Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

So Important: Find A Specialist!

by Anonymous

My daughter has been suffering for 18 months with severe lower abdominal pain, chronic nausea, and headaches, along with bouts of constipation, brain fog, depression, anxiety, etc. She missed most of her senior year of high school.

She had extensive GI testing, was referred to Psychiatry for therapy for pain management/mindfulness and Integrative Medicine. She also tried dairy-free and gluten-free diets. We finally were told by a friend to see GYN for possible endometriosis.

We saw 2 doctors at a major university hospital. My daughter was referred for pelvic floor physical therapy, and when that didn't work, was referred to the Pain Clinic. After 4 series of trigger point injections and nerve blocks, she still had no relief. Neither doctor recommended a laparoscopy to even check for endo.

We were pretty much at the end of our rope when I started calling "endometriosis specialists" in NYC and then California, looking for a specialist in the midwest. Unfortunately, we could not find a specialist in the midwest, but had a free consult with a doctor in California, who finally "diagnosed" her with endometriosis, and recommended a laparoscopy.

What I have learned from these endometriosis/pelvic pain specialists is that most OB/GYN's do not get the training needed to recognize or properly treat endometriosis. The physician from California indicated his patients have had an average of 3.5 surgeries each before seeing him. Most GYN surgeons do not know how to properly remove the endo implants, so patients' pain returns.

My advice is to find a REAL specialist. There are not many of them in the U.S., so you may have to travel to see one. I also highly recommend the book "Stop Endometriosis and Pelvic Pain" by Dr. Andrew Cook. It's a great resource for everything from symptoms to treatment and questions to ask when looking for a good physician.

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