” she says. “We’re in so much pain but we know it’s okay because in a few months we’ll see that consultant or doctor, and then it’s heartbreaking when they cancel. goes
“I was getting a good week out of every month and around that it was about managing the pain and its emotional impact.”
Now Claire, who also suffers from premenstrual dysphoric disorder (PMDD), a period-related condition that causes extreme distress, must be weighed against how dependent on expensive private care he may be while continuing his treatment.
“I know I’m in a privileged position to be able to be private,” she says.
“The nurses were amazing, the after care was all followed up, they referred me to the physio. But I now need to continue with the NHS because otherwise, where does the cost end?”
Pippa, 50: ‘They opened me up and found a cyst the size of a brick’
“I’m not the type of person to make a fuss,” says Pippa, a retired cafe owner.
She had experienced “terrible pain” in her stomach for months, but after three visits to her GP she repeatedly walked away with a prescription for antibiotics to treat a possible infection.
But eventually a friend encouraged her to “pester” her GP for a scan.
As a result, Pippa was rushed to hospital for emergency surgery to remove an 8lb (3.6kg) ovarian cyst – the size of a brick. The surgical team had to replace their usual container with just a bucket to hold it.
“It’s a bit of a blur because it was so painful,” she says.
Her care with the NHS, she says, was “frustrating” and her time spent recovering in hospital was cut short by pressure on beds.
Pippa has suffered life-threatening pain from the effects of the cyst on her limbs, as well as nerve damage in her leg, which she now receives daily treatment for.
“Maybe if I had pushed for the scan earlier it would never have been so bad and I wouldn’t have found myself in this situation.”
Amy, 40: ‘I feel like a 40-year-old in a 90-year-old’s body’
Amy was misdiagnosed as having irritable bowel syndrome until a procedure at age 26 revealed she had severe endometriosis.
After diagnosis, she received support within the NHS, including access to a pain management clinic and an endometriosis specialist. But in the wake of the Covid pandemic, support “wasn’t there” as the NHS struggled to cope with demand for its services.
“We spent £2,000 looking at it. [gynaecology] consultant privately,” says Amy, who has used private appointments to get referrals to the NHS for surgery.
“My advisor has my best interests at heart.” says Amy, who can’t treat her until she reaches the top of the waiting list.
“Three years ago we lost our baby girl at the age of six months. [in pregnancy]. I’m pretty sure it was due to complications from my endometriosis. I think there are not enough experts to look at our scans.”
Today, Amy’s endometriosis has progressed to the point where she needs a full hysterectomy and may need to have parts of her bowel removed.
“My consultant told me the wait with the NHS is two to three years, so if I can afford it, I should. So that’s what I’m going to do.”
“This will be my seventh surgery but I’m still scared because I’m not sure I’ll be in a much better place after this. I have no choice.”
“I lost a lot of my life because of it. You just get used to having no energy and you can’t really do much. I used to feel like a 40-year-old in a 90-year-old’s body. I am.”
Bethany, 27: ‘The doctor said you either don’t have any pain or have babies, it’s up to you’
Bethany regularly got into trouble at school because of her poor attendance record, which began when she was just 12 because of menstrual cramps.
When she started her first job in retail, her coworkers thought she was “lazy” or “couldn’t be bothered,” but fatigue left her unable to work a full day on her feet.
“I would go under my car at lunchtime and fall asleep because I was so tired,” she says.
Her hobbies of rock climbing, horseback riding, and hiking gradually faded away, and her daily life became limited by her pain.
At age 20, Bethany was diagnosed with endometriosis and walked away with a huge decision.
“I was told that a hysterectomy was the only option for me,” she says.
“My friends were just leaving university thinking about getting their first job and there I was thinking, am I going to have children? Do I need to freeze my eggs or start saving for IVF? ?”
“The doctor told me, either you don’t have pain, or you have children.
On family advice, Bethany sought a second opinion within the NHS, but it took two years to secure an appointment and a further 18 months for another procedure.
“By then I couldn’t move my legs,” she recalls.
Bethany’s endometriosis had begun to affect her bowels and she was recommended to see a colorectal surgeon for further examination. Bethany is still waiting for a referral.
She is now seeking treatment through private health insurance.
“I cannot express in words how deep is the sorrow of the life I could have and should have had.”
Saschen, 33: ‘I used my student finance grant to pay for my first date’
Saschen was in his first year of university when he started having stomach pains.
Saschen, a consultant in the health and health care industry, noticed that her weight was increasing rapidly, causing her so much discomfort that she was not giving lectures.
Originally, doctors suspected she had pelvic inflammatory disease as a result of the contraceptive coil, but further scans revealed a cyst on her ovaries as well.
While other students were attending social events, Saschen was stuck in the halls of residence, unable to walk. His friends would bring him food and sit with him to keep him company.
But she needed extra help with her care and was forced to suspend her studies for a year to return to her family home.
While waiting for her appointment, Saschan was in and out of A&E. At her worst she was there three times a week.
Eventually, she decided to pay to see a counsellor, who also worked privately in the NHS.
The consultant referred Saschen for surgery through the NHS and removed five liters from the cyst and after fast-tracking her NHS appointment, removed her ovaries and one of her fallopian tubes.
“I used a grant from my student finance to pay for that first private consultant appointment,” she says.
In total, Saschan spent around £2,000 on private appointments.
“My mom told me, if we have to remortgage the house to pay for the surgery, that’s what we have to do because you can’t put a price on your life.”
Four operations later and Saschan has been diagnosed with further endometriosis and has been treated for fibroids and a hiatus hernia which have been exacerbated by waiting for surgery on the NHS.
“I don’t think the menopause system recognizes that even though you can’t see your uterus or ovaries, when you’re in the position where you’re having them removed, it reveals a lot of things. It’s how you feel about your identity and what you perceive as your experience of women.”