This topic was brought to my attention by a lady who just signs herself as "M". She sent a comment to one of my posts here and asked me to share this with those who read this blog. I have done a copy and paste of the post she made about Endometrosis which can be a disabling as well as very painful disease for women. It is Endo Awareness Month. You can contact her at cottoncandypink.blogspot.com.
Thursday, March 15, 2007
March is endometriosis awareness month. I don't write on here often or in much detail about my struggle with endometriosis, but I do want to take this opportunity to bring attention to this disease at least among those who read my blog.
Unfortunately, few people are even aware of endometriosis and fewer still have a real grasp of what it, what it does, and what it can do. Sadly, those who are assigned to treat the illness are almost always among those with a weak understanding of it. Since endo manifests itself differently in each patient, even those who do have some awareness of it often tend to view the illness in terms of its symptoms in the patient(s) they happen to know. But endo can affect its victims in many ways, from simply being present but causing no noticeable symptoms, to causing infertility but nothing more, to causing disabling pain and other serious symptoms. Similarly, treatment varies based on the patient's symptoms, and no one approach works for everyone. Even worse, there is no cure for this chronic illness and though some do manage to experience relief from it, many suffer from the symptoms for a lifetime.
Endometriosis is basically a series of growths that grow inside the body, usually in the pelvis. In some cases, the lesions actually travel out of the pelvis and into other body parts, such as a leg, the lungs, an eye, etc. The lesions often cause pain (some don't), especially if they are on sensitive areas such as nerves, ovaries, etc. They are often surgically removed, but because this is a chronic condition, very often they grow back, thus making surgically fairly useless. Oftentimes, as has happened with me, surgery (or even the endo itself) causes adhesions to grow inside the body. Adhesions are scar tissue that stick like gum and pull on the areas they are stuck to like a rubber band. If adhesions occur on sensitive areas, such as an ovary, they can be quite painful. Imagine a rubber band sticking to your ovary and pulling on it as hard as it can. It hurts!
Often symptoms of endometriosis are progressive. They usually begin as abnormally painful periods in adolescence (the kind that keeps in you in bed for days and require prescribed narcotics, not the kind that is uncomfortable or treated with Motrin or Advil) and often evolve to daily pain over time. The hormonal and surgical treatments regularly used to treat the symptoms of endo frequently cause further problems and in many cases do not control the symptoms.
Recently, studies have shown that endometriosis is more than the gynecological illness it's been thought to be. Immune connections have been shown and it is thought that endo acts like an autoimmune illness (where the body's immune system attacks itself) and those who suffer from endometriosis often suffer from immune disorder symptoms (such as joint pain, recurrent infections, chronic fatigue, etc.) as well.
Depending on where the lesions grow, endo can become quite serious. Endo on the bladder, bowel, or other sensitive organs can lead to a lifetime of problems. Often bladder surgery or bowel surgery (which is risky) is required and some end up with catheters and colostomy bags. There is so much more I could write about endo, but my main point is: endo is much more than the strong menstrual cramps it is often thought to be.
It is not cured by birth control pills (though you may know someone who experienced relief from it through that method, it doesn't mean they are actually cured--symptom relief does not mean their endo lesions are gone or that pain relief will continue long-term--nor does it mean this method works for all endo patients; in fact, it doesn't work for most of us which is why we go on to get surgery after surgery and see doctor after doctor) or pregnancy (same qualifier as info contained in parentheses above). Endometriosis is not cured by hysterectomy, though that does give some sufferers relief. Hysterectomy can also cause further problems, and all surgery can cause painful adhesions, and many women do not experience relief from any surgery including hysterectomy. I am one of them.
Also, many are misinformed about endo because they think they know someone who had it or think they themselves had it but that it got cured by ____________ (fill in the blank). But often those who think they had endo are wrong. The disease cannot be diagnosed by symptoms only. Nor is it diagnosed by ultrasound, pelvic exam, or CT scan. The only way currently to diagnose it is through a pelvic surgery (usually a laparoscopy) and to send the lesions to a lab for analysis. Many who think they have endo or have been told they have it have never had a surgery to confirm the diagnosis. New diagnostic tests are being developed but currently surgery is the only known way to identify endo.
I have occasionally been contacted by others who have endo or who think they do. If you or someone you know has or might have endo, I recommend checking out the Endometriosis Association. The organization has chapters across the country and support groups in nearly every state. If there isn't one in your state you can contact the Endo Association about starting one of your own. I have an extensive history with this disease and have tried treatment after treatment, from Western medicine to "alternative" treatments, to lifestyle changes and diets, to numerous surgeries.
I don't have any answers on how to get better since I am no better myself after all these attempts (in fact, I am worse as time goes on), but I am able to share my experience and knowledge for those who might need it. I don't know everything, but I know a good amount, and I have plenty of personal experience that somebody else might be able to learn from.
Please don't hesitate to email me (It might take me a while to respond, but I will respond, just make sure to put something about endometriosis or this post in your subject line so I don't delete your email as spam. You can find my contact information is in the sidebar.) or comment if you have any questions.
For everyone else, please try to spread the word about this disease and encourage others to get educated about it and to support the people in their lives who might be suffering from endometriosis or other pelvic pain (such as that which is caused by adhesions) and need support. You can learn more through the Endo Association Web site (link above) and you may also order wristbands to support the Association and to help get the word out about this misunderstood disease. Thank you for reading.