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Women's Health
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​What I Wish Everyone Knew About Endometriosis

Libby Hopton, M.A.
October 16, 2013
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October 16, 2013

Imagine a disease that takes about eight years to diagnose after visiting five different doctors. A disease that feels like you're going through labor, but which you have to endure every month (or for some unlucky women, every day). A disease that family members and doctors tend to brush aside as "just" menstrual cramps—or worse, suggest the pain is "all in her head." It's an invisible disease that few feel comfortable discussing; it can interfere with all aspects of life, and can lead to a loss of fertility.

Of the women I meet through my online support group, some endured pelvic pain for more than 20 years before finally receiving a correct diagnosis of endometriosis, and often that's only the first step. It can sometimes take years and multiple failed treatments before a woman finally receives the care she needs to relieve her of her pain.

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What is endometriosis?

Endometriosis is a disease that few have heard of yet it affects millions of women worldwide. It's observed when areas of tissue that are somewhat similar to the endometrium (the lining of the womb) are found in places outside the womb. The most common location is the peritoneum, a saran-like wrap which lines the pelvic cavity (the space that houses the uterus, ovaries, tubes, bladder and intestines).

This "rogue" tissue is stimulated by the body's hormones, and the immune system responds by producing inflammation and swelling, which can cause severe pain, scarring and adhesions (where organs and other structures in the pelvis stick together).

Endometriosis does not discriminate against age, career choice, or ethnic background.

An estimated 1 in 10 women have this disease and come from all walks of life. The cause is unknown, although there are theories in abundance, some more imaginative than others. What we do know is that:

  • Symptoms can affect women of all ages, despite prior pregnancy and even post-menopause.
  • The disease tends to run in families
  • The locations in which it's found follow specific patterns, suggesting a possible origin during development of the embryo. (In fact, one study examining the pelvises of 101 stillborn infant females reported endometriosis in just under 10%.)

Many believe this is an acquired disease, but evidence is growing in favor of a developmental origin, meaning that the disease is there all along, way before the onset of symptoms.

In any case, the puzzle is far from complete.

While this disease can cause severe pain, pain and the disease are not the same thing.

Some women have extensive disease, yet only mild symptoms, while others have minimal disease and crippling pain. Until now, we do not know how or why this is. Something we do know is that pelvic pain can have many origins, so solving one problem may not solve all aspects of the patient's pain.

Keyhole excision surgery to remove all areas of endometriosis is an effective treatment for many women, often resulting in long-lasting relief without recurrence. It is regarded as the "gold standard" of endometriosis treatment. Unfortunately, only a few surgeons around the world offer this surgery and have the skill to treat all forms of the disease, so not all patients are lucky enough to access effective surgery.

For those for whom excision surgery is not available or who have persistent pain despite surgery and other medical therapies, other lifestyle changes may help moderate symptoms and give the woman a sense of control over her situation.

Lifestyle changes can help manage the pain.

Many patients with endometriosis explore dietary changes, take part in support groups to share and gain emotional support, and explore various forms of relaxation and alternative therapies, such as yoga, massage, reiki, acupuncture and meditation. While the pain is very real and has a biological origin, the experience of pain and the ability to deal with it can often be moderated in various ways. Alternative therapies and lifestyle changes will not make the disease go away, but they may make living with this disease easier.

Reducing stress and improving overall mental and physical well-being help us to deal with life's trials and tribulations, including the burden of suffering from a debilitating and often chronic condition.

While in my case, surgical excision of the disease has brought about a vast improvement, when I previously suffered from pain I'd find that what helped the most was distraction, such as going for a rigorous run or a bike ride in the rain.

When the pain was at its worst, however, the best I could do was apply heat, try to relax, breathe deeply, and allow my mind to go some place else; a peaceful, tranquil, safe place as removed as possible from my immediate experience.

For women reading this who are experiencing pelvic pain: while this pain is common, it is not normal.

Often people mistakenly think that something so common must be normal. If your pain is interfering with your daily activities, seek the help of your doctor and be persistent until you get the help you need. You are not to blame for your pain and you are not alone in feeling the way you do. Women all around the world, from all walks of life are dealing with the same problem.

You can be your best advocate by taking the time to research your symptoms, keeping track of them in a pain diary, and finding the best care available to you. There are effective treatments for this disease and even in cases of severe endometriosis there is hope for help and relief.

Another way of taking back control of your situation is by exploring both medical and alternative therapies to achieve the best quality of life you can. Remember: it's your body and your decision as to which treatments you choose. You and your doctor are a team and should work together in deciding upon the best treatment for you.

Lastly, if you have the courage to do so, turn this experience into something positive by educating others (your friends, family, and physicians) about this misunderstood disease so that other girls and women need not suffer in silence and can live out their dreams.

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Libby Hopton, M.A.
Libby Hopton, M.A.

Libby Hopton, M.A., lives in the Netherlands and is currently completing a research Master's degree in clinical and cognitive neuroscience. Libby is fasincated by endometriosis, because it's a disease shrouded by misconception, confusion, controversy, and debate from an array of stakeholders with competing agendas. As a patient with severe endometriosis, Libby's quest for optimal treatment felt akin to navigating a minefield of inadequate surgery, ineffective medical therapy, and outright ignorance at the hands of the medical community. She hosts an online Facebook group called EndoMetropolis (a fun and educational hang-out for patients, researchers, and physicians) and an educational website,, co-developed with world specialist, Dr. David Redwine. She has also been involved in the development of the upcoming ESHRE guidelines for the diagnosis and treatment of endometriosis, a resource that aims to outline best practices for the management of the disease in Europe.