Chapter 39: Common Misdiagnoses

Reminder that I am not a doctor. If you think that you have endo, please see an endo specialist. Nancy's Endometriosis Nook on Facebook has a list of physicians with proven skill, knowledge and training in handling endometriosis cases.

Even though endometriosis is a relatively common condition (1 out of ten people with uteruses have it, which is 176 million people worldwide), it often takes 7-10 years for a patient to get a diagnosis. It took me 13 years to have my suspicions that I had endo confirmed by a doctor. This is especially disgusting if you consider that some doctors (my surgeon included) believe that you are born with endo and it activates upon menarche (the first occurrence of menstruation). That means a lot of women are needlessly suffering due to a lack of information about endo.

For a lot of endo patients, they receive many wrong diagnoses before they receive the correct one. Due to the fact that endo often impacts colon and bladder function and causes pelvic pain, common misdiagnoses for endo are: Appendicitis, Ovarian cysts, Bowel obstruction, Colon cancer, Crohn's disease, Diverticulitis, Ectopic pregnancy, Fibroids, Inflammatory bowel disease (IBS), Ovarian cancer, Pelvic inflammatory disease, Sexually transmitted infections, and Interstitial Cystitis. While these conditions can certainly happen in addition to endo, treating them alone often doesn't relieve all of the symptoms a patient is experiencing.

Why does this happen? Well, unfortunately endo is still an often misunderstood condition. A lot of physicians don't have comprehensive knowledge of the disease and the way that symtoms present in patients. It is a complex disorder that can mask itself as the conditions listed above. Also, the only way to diagnose endo is through surgery. It does not show up on imaging or during pelvic exams of the vagina. Additionally, the success of the surgery depends entirely on the surgeon's skill in identifying endo, as the common held beliefs of what endo looks like have changed over the years. If the doctor doesn't recognize the signs and take a biopsy during surgery, you will never get a proper diagnoisis.

It is difficult for a lot of endo patients to even get surgery. It can be expensive and it is often difficult to get costs covered by insurance. It is also difficult to get doctors to take "bad periods" seriously enough to consider surgical options. I asked for endo surgery for about 5 years at my OBGYN practice before giving up and using a expert from the Nancy's Nook Endometriosis group on Facebook. It was the best decision I have ever made. He was used to seeing women in my position, and after a 30 minute consult I had surgery scheduled. I live in New York, the 4th most populated state in the US, and there are only 5 endo specialists in my state. The doctor I saw is the only specialist outside of the New York City area. His office is 40 minutes away and I'm very lucky. A lot of women aren't as lucky. They often have to travel and fight with their insurance companies to get the surgeries they need to get their lives back.

So, if you suspect you have endo but your symotoms have been blamed on something else, listen to your body. Keep fighting to get answers. You are not alone and you are not crazy. You are in pain and you know your body best. FInd someone that listens.