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Endometriosis: so common, so painful and so ignored

Dr Sue Peacock

Endometriosis: so common, so painful and so ignored.

As it is International Women’s Day I thought I would focus on a medical condition which is often ignored or at least not taken seriously enough.

This is endometriosis. It’s astounding we do not hear more about it when as many as one in 10 women in the UK are suffering from the condition. Many doctors are still woefully ignorant of the condition and it is very hard to diagnose as the symptoms can be very different from woman to woman.

Endometriosis happens when cells from the womb enter the pelvic cavity, or other parts of the body, yet still behave like the cells in the womb. Like the cells in the womb they break down and cause bleeding as part of the menstrual cycle. Because they are not in the womb, the blood cannot leave the body and causes inflammation, scarring and pain.

Because the condition is not easily diagnosed, and it is still not taken seriously enough, the average time between women first seeing a doctor and getting a definite diagnosis is over seven years. There are some hopeful signs that this is changing and I would encourage you to see a doctor If you have very painful periods or suffer from pelvic pain.

Talking to your GP about Endometriosis

If you want some advice about how to talk to your doctor about endometriosis then this heartfelt story from one woman who suffers from the condition might help and this site provides a good basic checklist to take to your GP when you want to ask about endometriosis.

The most common symptoms are chronic /persistent pain, fatigue and lack of energy

This can then lead on to other problems which can be very damaging to a happy and fulfilled life. So, depression and isolation are common, sex can often be painful so this can have an effect on relationships. The condition can affect fertility and of course this brings its own problems. For many women the pain is severe enough to affect their working lives, with many tuning down promotions, having to take time off sick and even being forced to leave work. All these can be side effects of endometriosis. In short many women’s lives are being ruined by this condition which is ill-understood and is not curable at present.

There is a very good website from the organisation Endometriosis UK which will give you lots of information and sources of support. If you are wondering if you have endometriosis, I would advise you to take a look at this site, understanding how the condition works is a very important starting point to getting help and helping yourself.

Myths around Endometriosis

Of course, understanding and information help with many medical conditions, but I think it is especially important with endometriosis as there are so many myths about it. Some of these myths are not only wrong, they can cause harmful feelings of guilt or a belief that it is your fault. A common one is about pregnancy, it is still often said that endometriosis only affects women who have not become pregnant, ‘you would not have endometriosis if you had got pregnant in your 20s’ is still something which my clients have told me was said to them.  This is not true, and its corollary, that getting pregnant stops the condition is also untrue. The truth is no one knows what causes endometriosis, there may be a genetic basis, and it does seem that women with one or more close female relatives who have had the condition are more likely to suffer from it. There has also been some, at the moment inconclusive, research to suggest that pollution in the air may play a role.

There are three main treatments at present: surgery, hormone treatment and pain management. The international site, endometriosis.org has a comprehensive rundown of treatments which are available which is worth a look.

The well-known writer and actor Lena Dunham has recently been in the news as she has had a total hysterectomy to end what she described as ‘years of chronic pain. Obviously, this is a radical solution and I would hope that many women can be helped to manage the pain and never have to take such a decision.

As there is currently no cure for endometriosis, often the emphasis is on managing the symptoms. This is what I want to talk about now.

I always like an encouraging story and I have been reading some of the excellent stories on the website Endometriosis UK. It heartened me to see that for many women, learning to manage what is often constant pain can be absolutely life transforming.

To take one example from the site, that of Lyndsey, who is the co-leader for the Edinburgh support group of Endometriosis UK. She says: “I’ve recently completed a chronic pain management course which has helped me learn techniques and strategies to help me deal with the pain. Now I am able to manage gentle exercises and stretching. Pacing myself, changing my diet and reducing stress have all had a positive effect . . .”

I would endorse all these things. Sometimes it can all sound a bit obvious, so I often find it is helpful to explain why pain management is worth a try, especially when it includes mind-changing techniques such as hypnosis for pain and NLP for pain.

Pain management for Endometriosis

When I see a client with endometriosis at my pain management clinics in Milton Keynes or Bedford, I start with stress reduction, often using hypnosis for pain. My thinking here is that if we can reduce stress it is very likely that pain will lessen, even if we do nothing else. This is not magic, it is based on the science of our minds and our bodies. If stress is reduced, our muscles relax and that eases pain, once you find that your pain can be reduced you will feel in more control, and that can both lift your mood and open up new possibilities for a good life with pain.

Once in some control of pain, gentle exercise becomes possible, and this can not only further control pain it can also lift mood and combat depression. It truly is a virtuous circle.

It can take some patience, and often you will need some support. As a start I would recommend you try my book Break the Pain Cycle in 28 Days. It offers a structured month-long programme to help you get in control of pain. Try it, you will feel better this time next month.