Endometriosis UK trustee, Carol Pearson spoke at TED Brighton about Endometriosis. An engaging, honest and funny speaker, Carol told how her long history of endometriosis cost her her marriage, her career and her fertility.
The cause of endometriosis is unknown, though there are many theories and while a cure doesn’t exist the most effective treatment is what Carol describes as a “complete castration” i.e. a total hysterectomy.
She makes the point that if men had a condition that caused painful sex and had castration as the best treatment, there would most definitely be a flurry of research and very likely a cure!
However, as it stands, painful periods, painful sex and the frequent bowel issues caused by endometriosis ensure that is stays a taboo and largely under-discussed topic.
What is Endometriosis?
In Endometriosis tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus. This tissue is influenced by oestrogen and swells and bleeds during a woman’s period.
As these “mini-periods” are taking place outside the womb, the blood has nowhere to go and instead spills onto whatever area is nearest thereby bringing on a chronic inflammatory reaction that may result in pain and the formation of scar tissue.
Endometriosis usually occurs in the pelvic cavity. The pelvic cavity contains the pelvic organs, namely: uterus, fallopian tubes, ovaries, vagina, bladder, ureters, the cup de sac, pouch of douglas and rectum. Within the pelvic cavity a layer of tissue called the peritoneum covers these organs and the walls of the pelvic cavity.
When a woman has endometriosis, it generally means that the endometrial cells have implanted within the peritoneum and /or have penetrated into the walls of the pelvic organs.
While endometriosis is mainly found in the pelvic area, on the pelvic peritoneum, ovaries, in the recto-vaginal septum, on the bladder, in the pouch of douglas and bowel, there have been rare cases where it has been found on the diaphragm and in the lungs.
- painful periods,
- painful ovulation,
- pain during or after sexual intercourse,
- abnormal bleeding,
- rectal bleeding
- chronic pelvic pain
- severe rectal pain during periods
- impact on general physical, mental, and social well being
As average time from reporting of symptoms to diagnosis is 7 years, this can lead to a “normalisation” of symptoms which can further impact timely and accurate diagnosis and treatment.
Painful periods means pain-full!! This is not a cramp or mild irritation. The pain can be intense, nauseating and extreme. To make matters worse, depending on where the endometriosis is, going to the bathroom during period time can cause even more pain, particularly for bowel movements, which can also be accompanied by bleeding. Many sufferers also experience referred pain in the legs, lower back and elsewhere.
There is no known cure.
There are drugs that can treat endometriosis but most are not suitable for long-term use due to side-effects.
Surgery can be effective to remove endometriosis lesions and scar tissue, but success rates are dependent on the extent of disease and surgical skill.
Pregnancy may relieve symptoms but is not a cure for the disease.
Hysterectomy, plus removal of the ovaries and surgical removal of all the disease at the same time increases the chances of pain relief and reduces the likelihood of recurrence but this option means an immediate surgical menopause and no future use of HRT, as to do so would introduce oestrogen to the system again.
Endometriosis affects an estimated 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49), which is approximately 176 million women in the world. It can begin with the first period and while menopause can alleviate the condition as oestrogen levels fall, in some women with scar tissue or adhesions from the disease and/or surgery to manage the disease, symptoms can still continue.
The Global Study of Women’s Health (GSWH) found that Endometriosis accounts for a significant loss of productivity of 11 hours per woman per week.
The study also 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 reduced.
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