Dear Mr. Hodgson,
I am writing to you today in hopes of helping to raise awareness of the need for increased research into women’s health issues. Specifically, I would like to address the disease known as endometriosis because as a woman, who suffers from endometriosis, I feel that the health services offered are not adequate.
As you may not know what endometriosis is I will tell you a bit about it. Endometriosis affects at least 5.5 million women in Canada and the United States. It is not fatal but it certainly can bring a lot of grief and suffering, both emotional as well as physical. Endometriosis is a gynaecological condition that affects women of any age, race or class. It is when tissue similar to the endometrium – womb lining – is found outside of the uterus. This ectopic tissue responds to normal hormonal surges, to grow or shed, but the blood generated has nowhere to go, so causes pain, inflammation, and adhesions. Endo can grow anywhere in the body except on the spleen. Some of the more common symptoms include but are not limited to:
-> PAIN which can be experienced before or during menstrual periods or continuously throughout the month; the pain can be a typical low pelvic cramping, pain with sexual intercourse, with bowel movements, merely with movement, at rest; pain can be diverse depending on the location of the endometrial growth.
->INFERTILITY. Many women have great difficulty conceiving and indeed may never become pregnant despite invasive, risky and expensive medical procedures and treatments. In some cases, OHIP does not cover IVF and other procedures.
-> BOWEL/BLADDER COMPLICATIONS. Diarrhoea, constipation, rectal pain or pain with bowel movements, symptoms of bowel obstruction or pain with voiding may occur – it has sometimes been mistaken for appendicitis.
->HEAVY OR IRREGULAR BLEEDING.
->FATIGUE, LOW ENERGY, DIZZINESS, HEADACHES.
-> LOW RESISTANCE TO INFECTION.
-> NAUSEA, ABDOMINAL BLOATING.
-> LOW GRADE FEVER.
-> ANGER/FRUSTRATION with chronic disease, missed time at work, decreased energy for home/family life
I have suffered from this disease since my periods began and will continue to suffer for the rest of my life, as there is no cure.
Doctors who treat the disease are almost impossible to find without calling several ob/gyns who might know something about it. According to the woman that I spoke to at the College of Medical Doctors and Surgeons – endometriosis isn’t a specialisation; it’s a hobby. Doctors and the general public are misinformed about the disease, which is very unfortunate as many women suffer since puberty. I have included a letter and a brochure, which may help you to understand the disease and what the many women who suffer from it go through every day.
On July 29th, I called Telehealth because I was in a lot of pain and both my family doctor and my specialist are on holidays. The woman I spoke to, although polite, had very little knowledge about endometriosis and the knowledge she did have was wrong. When I told her that I had been diagnosed with endometriosis on my ureter she told me that this was not possible, as endometriosis did not occur anywhere but in the uterus. This is of course not true, and I told her so. Endometriosis can occur anywhere in the body; there have even been cases of it occurring in the nasal cavity. After I told her that I was experiencing pain from my endometriosis – but never the pain I was currently experiencing and calling about, she said that I could not be suffering from endometriosis pain as I did not have my period. This is also not true, as pain caused by endometriosis can occur at any point in time. Like myself, many of the women who have endometriosis suffer from pain 24/7.
Many women become very frustrated, angry and upset after visiting doctor after doctor who just tell them that experiencing crippling pain every month or constantly or having pain during intercourse, is “normal” and to “live with it” or “all women have a bit of pain during their period”. We are not being heard and our doctors/health care system, do not care that we suffer a great deal of pain and cannot lead a fulfilling life.
The treatment options for endometriosis vary from surgical castration (removal of uterus, tubes and ovaries) with the risks associated with a major surgery, the potential of complications of instant menopause like osteoporosis, heart disease and depression, to medical options such as danazol (a synthetic male hormone) which may cause irreversible side effects such as facial hair, deepening of the voice, acne and clitoral enlargement among others. Most women end up having to use high doses of painkillers every single day of their lives just so that they may get out of bed and try to have a normal life.
This disease can make a woman infertile or even cause her to never be able to bring a baby to full term. It is often hard for a woman who suffers from endometriosis to work full time, or even take care of her family, if she is one of the lucky ones to have one, and do simple chores around the house. It sometimes makes a woman feel very un-woman like at all.
It is about time there was more awareness of the disease and that all women who have either already been diagnosed or awaiting diagnosis, were given better care. Being fobbed off by doctors repeatedly saying it’s normal is unacceptable.
A list of Doctors who treat endometriosis should be made available to women, and their general practitioners, who have the disease or need to be diagnosed. More public awareness is needed, as there are many myths that need to be dispelled.
I would like to hear from you in writing regarding this issue. If you would like further information please don’t hesitate to contact me, or contact the Endometriosis Association (8585 N. 76th Place, Milwaukee, Wisconsin 53223; 1-800-992-3636).