It can be hard to decipher what's true and helpful and what is false and spam in the endometriosis medical community, especially for those who have just been diagnosed. I think it's important to know as much information as possible upfront as it's something I wish I would have known.
ANYTHING that claims to be a cure for endometriosis is spam and should be ignored. Medical professionals have some theories about the cause of endometriosis, but as of right now they DO NOT know the direct cause of the disease even though there have been some theories ruled out. How can you have a cure for a disease when you don't know what causes it? If there was a cure for endometriosis, I along with at least 176 million people worldwide who suffer with it would be SCREAMING it from the roof tops! At the end of the day, anyone claiming to have a cure for endometriosis is only trying to take your money. They do not have your best interest at heart.
There are things that may help reduce inflammation and pain, but they will not cure endometriosis. Excision surgery is our best weapon against endometriosis as endometriosis specialists use this technique to cut the diseased tissue rather than burning it. Excision surgery has the highest success rate of all other treatment forms.
I checked my filtered folder on Facebook about a week ago, which I didn't know was a thing and saw this message. This in turn prompted this blog post in hopes that it would help you to decipher what's true about endometriosis and what's spam. This message was sent almost three years before my book was published. There are so many things wrong with this message. I'm glad I didn't know about this message on the date it was sent to me because it was sent six months after my excision surgery with an endometriosis specialist. Unfortunately, I don't know who sent this message or they would be getting an ear full.
Another form of spam that I feel like needs to be addressed is AbbVie/SpeakEndo/Lupron/Orilissa. I've seen ads that say something like "click here to find out more about a new drug for endometriosis" and when you click on it, it has something to do with AbbVie/SpeakEndo/Lupron/Orilissa. Personally, I think all of the information should be presented like the name of the drug and company before someone clicks on it. But they don't do that because they want to be deceitful. They want people to click on the ad and honestly, get their hopes up. Unfortunately, drug companies do not have the best intentions for those who suffer with endometriosis. It's about how much money they can make off of us. For one, there's not enough data to support that Orilissa is a new and improved drug for endometriosis as it wasn't studied long enough to gather all of the necessary data before the FDA approved. Two, AbbVie has lawsuits against them for how they have tried to get Lupron in patients' hands so what's to stop them from continuing to do the same with Abbvie when they can continue to profit?
Things like diet, supplementation, and exercise may help decrease pain and other symptoms, but they aren't going to diminish endometriosis implants.
We spend so much money on treatments and are extremely desperate to find something that will diminish or eradicate our pain. It's awful that there are people out there preying on us to make money rather than help, but it's our reality and something we have to be on the lookout for.
Have you ever received a message similar to mine? Have you ever been told something would cure you of endometriosis? Leave a comment below and let me know your thoughts.
I hope you find this information helpful.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.