Women discuss endometriosis: 'No one believed I could be in such pain from a period'

A huge number of women with endometriosis rushed to respond to the Guardian’s coverage of the issue, inspired to share their experiences of the rarely discussed disease in the hope of helping others.

Although an estimated 176 million women around the world suffer from the ‘secret plague’, too few primary care doctors know how to diagnose it and the specialists to whom they are sent are ill-informed, the Guardian revealed.

The Guardian’s coverage struck a chord with sufferers who too often spent years searching for a diagnosis. Although women will often find themselves with a prescription for the contraceptive pill, far too many are sent away by a doctor who tells them it’s all in their head.

A lack of awareness generally, social stigma over reproductive health problems and uncertainty over what level of pain is normal – specifically around menstruation – were often cited as hurdles to obtaining treatment.

Here’s a selection of their stories.

“I struggled to convey to anyone how ill I was, or how much I was suffering”

A number of people say there is already an awareness of endometriosis, and if you see the right healthcare professionals that is true. But you have to get to that point first. By the time I was diagnosed I had endured years of painful periods, and several opportunities for healthcare professionals to investigate further, such as when they found the cyst during my pregnancy.

When I became pregnant with my daughter at the age of 35 they found a substantial ovarian cyst on the antenatal scan. Bizarrely, no one ever really mentioned this might be a problem. In the year after my daughter was born, I had a number of extremely painful periods and was hospitalised on one occasion with excruciating abdominal pain, which was dismissed as the cyst twisting. There was no ultrasound available that day so I wasn’t scanned, but I was told that I could ask for an ultrasound at my local hospital if I was still worried. Although the pain was excruciating, it wasn’t constant and it coincided with my monthly cycle.

I mentioned my painful periods to various healthcare professionals, for example the nurse when I went for smear, and it was always dismissed as normal. It wasn’t until I had another absolutely horrendous bout and went to my GP out-of-hours that he could see for himself just how much pain I was in – a pain much worse than labour pain – that I was taken seriously and referred. The response after the ultrasound and MRI scans was basically “blimey, you’ve got a massive endeometriotic cyst, how have you been living with that?”. And finally I was able to acknowledge how ill I was.

I waited eight months for a laparoscopic operation, which in itself was fortunate as they were initially going to do it open because of the size of the cyst. This successfully removed the cyst and one of my ovaries, during which time I took the pill full time and some brutal painkillers to keep it at bay.

I’m a well paid, well educated and confident woman. Yet I struggled to convey to anyone how ill I was, or how much I was suffering. I felt guilty about missing work – as if taking time off “just for period pain” was somehow skiving. I think this has a huge amount to do with our confusion as women – and society more generally – as to what constitutes a normal or acceptable amount of menstrual pain.

“No one believed I could be in that much pain from a period”

I lived with awful period pain for years and finally, at 25 years old, I had to call myself an ambulance from my office of 50 people. No one believed I could be in that much pain from a period.

I had laparoscopic surgery and was told the only cure was to get pregnant quickly. He told me that if I waited until 30, I would never have kids. He said I might well be infertile already.

Luckily I found a very clued-up woman gynaecologist from New Zealand who told me this was utter rubbish – thank goodness I didn’t get pregnant by then partner – and fitted me with a Mirena [IUD contraceptive] coil. I have been delighted with this treatment. It stopped my periods and pain altogether. In 15 years, apart from changing the coil every five years as you must, I have taken it out twice to get pregnant, and was very lucky in conceiving pretty much straight away.

“It blighted my whole life. It used to feel like I had a pelvis full of razor blades”

I suffered with terrible period pain for years and my mother just told me that “periods are painful when you’re young”. They steadily got worse as I got older. Whenever I went to the doctor I was always told it was probably just menorrhagia and given painkillers. They didn’t work and often seemed to make it worse.

Nobody was sympathetic, not even other women, who thought I was exaggerating. I had to give up working in my 40s as nobody wants to employ somebody who can’t work for three or four days month. It used to feel like I had a pelvis full of razor blades.

A doctor finally suggested an hysterectomy, but I suggested keyhole surgery instead, as I had read about endometriosis and I was sure that was what I had. They eventually agreed to it and they managed to unstick the parts of my insides that had become fused together and I had a Mirena coil fitted. I haven’t had pain or a period since and that was 10 years ago.

I’m 58 now and it certainly blighted my whole life. I often think that if men suffered with something that caused agonising pain for hours, and sometimes days every month and for years, people would not dismiss it.

“I dread to think what my 20s would have been like if I hadn’t been diagnosed”

I count myself as lucky that I was diagnosed at 20 and have been trouble-free through to 30 due to surgery and an IUD. Still, I suffered several years of debilitating pain through my teens. I had never even heard of endometriosis when I was finally diagnosed. I hope your campaign reaches the girls and women who are suffering in silence and losing their fertility, unaware that this disease exists.

