"It took 20 years for a doctor to mention endometriosis"

This week it was reported that GPs are failing to treat women with common gynaecological complaints such as endometriosis, which affects about 2 million women in the UK.

A report by the all-party parliamentary group on women’s health said these issues were being treated with insufficient dignity and respect. A survey of 2,600 women found 40% of those with endometriosis had had to visit their GP 10 or more times before getting treatment, while many women were left feeling they were “going mad” after being turned away by doctorsdespite painful symptoms, and more than two-thirds of women received so little information from doctors that they resorted to searching for online for it. We asked our readers to share their experiences. Here is a selection of responses, with some names changed to protect people’s identities.

Kelly, 35, from London: Despite repeat visits to my family doctor, no one suggested endometriosis

I find it bizarre that it took 20 years of seeing a doctor about my incredibly painful periods for one of them to mention endometriosis. It’s a common condition, and I had many of the symptoms. Despite repeat visits to the GP throughout my teens and twenties, none of the doctors I spoke to suggested the condition. It wasn’t until I wrote down my symptoms and went to a female doctor that she said “That sounds like endometriosis” and I was referred to a specialist.

With premenstrual syndrome (PMS), doctors haven’t been able to help much. I’ve had judgmental responses to my questions, including one doctor who said: “maybe you’re an up-and-down sort of person”. This made me feel as though the doctor wasn’t taking my concerns seriously. I’ve never been given a solution, and continue to suffer with this problem. I’m trying alternative remedies now, with some success.

The best aspect of the care for my endometriosis came when I was sent to a specialist clinic. There, a nurse listened to me and respected what I was saying. Emotionally, this was hugely significant.

Olivia, 60: Chronic UTIs have plagued me since I was 13, but now I am getting the right help

By the time I was 13 I had had my first urinary tract infection. Over the next 25 years I had frequent attacks and was given varying courses of antibiotics. I saw a urologist in my 30s who said my urethra needed stretching as my urine wasn’t flowing out properly and was probably pooling in my bladder and causing infections. That didn’t work. So I was put on a low dose of trimethoprim, an antibiotic used mainly in the treatment of bladder infections, for about a year. This seemed to stave off attacks. Then the UTIs continued, occurring about every four months.

I was given lots of advice – don’t wear tight jeans, only wear cotton knickers – which was useless. I went to my GP who constantly tested my urine and sometimes found infection, sometimes not. I would have to cry, cajole and persuade them to give me antibiotics. It was very demeaning, as I felt dismissed and not taken seriously. I was made to feel it was my fault and that I imagined my symptoms. I was referred eventually to a urogynecologist who said she would “cure” me. I underwent a massive operation to repair a prolapse with mesh which went horribly wrong. I developed a terrible infection, haemorrhaged many times and had to have three blood transfusions.

Still the UTIs carried on.

At that point my GP said there was nothing the matter with me and I should get on with my life. Eventually I went to see another gynaecologist who repaired the damage the previous surgeon had done, and recommended I go to a specialist clinic in Haringey where they treat chronic UTIs. I was listened to carefully there, and treated so successfully that I have my life back. I am no longer in pain, I am no longer exhausted, and although I am still being treated, I believe I will be cured in the end.

Georgia, 38, from London: I’ve had thrush-like symptoms for eight years. I’ve heard of others experiencing the same

I have had thrush-like symptoms for around eight years now – near-permanent mild itching and discomfort. It’s much worse before my period and can make sex painful or uncomfortable. I’ve been to three different practices and about five doctors. I’ve got thrush creams and pills and bacterial vaginosis cream, none of which has ever helped. Some doctors have been more sympathetic than others, but they have not had very many ideas about what is wrong with me. I’ve tested negative for thrush on occasion.

I was finally referred to a local gynaecologist after about six years. They made a few suggestions but showed very little sympathy and did not identify what my problem was. There seems to be a huge lack of research and GP knowledge in this area. One of my doctors even said that straightforwardly, and others have looked things up online while I’ve been in their surgery room. My husband got tested for male thrush, and when he went to the sexual health clinic they told him it was now thought that men didn’t get thrush. I’ve heard about lots of other women having similar long-term problems. Mine was probably brought about by use of the contraceptive pill, as I didn’t have it before then. I feel that it’s linked to my body as a whole and is probably candida-related. This is a self-diagnosis after lots of research.

