Endometriosis Awareness Month: Don’t suffer needlessly
[Updated Dec 5th 2017]
March is Endometriosis Awareness Month, with the 3rd Annual Worldwide EndoMarch taking place in dozens of cities around the world on Saturday March 19th. Endometriosis is an extremely painful condition that’s as common as diabetes or asthma, affecting an estimated 1 in 10 women1. However, it is shockingly under-diagnosed, with many women not knowing they have the condition. Many sufferers struggle, as I did, to be taken seriously by doctors, who may misdiagnose the condition as ‘bad cramps’ or irritable bowel syndrome (IBS). It’s also mistakenly thought to be an ‘older women’s disease’, but in fact can affect any child-bearing female; teenagers can suffer from the condition too. It can be a long battle to get the condition treated, before lasting damage is done. Endometriosis is one of the leading causes of fertility, with up to 50% of women with infertility having the condition, according to the Endometriosis Association of Ireland.
With the condition, cells from the lining of the womb appear outside of the womb, most commonly in the pelvis. The cells can cause an inflammatory reaction and attach to other organs, like the ovaries, fallopian tubes, bladder or bowel, causing scar tissue and debilitating pain for sufferers. It can also cause intestinal and bladder issues, which can lead to misdiagnosis.
The disease can have a hugely negative impact on other areas of the sufferer’s life, with ongoing pain and exhaustion affecting their social life, relationships and career. A 2011 worldwide study on the societal impact of endometriosis found that:
- Women with endometriosis experienced an average delay of 7 years from symptom onset until they were finally diagnosed and treated;
- Two-thirds of women sought medical help for their symptoms before the age of 30 (one-fifth below the age of 19);
- 65% of women with endometriosis presented with pain, and one-third of these women were also infertile;
- Infertility alone, without pain, was reported in 14% of women with endometriosis and 29% of those who did not have endometriosis.
- The severity of endometriosis (r-AFS disease stage) did not reflect the severity of a woman’s symptoms;
- Women with endometriosis suffer a 38% greater loss of work productivity than those without endometriosis – this difference was mainly explained by a greater severity of pain symptoms among women with endometriosis;
- Reduced effectiveness at work accounts for more loss of work productivity than time missed from work;
- Non-work related activities, such as housework, exercising, studying, shopping and childcare were also significantly impaired by the painful symptoms of endometriosis;
- The pain symptoms of endometriosis reduce quality of life, with the impact being mainly on physical, rather than mental, health. As symptoms become more severe, quality of life is further reduced2.
(Summarised by endometriosis.org.)
Four years later and it can seem that little progress has been made in terms of awareness – both in sufferers and amongst medical practitioners. Extreme, period pain that severely impacts day-to-day life is not normal. It should be referred to a specialist for help, but is often dismissed out of ignorance by health practitioners, or by sufferers themselves (who later say things like “I just thought all other women suffered like I did”).
Path to diagnosis
In my case, I experienced stabbing pain every month, as well as IBS symptoms and tiredness. Multiple doctors (male and female) told me I was ‘just unlucky’, that the pain was normal and I should accept it – and I, being young and less assertive than I am now, trusted that they must be right. One day I read an article about the condition in a magazine, whilst curled up on the sofa in acute pain. All my symptoms were there, and I felt a mixture of relief at recognising my condition, and anger that no doctor had ever mentioned it to me. I told a friend about the article later, and she told me to go back to my GP and insist on a referral to leading local obstetrician/gynaecologist Jim Dornan. (If that name is familiar, yes: he is the father of Mr Fifty Shades. Prof. Dornan is famous for a brilliant career helping countless families through their pregnancies and births – I highly recommend his book An Everyday Miracle* for some incredible stories of beating the odds.)
This is where my experience differed from many other sufferers of the condition; I had private healthcare through a workplace scheme, for which I am very grateful. Empowered by my friend’s advice, I went back to the latest unsympathetic doctor, showed her the article, and asked her to write a referral letter. She seemed more annoyed at my return than supportive of my discovery, but made the referral, and some while later I was booked in for an endoscopy – a keyhole surgery allowing the surgeon to see into internal organs. When I came around from the general anaesthetic, Prof. Dornan came to see me and told me that, since I was having a period at the time of the surgery, they’d been able to see the endometriosis ‘in action’. The cells were being deposited into my fallopian tubes, and had caused scar tissue which had partially blocked them. However, he told me that they’d caught it in time – “so don’t worry, you can have lots of tiny Dempseys running around one day!” As it turns out, children aren’t on our agenda, but for many women of course they are, and late detection can seriously affect or ruin fertility chances.