I’m testament to the fact treatment can work, and I dread to think what my 20s would have been like if I hadn’t been diagnosed. I’m so pleased to see this article in such a prominent position.

“Despite being surrounded by medical professionals, it took three years of utter misery before my problem was taken seriously”

I was a health scientist, married to a hospital doctor, and a busy mum to three lively under-10-year-olds when I battled with endometriosis. Despite being surrounded by medical professionals, it took three years of utter misery before my problem was taken seriously.

We were living overseas at the time, in a wealthy country where gynaecology was the best-represented of the medical specialties; our phonebook listed no fewer than 113 for a population of just under 300,000. Yet I was simply prescribed an ever-increasing cocktail of oestrogen, progesterone and ibuprofen by no fewer than four different specialists over a two-year period.

At the worst point, I was bleeding heavily every day of my cycle and the pain took over my life. My professional life was put on hold and, although we recruited a gem of an au pair to help with the kids, I sometimes felt life wasn’t worth living. My husband tried to be sympathetic, but since the four experts were taking the problem lightly, he wasn’t as concerned as he ought to have been, and freely admits that now.

When I finally sought help from a friend of my own age who was newly qualified in gynaecology, and herself a young mum, she referred me to her professor as a private patient. He diagnosed stage-four endometriosis, and performed an urgent hysterectomy/oopherectomy four days later.

I was 36 when it happened and our family was complete. But it was still hard to accept because I felt it could have been avoided if I hadn’t been dismissed as an over-emotional, pre-menopausal woman for so long. However, the sheer relief of not battling with debilitating endometriosis and the anaemia it caused far outweighed my initial fears.

All of this was a very long time ago, and I was able to rebuild my life. It is depressing, though, to learn that other young women are still not getting the help they desperately need.

“I tried a gestagen IUD, which meant that my periods stopped, but so did the pain from my endometriosis”

I was diagnosed with endometriosis more than 10 years ago, but have had the disease since since my late teens. I am now 39 years old and I can relate to the stories about how all sorts of different diagnoses are given by doctors. It felt so good to finally understand the reason for the three days of extreme pain every month. Because I once suffered a blood clot in my lung, I was forced to find another form of contraceptive than the pill. I was advised to try a gestagen IUD, which meant that my periods stopped but so did the pain from my endometriosis. Usually this form of contraceptive is not advised for women who have not yet given birth because the uterus is still so narrow that it can be very painful. The first couple of days it was, but in the long run I far prefer that to the three days of pain every single month. I have since had two children and have gone back to the gestagen IUD every time.

I hope this can help someone else because I have never heard any doctor mention this treatment as a possibility.

“I only suffer from a mild condition, but its been enough to disrupt my personal and professional life at times”

I was misdiagnosed for over 10 years before finding out what was really going on. I’ve been reluctant to use drugs or synthetic solutions. I found that natural methods of boosting progesterone in the body is definitely one of the best ways for me, alongside removing things that inflame your insides or add stress and burden to your body and mind. I only suffer from a mild condition, but its been enough to disrupt my personal and professional life at times. I’m committed to naturally rising above it through diet, exercise, meditation and natural therapies. So far, so good. I understand a natural approach is not possible for all women, and especially women who suffer from severe cases of this. Big hugs to all the women out there whose lives are impacted by this condition. My gynaecologist has been great in helping me through it all, but he is also the first one to admit there isn’t enough information out there and that most doctors aren’t equipped to recognise, support and manage the condition.

“It’s a disease that needs treatment, which means the monitoring of hormones and surgery”

I’ve recently had a hysterectomy and one ovary removed, plus corrective surgery on my colon, whereby my uterus was fused to my colon. I was very lucky that this time I finally got channelled to the right doctor and surgeons who did a superb job in giving me back my life.

I’d been suffering with this for over 20 years, all which could have been avoided or managed with more knowledge by doctors and gynaecologists. Diet and lifestyle alone is not the answer, it’s a disease that needs treatment, which means monitoring of hormones and surgery. Please, there needs to be more discussion on endometriosis and more awareness and discussion on bio-identical hormones in the UK.

“It is a horrible condition. It cost me relationships and it ruined my body”

I discovered giving birth was relatively painless compared with the pain I experienced every month: it seems that my periods really did hurt.

Now, at 51, I’m fine. I have accepted the consequences and I am not in pain. I lost so much of my 20s and 30s but I’ve got everything I need now. I have a good, caring partner and grandchildren. At 25 years old, I began having pain between periods. I found standing up difficult, sex painful and conventional work impossible. I felt sick, depressed and as though no one believed me. I took work as a cleaner but only in large houses where the owners were absent. This was so I could lie down with my feet propped above my head whenever the pain became too much. My life was consumed by this condition. I rarely take painkillers now, but back then I gradually found myself on quite a cocktail – as comparison, I had none when I was in labour.

