My name is Karen Howell and I am 26 years old and I work at Southern Cross University as a Videoconferencing Manager. I have been diagnosed with Endometriosis for 7 years and like so many other sufferers, I am sure I also had the disease as a teenager. I am heavily involved with an international campaign to promote Endometriosis and have been asked to speak about Endometriosis and the campaign.
What Is Endometriosis?
By now you are probably still trying to pronounce Endometriosis. :-) It is pronounced EN-DOUGH-MEET-RI-OSIS and sufferers usually shorten it to Endo for obvious reasons. Endo is an incurable, chronic disease that can affect any woman in her menstruating years.
The disease occurs when the lining of the uterus, called endometrial cells, appears in areas outside of the uterus. The cells become attached to any tissue or organ within the body but mostly appears on the organs around the uterus. It can take the form of microscopic cells, cysts or adhesions - sticky masses that virtually bind organs together.
There are a number of theories around but no definite answers. Endo is not a transmitted disease. Some researchers are looking at a hereditary link, but doctors honestly do not know why some women get Endo and others do not. The most common theory is 'retrograde menstruation' when some of the blood flow with a period moves backwards instead of forwards.
Therefore it is contained around the uterus instead of being expelled from the uterus. A very popular theory that is being researched at the moment is examining whether it is an immune deficiency disease or an environmental disease from the use of chemicals such as dioxin.
Endo can only be diagnosed through an operation called a laparoscopy. It cannot be diagnosed through ultrasounds, blood tests or any other kind of test. The endometrial cells, cysts or adhesions have to be sighted by a gynaecologist in order to receive any kind of treatment for the disease. Diagnosis usually takes 5 to 8 years due to the fact that the disease is so cunning and so many doctors dismiss period complaints as 'women's problems'.
The symptoms vary greatly in each woman but they are usually worse at period time. Some women have no symptoms and it is only when they have difficulties in conceiving that they discover that they have Endo. The pain associated with Endo has been described as a dull ache or sharp and throbbing. Quite simply every woman suffers from a combination of symptoms to different degrees. Below are some of the most common symptoms of the disease:
- Painful intercourse
- Bowel problems (Endo is often misdiagnosed as Irritable Bowel Syndrome)
- Severe period cramping
- Heavy bleeding
- Ovulation pain
- Back/hip/thigh cramping
- Infertility problems
- Nausea
- Mood swings/depression
- Tiredness
Endo can only be treated through hormone treatments and surgery. The side-effects of hormone treatments can sometimes be worse than the disease itself. Surgery can remove the Endometriosis for a period of time but it has a 50% chance of returning within one year of surgery.
Many women are finding success in alleviating the pain associated with the disease by using alternative medicines such as acupuncture. Other women find that making dietary changes and/or increasing non-impact exercise can also help.
It used to be called the Career Woman's Disease due to women delaying childbirth to their later years. Many doctors advise patients that having a baby will make the disease disappear. The theory behind this advice is that pregnancy halts menstruation and therefore the Endo sometimes dies and does not return. Women have had children only to find that the disease returns, sometimes years later. Many patients are informed that a total hysterectomy will remove the disease. There are documented cases where women developed Endometriosis for the first time after a total hysterectomy. Pregnancy and hysterectomy are NOT guaranteed cures.
The Victorian Endometriosis Association offers phone support and literature and a quarterly newsletter. Their contact details are at the bottom of this article. I highly recommend a great book that has been published by the Association is called 'Explaining Endometriosis'.
When I was first diagnosed there was little information publicly available about Endo. My career for the past few years has centered around the internet and lately I have been continually surprised at the large amount of information that is now available about our disease on the net.
The best online resource I have found is a mailing list called Witsendo. There are over 800 sufferers connected to this list worldwide and it is a great way to gain support form other sufferers. A great sense of rapport has developed with the list members because sometimes you just need to talk to another sufferer about symptoms or emotions.
If you have read this article and think that you may have Endo there are a number of options available to you. Firstly, contact a GP and discuss the problem with him/her. If they do not treat your request for assistance seriously, find another doctor. I changed doctors ten times before I was finally diagnosed. You need a referral from your GP to make an appointment with a gynaecologist. If you live outside of the metropolitan area it can sometimes take weeks to get a first appointment with a gyno, so do not delay in making this appointment.
A couple of months ago I was reading a particularly sad email about a doctor that recommended pregnancy or a total hysterectomy to a 20 year girl, without a partner, to cure her of Endo!! Thankfully she had asked the group for advice, which immediately flowed in, but it angered me that such gross misinformation could still be circulated, especially to younger women.
I emailed the group suggesting that we start discussing concepts to make the disease more easily understood by the general public and to banish some of the common misconceptions that people have about Endo. That email drew a huge response. All sufferers are tired of having to explain and defend the disease no matter where they live in the world.
The first stage of the campaign is a letter writing appeal to various media organisations, personalties and politicians. We are hoping to promote more articles and shows about the disease. In a fairly unique endeavour, the Witsendo group has planned the campaign and gathered a list of campaign and gathered a list of contact details completely online.
The next stage of the campaign is still being planned, but we are anxious to find methods of increasing funding for research towards better treatments and/or a cure for Endo. We are also interested in promoting more information about the disease in doctor surgeries and within high schools so that teenagers are better educated about painful periods.For further information on Entometriosis link to theEndometriosis Campaign- or please feel free to email me directly at khowell@scu.edu.au
The Victorian Endometriosis Association can be contacted by mail at:
37 Andrew Crescent,
SOUTH CROYDON,
VICTORIA, 3136
Telephone: (in Australia) 03 870 0536
Fax: 03 870 3007
See also
- Gift to Kali ~ Kristina's contribution to the yOni circle pages is the story of a past life memory that has helped her in her struggle with endometreosis.