I know from talking to friends that I’m not the only one who suffers from whatever it is that I have. Many of them know someone who has something similar. I’ve used given up sugar, caffeine, alcohol and even wheat four years ago. This partly helped with some symptoms. I use natural things like yoghurt and essential oils to alleviate my discomfort, and have read several books about the problem, but nothing has got rid of it. It’s massively affecting my sex life with my husband.

Kacey, 18, from Brighton: I may never be able to have penetrative sex – but doctors don’t seem to know much about my condition

After two years of investigation, I was finally diagnosed with vulvodynia. This is a life-long chronic pain condition which involves the nerves in or around the vagina sending pain signals unnecessarily. I am only 18 and my life will never be normal. I can’t have sex with my partner as it is so painful I have thrown up and passed out. And although I have a diagnosis now, so many medical professionals are ignorant of my condition. I feel distraught when I think about the future. There’s so little research and the only “cure” is to be on constant medication that dulls the nerves. I am all out of hope. I may never be able to have kids naturally, or have penetrative sex with my partner. This leaves me feeling like I am ruining the lives of two people because there is such pressure to have penetrative sex as a young woman, or as a woman at all.

Of the care I’ve received, the best was from a vulva specialist at my local hospital and a psychosexual counsellor. They have helped me on my way to having a different, but equally loving, sexual relationship with my long-term partner. The worst care I received was about a year after my diagnosis, where a gynaecologist coerced me into a speculum examination. This was totally unnecessary and for several months it left me in even worse pain.

"It took 20 years for a doctor to mention endometriosis"

No one mention the war? Medics and the peace movement | Alice Bell

It started, as some issues do, with a letter to the Lancet. It was January 1951, the Korean War was in total force, and the letter sought to draw focus to how military investing was impacting on healthcare. Signed by seven distinguished doctors – including Richard Doll, famous for his perform on the link between lung cancer and smoking – it pulled few punches in its language: “Each pound spent on bombs signifies far more dead babies now.”

As a post from the University of Bradford describes, not absolutely everyone in the profession agreed. These have been political matters, of which there was no area in a largely scientific medical journal. But the unique signatories disagreed, extending their argument to add a deeper overall health frame to the problem: “War is a symptom of psychological unwell overall health. Its results include wounds and condition. Doctors are consequently properly concerned in preventing it.”

A forum was set up to debate this more, and after a meeting in March 1961, the Healthcare Association for the Prevention of War (MAPW) was founded. The present organisation, Medact – who just lately attracted interest for their role in the BMA’s decision to divest from fossil fuels – was founded in 1992, following the merger of MAPW with the comparable Healthcare Campaign Against Nuclear Weapons (MCANW).

The history of MAPW – and a few similar groups – was not too long ago marked at the the Wellcome Trust with the ‘Bed No Bombs’ conference launching their assortment of the history of anti-nuclear health care campaigning and protest. A lively event, it incorporated historical scholarship, personal reflections, photographs, archives of scientific investigation, newsclippings, banners and even song. Wellcome’s Elena Carter introduces her highlights of the collection in a post on Political Science nowadays, and you can see a gallery of far more of the archives as well.

MAPW sits inside of a more substantial neighborhood of folks energetic in the politics of science, technology and medicine of the late 20th century. As properly as MCANW, we heard from Alison Macfarlane from the Radical Statistics Group, who also presented us some historical past of Radical Nursing, Radical Midwives and the British Society for Social Obligation in Science. We learnt of the prestigious archive of Radical Statistics publications from 1975 onwards, and the way they utilized a “fanzine principle” to put their functions out and hope they would be passed on to folks have been interested. We learnt how their “Unsafe in their hands” leaflet – critiquing government’s use of statistics to talk about the NHS – ended up in Parliament, and was later on used for an episode of Channel 4’s Dispatches.

