New to this forum

[Allie40]

Hello, I decided to try some type of support forum to see if I'm alone in my situation. I was diagnosed with IC after I insisted that I had to have something more then chronic UTI's for five years. I was right after several barbaric tests I found out I had IC, I had no idea what it was. So the testing and surgeries began. I had straight catheters, dilation of the bladder, blood work and more catheters. It was the worse pain I have ever endured. I switched urologists. This new doctor is decent, he performs the dilation of my bladder surgery every third, fourth month. He's never available so I take a surgery date when I can.
Meanwhile my PCP has not had much input at all, basically useless. I am told "there's a medication for IC, but your insurance won't cover it". That was nice to hear. There's no communication between my urologist and I. He schedules surgery and antibiotics that make me sick, that's the extent of our relationship. I then found a gynecologist and he wanted to again perform surgery to see if I had endometriosis because the pain never subsides. He performed the surgery and a few other tests and it was endometriosis. Again, still no communication with my PCP. So I have chronic pain from two diseases that are not curable. Constant stress from knowing each day will be the same makes sleep impossible. My family has been wonderful. I'm getting married this fall, bless his heart for dealing with this. I do find it interesting when I see other peoples post about the medications they are prescribed and if they work. My doctor will not give me anything for pain or diet plans. He figures I'm having pain yes but it will always be with me so he gave me trazadone I guess he assumed that would work. It hasn't! So now I'm in the process of finding a new doctor after dealing with my inadequate PCP for seven years. And yes I have tried every home remedy in the book

[dyno]

Hi and welcome! I am glad you are looking for another Dr; that was going to be one of my suggestions.

Unless you have a bacterial infection, you shouldn't be taking antibiotics all the time because they won't help the IC.

Something that my help you is the IC diet. In my signature line you will find a link to the IC diet. I would also encourage you to really read through this site. We have so much information on here.

We are all here to listen and guide you but the big thing is to find a good Dr. to work with you.

[Jadia]

Hi Allie, welcome!

I have to agree, antibiotics often end up flaring the IC up..so being on one constantly could be part of your issues! I would question any doctor's knowledge if they are prescribing you antibiotics without a clear indication of infection! That is a HUGE no no that has been discussed openly in the past few years given the doctor's (and patients who insist) they be given antibiotics when they have nothing it will treat.

One thing I suggest you look for is a pain clinic. If your doctor is not doing anything to control your symptoms, a pain clinic will go a long way in getting you the relief you deserve!

[Allie40]

Thank you

Thank you for the warm welcome and advice. I did see a pain doctor. I went in with all of my symptoms and what I had. I'm not sure if she read it. She took a rubber mallet and hit my knees, pulled and pushed my legs and said my pelvic and back pain must be a disk problem and set up a MRI and an appointment for lumbar injections. Needless to say after I cried to my fiance for hours out of frustration, I canceled the appointment. I know what I have (IC, Endometriosis) is not curable. I am trying to cope with the pain and stress, but it's extremely difficult. I just want a doctor who takes me seriously and realizes I'm not looking for a miracle. It would be nice to have a bit of quality of life for myself, my children and my fiance

[Jadia]

Did you tell her your diagnosis and show her the pictures from the Scope? That would likely be very helpful for her to know that your condition is IC and not a disk issue. But if the injections she was going to do are nerve blocks, those are what I get to cope with my IC pain. The exact type of nerve block I get are called caudal's. It has to do with the point of the spine where the injection is done. There are many, many different nerve blocks that can be done through the spine to help the pain of IC (if nothing else helps you). I believe the nerve blocks are considered the next step of treatment up if medications and diet are not working for you. There is a section in the forums under the heading "Treatments for Severe Interstitial Cystitis" and then "Nerve Blocks". There is a post in there titled "Nerve block scheduled-what to expect?". If you check page 3 I have a long post there that describe exactly what a caudal nerve block is and how it is done as well as some answers to typical questions about the nerve blocks used to treat IC and their effect. I am half wondering if maybe she may have been discussing this sort of treatment but just very very bad at explaining it!