"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"