There is also a larger historical past of publish-war scientists towards the bomb (e.g. Pugwash) which was largely connected by physicists but integrated biomedical researchers as well. There is yet another Wellcome website link here. In 2007, they famously paid £250,000 for a Picasso at first drawn on the wall of scientist and peace activist JD Bernal after delegates to the 1950 Planet Peace Congress had been stranded in London. Moreover, as Peter Peter van den Dungen, also speaking at the Bed Not Bombs event noted, there is a significantly longer background of ‘medics for peace’ work, far past nuclear weapons. Georg Friedrich Nicolai created his idea of war as illness booklet in the light of the Initial Globe War, and there have been responses to biological and chemical warfare, as well as the quite notion of war, during the rest of the 20th century. Nuclear weapons brought a greater sense of urgency, as they did across the pacifist movement, but were not the complete story.

As an intriguing presentation from Christoph Laucht noted, anti-nuclear protest was – oddly probably – marked by expert activism. There is the old joke CND badge that ‘taxidermists say stuff the bomb’ but, regardless of whether a consequence of connections among peace and labour movements or one thing else, there was a proliferation of anti-war groups recognized by specific careers. Teachers, musicians, nurses, all sorts.

This left the question of weather such activity could spark again? Could we have accountants for action on climate modify, nurses against international warming, lawyers for a minimal carbon economy? Or are professions too tied up with quick worries of their own operate, and people to active, burdened by debt or just disillusioned by the chance for alter to talk up? Or maybe, the critics of Doll et al in 1951, they basically don’t really feel it is there area.

Alice Bell is a freelance author and researcher at the moment doing work on a history of the radical science movement.

No one mention the war? Medics and the peace movement | Alice Bell

Doctor"s Diary on sugar: Scaremongers fail to mention that it also saves millions of lives

Even so, this is just the most current scientific finding in a campaign to blame sugar for practically every little thing, particularly the so-called epidemic of diabetes and weight problems. It is not automatically that folks are consuming more sugar, but rather, it is claimed by Californian endocrinologist and prominent anti-sugar evangelist Robert Lustig, the incorrect kind: the cheap, higher-fructose corn syrup typically located in carbonated drinks that has replaced a single third of our complete sugar consumption in excess of the previous thirty years.

The current report from the Department of Energy that, on average, our residences are seven degrees Fahrenheit warmer than in the 1970s is scarcely surprising, as 40 years ago, two thirds did not have central heating. This has manufactured us perhaps a less hardy nation – not like elsewhere, as I learnt from a Russian patient who, with her husband and 3 kids, celebrated the Orthodox Feast of the Epiphany on January 19 with a swim in an outdoor pool in south London.

This chilly ritual has been taken up with great enthusiasm because the fall of communism. The spiritual rewards are paralleled by the physical and psychological, as recommended by a research of 49 winter swimmers carried out by Prof Pirrko Huttinen of the University of Oslo, published in the Worldwide Journal of Circumpolar Health. Above a period of four months, they reported an improvement in memory and mood, much less stress and fatigue, and lowered signs and symptoms of rheumatism, asthma and fibromyalgia.

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The young female featured last week with a variety of distressing neurological signs and symptoms following her return from a backpacking vacation in West Africa has elicited some valuable observations. Initial, an RAF Group Captain, now retired, reviews the exact same pattern of events following a sailing vacation on Minorca in 2007, commencing with a serious sore throat, major to deafness, loss of balance, facial palsy, trouble in swallowing and double vision. It took sixteen months to recover, and even now he is even now really deaf, his stability is bad and, bizarrely, his left eye closes at the breakfast table when consuming and reading through The Daily Telegraph at the exact same time.

This pattern of symptoms, observes neurologist Dr John Boughey, is strongly suggestive of an inflammatory process in the brain stem, possibly induced by the herpes simplex virus – even though there are a number of other feasible candidates. The signs must proceed to boost, albeit gradually, although the vertigo and clicking in the ear warrant a more assessment from an ENT professional.

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Finally, my thanks to a reader for passing on a most beneficial tip for those troubled by recurrent cystitis – as she has been for 15 years. Her GP arranged for her to have an ultrasound of the bladder, which demonstrated some residual urine. She was advised to stroll about the bathroom for a couple of minutes soon after passing urine and to then attempt once again. The outcome of this practice has been “astounding”: she has not had cystitis because.

Email healthcare concerns confidentially to Dr James LeFanu at drjames@telegraph.co.uk. Solutions will be published on the Telegraph website each and every Friday, at telegraph.co.uk/wellness

Doctor"s Diary on sugar: Scaremongers fail to mention that it also saves millions of lives