I was eventually sent for an ultrasound. Quite unprofessionally, the radiographer, a man, said: ‘I hope you’ve had all the children you want, this doesn’t look good.’ My bowel was stuck to my womb, one ovary adhering to my bladder, the endometriosis had invaded my pelvic cavity on a grand scale. Ablation and hormones was not going to be enough to conquer it.

Two months later I had a hysterectomy and both ovaries removed. It was Valentine’s Day and my boyfriend dumped me. He couldn’t cope, and the following day I began HRT and an open university degree. I mourned my lost fertility but I was lucky that I already had children. The HRT induced further outbreaks and it took long breaks from hormones, more surgery and a couple of goes at the menopause for everything to settle.

It is a horrible condition. It cost me relationships and it ruined my body. I have pelvic organ prolapse now after so much surgery and it crushed my self-esteem. It is such a private and unseen suffering. I am so glad it is better treated and understood now and let’s hope for every woman the learning continues.

“I was told by two male GPs that I was neurotic and depressed. Of course I was depressed: I spent half of each month writhing in agony”

I had endometriosis for seven years. I suggested this might be why I was in excruciating pain every month – fainting, having to sit on a plastic bag as I was bleeding so heavily – after reading an interview with Hilary Mantel. I was told by two male GPs that I was neurotic and depressed. Of course I was depressed, I spent half of each month writhing in agony. Another emergency GP suggested I might be having an allergic reaction to bath oil.

I had had two children but was so ill that in the last two years it was becoming impossible to look after them, let alone work.

What saved me was my husband getting private health insurance as part of a new job. Suddenly, I was able to be scanned and operated on with keyhole surgery. I now have a hormonal implant and the miraculous Mirena coil. Life has returned to normal.

“I was told it was all in my head, then diagnosed with illnesses I didn’t have”

I too was told it was all in my head, then diagnosed with illnesses I didn’t have. I was even told that I didn’t have endometriosis at one point without even having surgery. I also had a referral refused by gynaecologist, after seeing them around three times, as they said that my problems weren’t gynaecological and I needed to be seen by someone else. This came from a BSGE [British Society for Gynaecological Endoscopy]-accredited hospital. It’s all good and well having these facilities but if GPs and gynaecologists can’t spot the illness in the first place it is pointless.

Thank you Guardian for this awareness. Every article like this gets us a little bit closer to better treatment and fast diagnosis.

“A consultant told me that there was no treatment available other than to have a child soon”

As someone who had to take a day off work each month or miss social occasions, eat painkillers like sweets and pass out from the pain, I know just too well how debilitating this can be. Like others, I had an investigatory operation once I realised my pain wasn’t the norm and this was after about six years of it starting really badly.

The results came back inconclusive. I was left hopeless as the consultant told me that there was no treatment available other than to have a child soon. I fought back tears as having a child wasn’t in my plans and so I continued on, eating painkillers and having a frank and open discussion with my employer who was very uncomfortable having discussions about ways to manage. Many years later, I did have a child. The pain has gone although I’ve been told it’s likely to be temporary.

I have had one doctor tell me that pains are worse because women are leaving it much later than our parents and previous generations to have children. He also said that’s why there has been a rise in the number of women with this complaint. I’ve also been told paracetamol and an early night helps!

“The medical profession are too quick to call for a hysterectomy”

As an endometriosis sufferer myself, I have not only had to battle this insidious disease, I have also had to battle the ignorance of doctors and surgeons who should know better. The medical profession are too quick to call for a hysterectomy without considering less invasive and natural options such as changing diet to control endometriosis outbreaks.

There are several well founded medical studies where diet has been linked to the growth of endometriosis. I have followed the endometriosis diet over the past year and found a significant change in the severity of my outbreaks. I have been able to starve off the directed hysterectomy my gynaecologist had ordered.

“I also internalised shame and the taboo of speaking up”

I have endometriosis and it has meant huge amounts of cyclical suffering and truly indescribable levels of pain. I also internalised shame and the taboo of speaking up about it, which also meant 20 years of suffering before having a diagnosis.

I urge any women with painful periods to seek out a helpful GP and gynaecologist and if they are not helpful and compassionate, keep seeking. Because of my experiences with doctors and, at the time having bad side effects and seeing a negative portrayal of the pill, I moved from a medical to a holistic path. This resulted in many years of expense and frustration, all because those practitioners were actually compassionate. However, I can testify it didn’t help.

I really value de-stigmatising journalism, and I hope that other women get the diagnosis and treatment much, much earlier than I did. Endometriosis Australia are a helpful organisation and they also have a Facebook group. My fertility has been OK so far and I have had two pregnancies. But even with surgery, which I have had, this is a life-long condition that can recur.