The women who are aiming to stop endometriosis controlling your life
The leading gynaecologist Dr Iris Orbuch and pelvic pain expert Amy Stein have co-authored a new book called Beating Endo. Lisa Salmon finds out more
Around one in 10 women live with the painful condition endometriosis, where cells similar to those lining the womb grow elsewhere in the body.
Despite being relatively common, the condition is notoriously poorly understood and many women go undiagnosed for years, although a number of celebrities - including Lena Dunham, Alexa Chung, Julia Bradbury, Whoopi Goldberg and Daisy Ridley - have helped improve awareness in recent years by talking about their own experiences of it.
As the cells associated with endometriosis grow, often starting in infancy, they react to the monthly menstrual cycle and bleed, causing inflammation, pain and the formation of scar tissue - which can lead to further problems and more severe and chronic pain.
There's no cure, although treatments including painkillers, hormone treatment and sometimes surgery can help.
Gynaecologist and surgeon Dr Iris Orbuch, who's just co-written the book Beating Endo, explains that this process ignites what can become a steady accumulation of symptoms, "ranging from the uncomfortable to the unbearable, from the inconvenient to the life-limiting".
"For far too many of the estimated 176 million women and girls worldwide so affected, dealing with this persistently misdiagnosed affliction has meant failed treatments, too many painkillers, being told it's 'in your head', or defaulting to the painful conclusion that it's just something you have to live with," she says. "It isn't."
In Beating Endo, Orbuch and her co-author, physical therapist and pelvic pain specialist Amy Stein, describe ways to not just overcome the disease's effects but break its hold on your life, through a 'multimodal' programme.
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Multimodal is essential, say the authors, because years of misdiagnosis lead to a spiral of co-conditions that need to be identified and treated as well. They call it a 'misdiagnosis roulette', with an average of 12 years between the onset of symptoms and a correct endometriosis diagnosis, and insist no female should have to live with such all-consuming pain.
"No woman or girl should have her life put on hold, her personal relationships broken, her career stunted by a disease we know can be dealt with," declares Stein.
Here, they outline five ways to deal with the effects of endometriosis and reclaim your life...
1. Know what you're up against
It's essential to understand precisely what the disease process of endometriosis is and what it can do to your body. Like all cells, endo cells grow and expand, aided and abetted by the monthly hormonal stimulation occurring in every female body - but not flushing out of the body via menstruation.
The cells thicken, increase their blood supply, and spread, adhering to whatever organ is nearby: the bladder, the bowel, the ovaries. And typically, when something seems wrong with, for example, your bladder, you see a urologist and probably get a diagnosis that's incomplete at best and a treatment that doesn't solve the issue.
Meanwhile, as the impact of the disease multiplies, the central nervous system becomes sensitised to all the messages of pain it receives. This upregulation of the central nervous system (CNS) ignites new pain elsewhere, branching out via the spinal cord to more organs, muscles and nerves, until the whole body can feel, as patients say, 'on fire'.
This is why, before Orbuch agrees to do the excision surgery that's the cornerstone of endometriosis treatment, she requires that the patient "cool the CNS".
"You're up against a disease that is chronic, systemic, and complex. But with changes in behaviour and lifestyle, you have it in your power to beat it," she stresses.
2. The right physical therapy and basic exercise
As endo cells distort the organs of the body's core, the muscles and nerves underlying the organs are also distorted. That hurts, and the body tenses against the pain.
Over time, the tensing makes the muscles less flexible, makes you less stable, gives less protection to the organs, and adversely affects your skeletal structure. To reverse that process, the right physical therapy is essential, requiring highly advanced training in addressing the body's pelvic floor.
Finding a good physical therapist is essential, but until you do, a number of basic therapeutic exercises - dubbed 'The Basic Six' by the authors - can be performed to ease the muscles.
They include slow, deep breathing, a pelvic floor drop where you release the pelvic muscles as when urinating, a pelvic floor stretch, where the pelvic floor is dropped while squatting or lying down with knees to the chest and feet together, a hip rotator stretch where you lie with knees bent and one foot on the opposite thigh which is lifted and pulled gently towards you, a hip flexor stretch which is a gentle lunge and hold, and an abdominal stretch, where you lie on your stomach with hands flat next to your shoulders, exhale and slowly push your upper body up with both hands and hold briefly.
Women with endometriosis, they believe, need to transition towards an anti-inflammatory diet, which is as organic as possible.
"If you have endo," says Orbuch, "you already have inflammation, which irritates your gut and heats up the central nervous system. Stop adding to this inflammation as much as you can by giving up dairy, gluten, soy, and sugar."
4. Taking care with your environment
A huge number of synthetic chemical substances used in household products and standard objects qualify as endocrine disruptors, which, since it's believed they can mess with your hormones, may contribute to intensifying endometriosis pain.
Orbuch and Stein say that can mean beauty products, household cleaning products, even objects as theoretically inoffensive as thermal paper receipts.
Pain happens in the brain, and contemporary research increasingly shows the brain's ability to disarm the mechanisms that make it happen.
A range of mindfulness practices work - from meditation to yoga, table tennis to snowboarding, plus self-talk to walking the dog. Whether as essential preparation for surgery or as a permanent lifetime habit, mindfulness cools the CNS and lets the mind restore and even repair the body.
Beating Endo by Dr Iris Orbuch and Amy Stein is published by Thorsons, price £14.99