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  • Sharing my story...

    Even though I am not newly diagnosed, I feel like a newbie because I am just now coming to terms with my diagnosis, that was given to me about two-and-a-half years ago. When first diagnosed, I kind of shrugged it off and went on with my life. But things started to get bad, and I found myself visiting the emergency room quite often for severe abdominal pain, lower back pain, and other miscellaneous cramping. For some reason, doctors just didn't associate these symptoms with my IC, so when test after test came back showing that nothing was wrong with me, I really felt frustrated. I had a laparoscopy last year to see if I possibly had endometriosis, but my gyno said I had none at all (which is a good thing, i know). I also have a uterine fibroid about the size of a lemon, but my gyno says that could not be causing pain of this significance. (What I want to know is, how can *HE* know for sure??? When has he ever had a uterine fibroid???) Then, last year I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I started concentrating on that, thinking that these pains could be associated with that, but I am still in so much pain. My doctor looks at me funny when I talk about having pain and pressure in my lower abdomen that works it's way around my lower hips to my lower back. But after having read some of the other postings on this site, my symptoms sound very much like others' symptoms. And now I have a new hope that maybe if I make yet ANOTHER appt with a urologist, that he can get me on a program that can help me with the pain. I have tried to contact the urologist that diagnosed me all those years ago, but he has retired. I would like to know if anyone has a list of urologists that specialize in IC. The doctor that diagnosed me kind of "sent me on my way" without really offering any kind of options for me. I would appreciate any help, and even just chatting and sharing would be helpful.

  • #2
    Hi Shelly! I already had a great uro, but if you need a very good list of IC-related uro's you can go to and join the IC foundation. It is $40 for one year (is considered a donation) and they will send you a ton of info: most importantly, a list of tried and true IC uro's in your area. Otherwise you could key in urologists (on AOL) and find their national organization and contact them for IC uros in your area: or try to look up the national assoc. of urologists by calling a urologists office and asking them. I have a feeling you are not following the IC diet---it's all here on this website. You should also click on the IC handbook on this site too. The diet is one of the most important treatments for IC. Anyway, good luck! Bye!


    • #3

      The ICA website ( has a list of volunteers broken down by state. Any of the volunteers in your area should be able to direct you to urologists that have asked to be included on the ICA lists. These are urologists that have chosen to familiarize themselves with IC and want to help IC patients. You do not need to be a member of the ICA to contact the volunteers listed. If there are no volunteers listed in your state, there are a few names at the end of the list that can assist you.

      The ICA also has lots of good informational brochures and articles available (at a small cost) that discuss everything from self-help to diet to the various treatment options.

      I hope that you're able to find a urologist in your area that is able to help you.


      • #4
        I just wanted to share a short story with you. I was only officially Dx'ed last week but I have been aware that I have IC for several months now... Anyway, last summer my Dr. was away and I saw a Dr. I did not know. He asked me what my symptoms were. The most important symptom I have is bladder pressure. (The constant trips to the bathroom are something I can deal with at this point...) Anyway, this man stood in front of me and said, "How do you know it's bladder pressure?"... The only response I could think up in my complete state of anger was if I kicked him in the winkie how would he know that he was in pain in that region of his body. I am not usually so agressive but how can someone be so out of touch with his or her patients. So, since then I have learned to stand up for my medical treatment. After all, if I don't stand up, no one will! Now I have a GP and Uro who are excellent and actually remember my name. Goodluck! JC


        • #5
          I wish I had been more aggressive when I was younger, but alas it is a "gift" that comes only with experience and age... Way to go JC! Julie B
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author

          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........

          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter

          *Let's Connect!*


          • #6

            Let me tell you about one doctor I encountered at Emory in 1996 when I was so sick with Vulvar Vestibulitis, endo, IC. This dumb ass doctor had the nerve to tell me very to the point that he wasn't going to do anything to help me because my regular GYN could handle it. I tried to persit for some help and once again he stated "I'm doing nothing." At that point, I crossed my legs, put my hand in my lap, sat up real straight and without flinching said "Well if you penis was on fire, I can assure you that you would be screaming for help." The doctor was so stunned he jumped from the chair and said "well I've never had a patient say such a thing." To which I replied, "well if you will sit down and shut up you might learn a thing or two." His face turned four shades of red and he said "how dare you lady." At that point, I said "you know what, never mind because I can see you incompetent!" His face got even redder and he stormed out of the room. Even though I was in severe pain, I laughed my ass off. He obviously had no clue just how direct a woman who's vagina was on fire could be! Thankfully, today I've got another Emory doctor who is capable. If anyone ever goes to Emory and needs a GYN -- forget Dr. Ira Horowitz because I consider him a danger to a woman's health.



