Older generations of women have described living with “excruciating” chronic pain for decades as a leading health historian warned that little progress has been made in diagnosing and treating women’s health conditions in more than a century.
Women aged 60 to 84, who discussed their experiences with i, said they had witnessed a societal shift in awareness surrounding conditions like endometriosis and chronic urinary tract infections (UTI) and how topics such as periods and menopause have become less “taboo”.
But diagnostic tests and treatment options have stayed largely the same, according to a leading women’s health historian, and now sufferers are calling for raised awareness to translate into real world action.
Two endometriosis sufferers told i they were left needing a hysterectomy, aged 38 and 40, after having children. A third, also living with endometriosis, described going into a “catastrophic” menopause in her 40s after two failed rounds of IVF followed by invasive surgery to treat the condition.
Meanwhile, a chronic UTI sufferer in her 60s said she felt “angry” that little has changed in terms of diagnosing and treating the condition since she first developed an infection in primary school.
Progress in the diagnosis and treatment of chronic women’s health conditions has been “painfully slow”, women’s health historian Dr Agnes Arnold Forster said.
She outlined how endometriosis was first named in 1921, but over 100 years later, diagnosis still takes an average of 7.5 years and requires invasive surgery. There is still no definitive cure for the debilitating condition and it can be difficult to treat.
“Think of all the millions of women who have had entire lifetimes in that time period where, in theory, they could have had a doctor who knew what was wrong with them, and yet their pain would have been entirely unalleviated. That’s still the case,” said Dr Arnold Forster.
The academic, who specialises in the history of medicine and healthcare, has also found archival evidence of “chronic cystitis” in hospital records from the 19th century.
However, the term “chronic UTI” was only publicly recognised by the NHS on its website in March last year and the term is still not used in medical guidelines designed by the National Institute for Health and Care Excellence (Nice).
She said it was taken seriously in times before antibiotics as untreated bladder infections could quickly develop into sepsis. The most common treatment was to flush the bladder with a sterile liquid, which is still sometimes used today.
Dr Arnold Forster said: “We have all of these amazing advances in medicine and so many things about healthcare today are infinitely better than they were 30, 40, or 50 years ago. But then, when it comes to women’s health, particularly chronic conditions, the rate of progress is so slow and sometimes doesn’t even move in the direction you might expect.”
She called for the Government to pour money into researching chronic women’s health conditions to improve understanding for doctors and to develop better testing and treatment options for patients.
“We need to go beyond awareness raising, which is obviously important, but healthcare professionals need to look at themselves and change the way they work. Otherwise, things aren’t going to get better for people,” she told i.
An 84-year-old woman, Carol, who suffered from endometriosis, and its “evil twin” condition adenomyosis, told i that a hysterectomy at the age of 40 had saved her “life and sanity”.
“I’ve had a totally brilliant life so far and I can’t imagine living as long as I have done with that condition,” said Carol, who lived in West Yorkshire at the time of her surgery, but has since moved to Norwich.
But nearly half a century later, the treatment options remain largely the same – with a hysterectomy being the only known “cure” for adenomyosis. Invasive surgery is still required to diagnose and treat endometriosis, with no guarantees that it will cure the condition.
Endometriosis occurs when tissue similar to the womb lining grows in other places such as the ovaries and fallopian tubes, causing pelvic pain and fertility issues. Adenomyosis happens when the womb lining grows into the muscular wall of the womb, causing long, heavy periods, severe period pain, bloating, and a feeling of pressure in the tummy.
Another sufferer, Marcella, 60, went through several rounds of failed IVF treatment to try to have a baby and believes she may have been able to conceive if there was more understanding and research into endometriosis when she was younger.
She first experienced “excruciating pain” when her first period came at the age of 14, while she was on the train home from school. She said: “I didn’t care who was looking at me, I just had to press my head against the cold window to try and cool it down a bit. It was just so intense and sudden.”
But she did not tell anyone, including her mother, and she did not go to a doctor. She dealt with the pain, which came every few months, completely alone until her 30s when she and her former husband started looking into fertility treatment as they were struggling to conceive.
Marcella mentioned the pain at the IVF clinic but she said the clinicians did not do any further investigations and went ahead with IVF as normal but neither rounds were successful. “It was just all so devastating,” she told i.
It was only after the IVF treatment that she went back to doctors as she was still getting intense pain.
She was eventually diagnosed with endometriosis aged 44 via a laparoscopy – a surgical procedure that allows a surgeon to access the abdomen. She went into early menopause soon after and never had a period again.
“When I went home and read up on endometriosis I just cried, I really cried,” she said. “I was angry and sad that the IVF clinic didn’t spot it. I was quite depressed after all that.”
Marcella and her ex-husband eventually adopted their daughter, who is now 21 years old. “I am her mum, I am her parent. It doesn’t matter that she didn’t come out of me. We are bonded,” she said.