Diagnosis was a relief; the next step was treatment. Since the endometrial cells thicken and bleed even in their abnormal locations, treatment was based around stopping periods altogether. The first option was the contraceptive pill, taken without a break. Prof. Dornan explained that women had much fewer periods in the past, entering puberty later, having children younger, and having more children – so it’s not as unnatural as people think to skip periods by taking fewer breaks. The ‘week off’ the pill (packs contain three weeks’ worth, not four, for the month) was built in to make the medication seem more natural by mimicking a normal cycle, he said, rather than being necessary for health reasons. He advised that taking a break once or twice a year should be enough, and that if I did start a period (through missing a pill or taking it late, or through a stomach upset) that I should just let it run its course and then start back on the pill again.
I was prescribed the well-known brand Microgynon, which in my case led to mood swings and even depression; I remember a boyfriend at the time coming into the kitchen and finding me curled up on the floor in floods of tears. When he asked what was wrong, I could only say I didn’t know – I felt horrendously miserable and didn’t know why. So, I was then switched to the Implanon – a matchstick-sized rod surgically inserted into my underarm, releasing a steady dose of progestin to prevent ovulation. I’d been warned that whilst for some women, periods stopped altogether with Implanon, for others, they’d become less frequent, and for others, it might even cause longer periods. I fell into this last, unlucky category, so a few months later, out it came.
Next up, was the Mirena coil (an intrauterine system, IUS), a small, plastic, T-shaped device inserted into the womb. It releases a progestogen-like hormone, making fertilisation less likely. In some women, the Mirena prevents the ovaries from releasing eggs in the first place. Again, I was told that for some, periods would stop altogether, for some they’d get shorter and lighter, and for some they’d get worse. I started getting periods that lasted two weeks at a time, giving me a hellish cycle of two weeks of painful bleeding, two weeks off, and repeat.
I was finally switched back to the pill; Femodene this time. That’s the solution that finally worked and continues to work for me, though if I have a mild illness it can stop the pill working and then the period/pain is back. It’s nowhere near as bad as some others’ though; mine is moderate, not severe. Update Dec 5th 2017: I stopped taking the pill this year to see if I could manage without taking daily medication for the condition. My periods have settled into a reguar cycle and whilst the pain is still there, it seems less intense and shorter-lasting. Of course, there is still the risk of scarring and tube blockage, so I will continue to monitor the pain (I’ve started using the Flo app on my iPhone; there are others) and will consider returning to the pill if need be in future. My partner and I still don’t want kids – and if we change our minds in future, we’d prefer to give a home to existing children through fostering or adoption. So I’m okay with the risks around fertility. Again, these are personal decisions that each woman must consider for herself.
When I posted about the condition on Facebook a couple of years ago, I got a huge response from sufferers. For some, hormonal treatment like the pill or Mirena had worked; others had had surgeries to remove the tissue. Some had been diagnosed too late and had become infertile, one had had a hysterectomy. Early detection can prevent this for many sufferers, so please help spread awareness of the condition, and if you think you might have it, talk to your doctor and start your own research. The Endometriosis Association of Ireland is holding an Annual Information Day on Saturday 12th March in the Hilton Dublin Airport Hotel – see endometriosis.ie for details. In the UK, you can sign this Change.org petition by Endometriosis UK, asking David Cameron to take the condition seriously and work towards speeding up diagnosis and improving education of the condition amongst healthcare practitioners.
Check out global resource site endometriosis.org and the World Endometriosis Society’s site for information and latest research, and consider finding and joining a support group, either locally or online. Many sufferers don’t talk about the disease much to the people in their lives, held back by the ‘hidden’ nature of the condition and the lack of information about it. Finding others managing the condition can be a great source of emotional and practical support.
The following short video explains the condition – share it with anyone you’d like to understand it better (including the general public):
Finding the right doctor
If you feel you’re not getting the support you need from your medical professional, speak up. GPs often work under stressful, restrictive conditions, seeing high numbers of patients about various health issues in very short appointment slots. (Ask for a double appointment if you have something complex to discuss.) If you still aren’t getting the support you need, make a complaint, ask for a referral or switch doctors. Don’t let worry about offending your doctor trump your medical needs.
As always, all praise and gratitude as always to hard-working health professionals and health campaigners everywhere who are making a difference.
[This article was originally written for my wellbeing column in the Irish Sunday Mirror, in March 2015]
1Rogers PA, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.
2Nnoaham et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011;96(2):366-373
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