Emma Bunton has it, Whoopi Goldberg was diagnosed with it, Lena Dunham has even written about her struggles with endometriosis in her memoir Not That Kind Of Girl. The actress said the pain felt like “someone had poured a drop of vinegar inside of me, followed by a sprinkle of baking soda. It bubbled and fizzed and went where it would.”
But what exactly is endometriosis? The condition is the presence of endometrial like tissue in the pelvis (and other areas). This tissue, while similar to the uterine lining, is not the same. It does appear to respond to hormonal stimulation. Endometriosis is often, extremely painful.
We had a chat with Kathleen King, Chairperson of the Endometriosis Association of Ireland, who has been living with the illness herself for 28 years. Here are 9 things you may not know about the condition that affects 1 in every 10 women in Ireland.
1) It is an invisible illness:
Endometriosis is not a well known condition. There are no outward signs that a woman is affected by it and while they may have appear to be fine outside, in reality this isn't always the case.
2) It can be worse than regular period symptoms:
Some women suffer extreme pain including severe cramps, chronic back pain and discomfort during sex. Ms. King stated:
They can be torn apart by severe pain, pain that is of peritoneal quality (like appendicitis). Women have described crushing uterine contractions, bowel issues, bladder problems and heavy bleeding, while holding on to their studies /work/family and social life. Women are tough, we tend to put the mask on and get on with it.
3) Diagnosis can be tricky:
While symptoms of endometriosis are not very specific and can be similar to other conditions like irritable bowel syndrome, symptoms can give a doctor a first clue towards diagnosis. A clinical examination can give doctors more information and for a definitive diagnosis, a laparoscopy (keyhole surgery) is needed.
Tia Mowry of Sister Sister fame has talked openly about her struggles with the condition.
4) Women of all ages can have it:
There are many misconceptions about the condition including that women need to be of a certain age to have it. Ms. King says each case is different. "For some women the symptoms develop with the first period, for some later. There are some women who do not experience painful symptoms at all, and may only discover they have endometriosis during infertility investigations. "
5) Daily care is important:
This involves being a good self manager. It is important to take medication as prescribed, like pain medication and hormonal medication and using techniques like pacing, mindfulness and self management. When coping with symptoms, some women use heat pads, TENS machines, magnesium cream and salts, hot baths, exercise and dietary changes.
6) There are different treatments you can try:
Birth control can relieve the symptoms as can injections that put the body into a temporary menopause. "All medical treatments come with side effects and are contraindicated in women who are trying to conceive," Ms. King says.
"Medical treatments do play a role in symptom management, and that's important for many women while they seek out a skilled and experienced team to excise (cut out) their endometriosis. Unfortunately, many women are subjected to repeated ineffective surgeries that can lead to chronic pain and destruction of ovarian reserve (fertility)."
7) There is no cure:
There is no quick fix for Endometriosis. Pregnancy, menopause or a hysterectomy will not cure it. While pregnancy or medical treatment can relieve symptoms, they are not a cure.
8) Women with endometriosis can still conceive:
While endometriosis is a leading cause of infertility, it's important to remember that up to 70% of women with the condition will conceive. This figure may be higher with assisted reproductive techniques such as IVF.
9) The cause of the condition is unknown:
This can be frustrating for women because although there are several theories, there are no definitive answers. The most accepted theory is that during a period, the womb lining doesn't leave the body properly and embeds itself on the organs of the pelvis causing severe pain, something that is called 'retrograde menstruation.'