Someone is FINALLY Listening to Me

I am not sure if it is a Christmas miracle or just persistence paying off, but I am finally being heard. Doctors are finally beginning to listen to me. I have been through such hell over the last few years with a variety of doctors. I have had to leave certain doctor offices because they accused me of making up my symptoms (before diagnosis). I have abandoned other doctor offices due to verbally abusive treatment or because the staff was just not educated enough to treat my symptoms even with a diagnosis.

One main problem I have had for a while is that no doctor ever really wanted me to try MY ideas. So a week or so ago I went to the urologist discouraged as ever. I even brought my mom for emotional support. My current urologist is one of my nicer and more knowledgeable doctors, but I have only been there a few months. I was scared he was going to be angry with me for stopping my bladder instillation treatments. I was supposed to do six treatments, but after four, I realized the the debilitating pain and flu like symptoms they were causing were just not worth it. The treatment was ruining my life more than the condition. So I stood up for my own body and stopped going.

The doctor came in and to my surprise he was not mad at all. He began going over a laundry list of possible next steps with me, none of which I was too eager to try. That's when I just blurted it out "I have a lot of shooting nerve pain and I really want to try such and such medication". "Okay," he said as he took out his prescription pad. I was in happy shock. I have done a lot of research on this medication and it really seems like it could help my symptoms. It is a very common medication, not addictive or a narcotic, so one would think there would be no problem getting a prescription for it. Just a few weeks earlier I requested the same medication (from one of my other doctors) and the verbally abusive, witch like nurse practitioner told me that I am not allowed to take oral medications and she will only prescribe me creams. (Hmmm...that makes a lot of sense, especially since every cream she has ever prescribed me has made me sick). So this is the mentality I am used to dealing with, so I was just so happy I was finally getting to try a treatment I feel is right for MY body. 

My mom went on to ask the uro a few questions about IC. When he got to a certain part about food and IC, he said "your daughter can probably tell you better than I can, since she is the one who deals with it everyday". I smiled again. I AM THE ONE WHO DEALS IT EVERYDAY. Why do more doctors not realize this??


I am not just some fool. I write this blog. I have spent hours researching all sorts of causes of pelvic and bladder pain. I spend a lot of time reading and posting in multiple support groups. I have written published articles about pelvic and bladder issues. I may not be qualified to do surgery, but I sure as hell am qualified to talk about IC and give my opinion on treatments and medications. It makes me feel satisfied that finally a doctor sees that I am an educated patient.

As if that day couldn't get any better, I had been struggling for months to get into another specialist for pain connected to the same hospital as my uro with no success. He said to have the girl in the front of the office put a call in. She made a call and I got an appointment just a few days later!! This doctor and his senior med student spent an hour and a half with me going over every pelvic or bladder issue I have ever had from 16 until now. They came up with a second medication for me to try.

It has only been a few days since I have started these two, new treatments so I am clearly not pain free, but today I was doing a lot better than I have done in a couple of months. My pain was lower. I think my nerves are finally being calmed. I don't expected to be cured and I don't need to be cured to be happy. I just want to get to a level where I have more good days than bad. I want to be in the driver's seat of my life. My vagina and bladder can sit in the passenger seat (or maybe even the trunk for that matter). When my pain gets below a certain level I am so much happier and productive. I can be a better person.

I will keep you all updated, but right now I think I am on the path to something positive in this whole whacky world of IC treatment. Never stop fighting. Just a few weeks ago I was ready to give up hope completely because my symptoms were out of control and mismanaged and now I have not one, but two doctors being nice to me and am on a treatment plan I am happy with. 


Will this new treatment be my magic combo?? It's too soon to tell, but it feels great to have hope and it feels even better to be listened to by doctors. I live and breathe to fight for IC and Vulvodynia awareness some days. My opinion counts and so does yours. Every patient's does. It is your body, find a doctor who will work with you.


Well that's all for now, but in case I don't post again before the holiday weekend I want to wish everyone a very Merry Christmas and a very Happy Hanukkah. Thank you for all your love and support. I hope you enjoy a fun (and hopefully pain free) time with family and friends.