            • #7
              I appreciate everyone's replies. Since my initial post, I have started on the IC diet (albeit slowly), and made an appt with a recommended Uro. My appt isn't until July 31st, so I will have to deal with it until then. I also have an appt with a new Gyno as well in a few weeks. What I have learned thru all this is that you have to be your own advocate. You cannot leave everything up to Dr's, cause they don't know crap! So there!


              • #8
                I have hd IC for 20 years now. In 1979, I went to my first urologist who did surgury the next week. I had a meatotomy which was cutting the muscle in my urethra. Then I spent a year having my urethra dilated and then so I switched doc's. This was an old treatment. After the birth of my daughter ,a C-section in 1986 I could not urinate and found a new urologist in the hospital who I saw until 1998. I ws contolled with med's and hydro-dilations in the office.
                In 1998, I moved to Los Angeles and was treated with heperin/marcaine instillations and 2 office hydrodilations and finally a hydro in the hospital last Christmas. I got worse and this urologist pretty much gave up on me. I saw a new gyne and he recomended a new urologist.She then did a potassium test and recommend either DMSO or daily heperin instillations. She wasn't very good in the old bedside manner and the nurse from my previous uro gave me the name of someone else who I then went to see.He has a great bedside manner and started me on Eliron instillations,once a week for 6 weeks.They are not FDA approved yet. They have a high success rate but not for me.I had a hard time keeping it i as my bladder wanted to spasm them out.I then had another in office distention and have been worse. Yesterday, I saw him again to discuss what else to try.He did another ultrasound to show me that the lining was still pretty much shot. He talked about laser surgury but after reading all the info on this board and others I brought up that I had never tried DMSO.I am starting that tommorow.I have been on every medication known to man at this point.I take elmiron,2 tablets twice daily,atarax,25 night,larginine 500 3 times a day and pyridium plus 3 times a day. I tried imipimine and it didn't help.I take detrol sometimes if I am really spasming.And I take vicodin EX 3 times a day.I am still experiencing pain.I also follow the diet. I just want relief as nothing is working for me. I have been in a flare for 2 years now.Not to mention it is ruining my life. I feel I know more than most doctors but never enough.Has anyone had laser surgury with success and how many people get relief form the DMSO.I have to tell you I am nervous about the smell I hear about.I have a job wher I am constantly around people.My doc said it only lasts 10 minutes but people on this board have spoken of 72 hours of stinking.Also I keep seeing neurotin on this board. What kind of drug is this and how does it help IC?
                This board has been a lifesaver to me.I feel so much more informed. Has anyone done a trial involving herbs? A nurse told me about a trial but I had just started the elmiron instills and wanted to do one thing at a time. Anyhow, this is my story. I have constant frequency and pain. Pain rating the highest but as we all know this is all so related.


                • #9
                  I really feel for you, and I'm sorry to hear that you aren't being helped by any of these meds. I am curious, though, about what your symptoms are. I know you said you're in alot of pain, but I'd like to know some specifics. My problem is, I have lots of pain too, but I need to determine if it is caused by IC, or some other condition. I have frequency, but I don't feel it's out of control. I guess I have learned to live with it and don't notice it much anymore. And although there was a time when I had UTI's right and left, I don't get much of those anymore. I would like to know from you, and anybody else, what type of pains you are having and what the pains feel like. I was diagnosed with IC four years ago, but then got pregnant and had a whole slew of other medical problems after that so the IC kind of got pushed to the "back burner". Now, after reading these postings, I've decided to concentrate on the IC and get re-evaluated. My uro has since retired, so I have made an appt with a new uro on July 31st and am hoping he will get me on some sort of recovery plan. The pain is so bad, and my pain meds are starting to not work so well anymore. I have started the IC diet, so maybe that will help too.


                  • #10
                    Wow kc you have really been through a lot with your IC. I can't believe all that has been done to you with so little success.

                    I hope that you will find success with DMSO. I have had them and you do smell for at least a day afterwards (everyone is different). My husband told me that I smelled like cream corn. Some say it is a garlic smell so I think it just depends on your body and how it reacts to it.
                    Lots of people have had great success with it though.
                    I too have had bad pain with my IC and I was at my wits end until I went to a pain clinic. Now I am able to heal and my pain is under control. I am able to do all of the activities that I used to before IC.

                    Good luck to you with the treatments!

                    Sending you lots of hugs,

                    "Faith precedes the Miracle"


                    • #11
                      To Sherry:


                      -Wen. :-)