Day 3: How did you get a diagnosis?
I went from doctor to doctor, each one saying I had a different thing or that the tests all came back normal. Some even had the nerve to tell me it was all in my head. It was torture. Emotionally and physically.
Finally I got a doctor who did the right tests, that the other doctors didnt even think to try. I was then diagnosed with Interstitial Cystitis, a autoimmune bladder disease.
Medline describes Interstitial Cystitis as:
Interstitial cystitis (IC) is a condition that causes discomfort or pain in the bladder and a need to urinate frequently and urgently. It is far more common in women than in men. The symptoms vary from person to person. Some people may have pain without urgency or frequency. Others have urgency and frequency without pain. Women’s symptoms often get worse during their periods. They may also have pain with sexual intercourse.
The cause of IC isn’t known. There is no one test to tell if you have it. Doctors often run tests to rule out other possible causes of symptoms. There is no cure for IC, but treatments can help most people feel better. They include
- Distending, or inflating, the bladder
- Bathing the inside of the bladder with a drug solution
- Oral medicines
- Electrical nerve stimulation
- Physical therapy
- Lifestyle changes
- Bladder training
- In rare cases, surgery
Few months later I went through even more tests, poked and prodded like an overused pin cushion, a few minor procedures and two exploratory laparotomies. I was then diagnosed with Endometriosis. Medline describes Endometriosis as:
Endometriosis is a disease in which the kind of tissue that normally grows inside the uterus grows outside the uterus. It can grow on the ovaries, fallopian tubes, bowels, or bladder. Rarely, it grows in other parts of the body.
- Pain, usually in the abdomen, lower back, or pelvic areas
- Heavy periods and bleeding between periods
- Painful menstrual cramps
The Endometriosis has now started sticking to my organs, making them shift and stick together, causing them to all work double time, to make up for the ‘invasion’ now in my body.
I recently had another Ex Lap surgery and was told it was everywhere. It had spread more massively than he originally estimated.
I am doing my best to be strong, to keep fighting. I refuse to give up. Maybe one day my story will help someone. Even just one person. Maybe Your story could help someone.