She is now able to control the condition using medication and nutrition and said she is “more energetic and capable” than she was when she was younger.
Marcella called for schools to educate girls that “severe pain during menstruation is not normal” and for women to be listened to and investigated when they go to the doctor with a variety of endometriosis symptoms.
‘I thought I was dying when I got my first period’
Carol, 84, said she feared she was dying due to the agonising pain of her first period, aged 11, but there was no one she could speak to about it – not even her mother.
“Nobody knew what endometriosis was and also, ladies never talked about their period then. It was all forbidden,” she told i, recalling life in the 50s and 60s.
Asked whether she could open up to her mother, she said: “Not really, no. My mum and I didn’t have that kind of relationship and she would have been too embarrassed anyway, being of that era.”
Describing the pain, she said: “There’s nothing quite like it. Mainly stomach pain, back pain. In the end, it was a lot of pain most of the time. Not just when I had my period but almost up to the next one. It was quite hard to take.”
Carol first went to her GP about the pain in her late teens but went on to attend numerous doctor appointments and see several consultant gynaecologists when the pain worsened in her 30s, after the birth of her two children.
“The only one I can remember was this quite unsympathetic lady,” she said. “She asked me if I had mental illness in the family. I think they thought it was pure exaggeration.”
In her late 30s, she finally saw a new gynaecologist who immediately advised her to get a hysterectomy. He used a phrase she has never forgotten: “If it was my wife, she’d be operated on tomorrow.”
“It did sound a bit horrible having a hysterectomy,” said Carol, who lived in West Yorkshire at the time but has since moved to Norwich. “But I’d had two children so I thought ‘go for it’ if I can get my life back because I was physically quite worn out all the time. It was lovely to be listened to.”
By that stage, she was struggling to cope with bringing up two young children and working part-time at the local school while dealing with agonising pain three out of four weeks every month. She said she is grateful for having a “very, very understanding husband”, but she was never able to discuss the condition with anyone else who had it.
Carol had a hysterectomy aged 40. She said it saved her “life and sanity” and she could not imagine living another 40 years with the pain because “no one understood it, talked about it or even named it”.
Laura Bowie, 66, who struggled with “awful pain” and heavy bleeding since she was a teenager, said it is “great to see people being more open and sharing experiences”.
She said her own mother was “totally embarrassed” when periods came up, despite suffering from heavy bleeding herself, so her father and grandmother stepped in to answer any questions.
Ms Bowie was put on the pill aged 20 to help treat endometriosis symptoms but she eventually had a hysterectomy at the age of 38, after the birth of her two children. “I got my life back after the hysterectomy if I’m honest,” she said.
Her daughter has similar issues with heavy and painful periods. They can discuss their problems openly with one another, and information is more easily accessible, but referral, diagnosis and treatment is still taking too long, one generation down the line.
Ms Bowie said: “Not everyone believes in women’s pain, and it does not get the focus it deserves, which is sad. You would expect after 100 years we would be in a better place.”
She called for endometriosis to be researched further, for new treatment options to be developed and for more education for “all concerned”.
Angela Dullaghan, 61, recalled first suffering from UTIs when she was in primary school but symptoms became chronic when she was in her 30s.
Specialists say the infection, which often begins as an acute bout of cystitis, can occur when bacteria become embedded within the bladder wall and become difficult to treat with short courses of antibiotics.
Ms Dullaghan was not open about her bladder problems in her 20s and 30s as “people tended not to talk too much about what they do when they go to the toilet”.
“I think that probably led to it taking a long, long time for me to get a proper diagnosis and to eventually find somebody to treat me because it’s not something you talk about,” she said, explaining that she grew up not knowing whether her bladder problems were normal.
Younger generations are “not afraid” to be more open about potentially awkward topics, she said, which makes a “great difference” in making adjustments at work when needed and helping friends and family to understand.
However, she said diagnostic methods and treatment options have “not changed an awful lot” over the decades she has suffered with the condition.
She said she did not eat an orange for 10 years after three urologists at two different hospitals told her to make “lifestyle changes”, including altering her diet and cutting out bubble baths, which did not help.
It was only four years ago that her condition began to improve after she saw a private specialist at Harley Street Clinic in London, where she was treated using long-term antibiotics.
Hearing that chronic cystitis was known about since the 19th century, but the condition has still not been universally accepted by the healthcare system, made her “quite angry”. “The fact that this has been known for a century or more, it’s ridiculous that nothing has been done about it,” she said.
“I do sometimes think it’s because it’s a woman’s complaint,” she added, explaining that she has felt dismissed as a “hysterical woman” by some doctors.
The NHS previously told i it is currently “co-ordinating a programme of work to improve the outcomes of people with UTIs and NHS staff are provided with detailed information and training to ensure that they can provide the best possible treatment to patients”.
The Department of Health and Social Care and the National Institute for Health and Care Excellence have been contacted for comment.