Endometriosis Awareness Week
So today is the last day of Endometriosis awareness week and March is Endometriosis month so in the spirit of awareness raising and such...
What is Endometriosis?
Endometriosis (pronounced end - oh – mee – tree – oh – sis) is a disease that is thought to affect one in ten females of child bearing age. Although it is not a killer disease it is a chronic condition with no known cure and as yet no known cause.
Endometriosis occurs when endometrium, the tissue which lines the uterus, is found growing elsewhere in the body. Most commonly the tissue is found on the ovaries, the abdomen, fallopian tubes, ligaments that support the uterus; the pouch of Douglas, the bladder and bowel and elsewhere in the pelvic cavity although in some cases endometriosis is found on other major organs such as the lungs. The result of this is internal bleeding, swelling, cysts and the formation of scar tissue and adhesions which can be so serious that organs actually become ''glued'' together.
Symptoms
The symptoms of Endometriosis vary from person to person but usually include painful periods, severe abdominal pain during any time of the month, gastrointestinal problems, extreme fatigue, painful sex, sub fertility or infertility and increased PMS symptoms such as depression, weight gain, sleeplessness, hot flashes, forgetfulness, aggressiveness, migraines and nausea. The pain caused by endometriosis not only occurs in the pelvic region or where there are adhesions, it can also cause radiating pain in joints throughout the body.
As well as the symptoms of endo women with the disease often have other chronic conditions such as polycystic ovary syndrome, CFIDS and autoimmune disease such as Hashimotos, Lupus or Fibromyalgia.
Diagnosis and Treatment
The only way endo can be diagnosed is through a surgical procedure called laparoscopy. Unfortunately as not much is known about the disease a huge number of women are misdiagnosed or even worse told that debilitating pain is ''normal'' and should be accepted as part of being a woman.
Once the disease is diagnosed there are various treatments on offer none of which offer a cure but which can sometimes alleviate symptoms. The most common courses of treatment are hormone based such as birth control pills, progesterone based treatments (Depo-Provera), hormonal IUD (Mirena Coil), GnRH Analogues (Lupron and Synarel) and testosterone treatment. All of these treatments only help alleviate some symptoms in some women and most have risks and side effects. GnRH treatments such as Lupron are currently being investigated over fears they cause brain damage and neurological problems however doctors throughout the UK continue to prescribe them without warning women of the dangers. These drugs also cause menopause like symptoms. None of the treatments mentioned can be used for a prolonged length of time and even when endometriosis responds to treatment it usually reoccurs when treatment is stopped.
Some surgical treatments are available for endometriosis such as removal of endometrial tissue via laparoscopy or laporectomy, endometrial ablation, tubal ligation (none of which have been proven effective and have a high recurrence rate after surgery) and partial or full hysterectomy (endometriosis has been known to recur after hysterectomy). Because many of these surgeries result in infertility doctors will not recommend them for pre-menopausal women or women without children. Surgery also carries risks of secondary infections and some surgery requires follow-up treatment such as HRT.
Understanding of the disease.
Aside from the pain one of the most frustrating things about endo is the lack of understanding of the disease amongst the medical profession and the general public. Many doctors ignore the detrimental effect of endometriosis on a woman’s quality of life and instead pursue a course of treatment based only on fertility which for women not interested in raising a family can be extremely difficult. In some respects women are at the mercy of the medical profession as few doctors or gynecologists fully understand this disease and its implications. The harmful effects of hormone treatment are often not mentioned and many doctors still believe that the symptoms of endometriosis are psychological or that women are exaggerating the pain they describe for sympathy or attention.
Because there are often no outward signs of endometriosis as with many chronic pain conditions sufferers often encounter skepticism. ''Well you don't look sick'' is a common response from people and coping with people who don't believe you are ill can be worse than the physical symptoms at times. Sometimes endometriosis suffers feel that it would be easier to have a cast or a cane or some outward sign of their illness to help people better understand that they are in pain.
How you can help.
One of the most important things you can do to help anyone with any chronic pain condition is to educate yourself and to be sympathetic and understanding. Appreciate that the person is not always able to do the things everybody else can and understand how their condition limits their energy and their ability to be involved in certain activities. If they tell you they are in pain please believe them even though there may be no external signs that this is the case. Remember that for chronic conditions there is no cure and that most people will have their condition for their whole life. Please understand that they may not want to tell you everything about their condition as the symptoms can sometimes be upsetting or embarrassing.
There are a lot of charities out there for chronic pain conditions. Please look into them before donating as a lot of them support vivisection or are funded by large pharmaceutical companies.
Further information.
Endometriosis UK
SHE Trust UK
Wikipedia
The top two links are for information only, Endometriosis UK are funded by Proctor and Gamble and SHE Trust UK have no clear anti vivisection policy so I do not actively support these organisations.
Thank you to anyone who read all of that.
