This post has been a long-time in the works. With all that I have learned about this disease through experience, reading medical journals and textbooks, I've been growing more and more disturbed (or is it irritated?) by the increase in those that promote a "cure" for this disease.
If I flash-back to when at 23 years of age I finally had a name to call my experience, I had just dove into finding everything I could out about the disease. Along my journey from doctor after doctor, I became even more desperate, and would have likely grabbed out for anything that offered an ounce of relief from the constant pain. I don't think that my feelings of desperation back then vary all that much from the majority of those who also live with this disease. I also don't believe that these feelings are at all irrational. Who wants to live with a disease that causes pain, financial distress, social isolation, and often effects our dreams for our own future? Who when at their absolutely wit's end with the treatments that their doctors are or in some cases, are not, offering wouldn't reach out to any hand that is offering to help?
Now that I've learned so much about endo from a variety of different sources, I'm more aware that often these hands that are reaching out to others may not be reaching out with the best of intentions. There are "agencies" or certain people out there who do in fact exploit the suffering that we go through, most often for their monetary gain.
The World Endometriosis Society's October Issue of their E-Journal featured a letter from the President of the Society on the topic of this form of exploitation. Professor Hans Evers, the President of the WES had come across a website that was blatantly promoting a cure for this disease, in this case through curing the candida albicans within the system. This approach, immunotherapy, has been reviewed within The Endometriosis's Association newer book on the disease; Endometriosis: The Complete Reference for Taking Charge of Your Health. The doctor on the website in question is not an endo specialist, not even an Ob/gyn, however claims that they can successfully treat this disease through the immune system approach.
Ok... Well yes, I do experience the lovely intestinal candida problems, there is no question. And when I avoid yeast and unnatural sugars while taking probiotics, it does not seem to affect me as badly. However, how can this person claim that the candida causes the endo in the first place? As Professor Hans also points out, there are only a handful of articles on the topic of endometriosis and candida, with no clear causal relationship being spoken of within the research. While there have been advances in identifying different genes and enzymes which might contribute to the disease formation, there still has been no cause found to date.
Without a cause for the disease, how can there be a cure? At the moment, the best "cure" appears to be excision surgery as it typically means a longer length of time between repeat surgeries. But even this is not a cure, as many of the women in my support group who have had endo excision surgery, have still gone on to have endo afterwards. The point is, if the process that creates the disease in the first place is still present after the surgeries and other therapies, than it would only make sense that there is a chance for it to return afterwards. Even if you remove the cells, the process that caused it to go haywire in the first place, may still lead towards it going haywire at a later time.
Many herbal companies who so freely advertise with their headlines of "Beat Endometriosis Naturally" or something along those lines, also prey on our desperation for their own profits. I have come across one such website which claims to have the cure in a magic herbal pill form, and suggests several times over again that research has revealed it's effectiveness. However, there were no direct hits on the various medical websites when looking for the name of the herbal concoction and the word 'endometriosis'. I myself had wrote to this manufacturer several times to request further information and did not receive any replies. My telephone calls also went unheard.
The third source of exploitation that has been nagging at me has been an individual who represents themselves as being part of a non-profit foundation which does not exist. This person has claimed to have found a pharmaceutical product that has cured them of the disease. However, in earlier e-mails, prior to this person somehow "forgetting" the facts, they had mentioned that after the "miracle treatment" within the repeated surgeries for supposedly only adhesions that there had in deed been "minor" endo cells found. Given my research into endo, I know that oftentimes even when there is only a handful of visible cells that there are typically more that are microscopic, invisible to the naked eye. There is a complete difference between being "cured" of the disease and still having minimal endo cells present. Endo cells are endo cells no matter how many or what size they might be.
All of these forms of exploitation are disgusting. We truly are a vulnerable population due to our illness(es) as Dr. Hans points out. I give major kudos to the World Endometriosis Society for highlighting this subject and doing their part to raise awareness. There will always be others that will try to take advantage of our situation, however with more awareness highlighting this area, hopefully not many more of us will have to be "victimized".