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  • Not Sure What here

    Hi all,

    I have read some of the posts here and trying to get a feel for things. I've been having some health problems and I'm not sure what exactly is wrong with me... so I thought I'd ask a few questions and see if you guys could offer some guidance. Gonna be a long post... I apologize.

    My mother has had extreme IC for close to 15-17 years. Nothing has ever seemed to help her condition. I grew up my whole life with her saying things like "you better hope you never get this!" Well, I'm starting to think maybe I have.

    Ever since I became sexually active at 19 (I'm 29 now) I would get UTI's all the time. Don't think I ever got a kidney infection from them, but I was getting them maybe 6 times a year or so. For the last 4 years or so, I haven't really gotten any and I had been feeling ok. I may have had some issues but never really noticed them or just blew it off.

    Well, at the beginning of April... I found two papercut/fissure sores on my labia (I had found one previously a few years before but thought nothing of it) following that, after sex, I immediately did not feel right at all. I thought I was getting a UTI. But it was different this time because it did not hurt to pee but I had to go constantly. I was having pain in my pelvic area and in my vagina... so, I went to the urgent care for a UTI. They found "trace" amounts in my urine and gave me 10 days of cipro. I started to feel a bit better but after 4 days it actually got a little worse. And its hard to describe how it felt but it was just didn't feel like I had a UTI. A few days later, the urgent care called and said my lab results on my urine were normal. So, I went to my OB.

    The OB said it looked like a yeast infection and gave me medicine for that and took a culture. They also took a urine sample...totally normal. So, I took the yeast stuff... did not help. I then got my period and the OB was telling me it was just cramps and stuff. So, I waited till my period was over... it seemed to get a bit better and I ignored it. The yeast culture was negative.

    Then I had sex again and immediately after the pain and stuff started coming back... but the need to pee seemed to be gone. I went to the regular doctor and got blood work...another urine test...normal. Blood work was normal... doctor did mention IC as a possibility. The strange thing at the doctor's office was I had a 100 degree fever for no reason. I was also having some lower back pain and tingling in my vagina...

    The next day I found another "paper cut" sore and immediately went back to the doctor because I thought I had herpes. All the symptoms seemed to be herpes symptoms and it seemed to make sense. They took a culture and blood test for it. She also put me on herpes medicine.

    So... I thought that's what it was... got my blood work back yesterday and I'm very very negative (totally low end of the result scale) for both types of herpes. She also had tested me for yeast, bacteria ...etc...and everything was normal. My pap from the 4th of May was also normal.

    So, I started thinking about IC... could it be hereditary? What exactly does "pain in your bladder" feel like? I seem to feel ok the past few days but I was feeling like my uterus was going to fall out...pressure on my vagina... the random pains...pain in my pelvic area and in my vagina... could this be IC? And do some people have it more mildly than others? I was reading some of your posts and it seems like the pain was cripiling ... this pain is fairly managable for me and seems to help if I take a couple motrin.

    Any help is appreciated...the OB has thrown her hands up in the air at me saying that there is nothing wrong with me aside from having dry vagina which is probably causing the paper cut thingies.


  • #2
    I hate to be the one to say this but there are alot of people that I know of that IC runs in the family, and with all your symtoms it sure sounds like you have it to me.. But I am know doctor..I would make an appointment with your URO and have check you out, so that way you can get a foresure Dg..Good luck, keep us updated.


    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      Hi KittyCat,
      I also get those paper cut things on my labia as well now and then. It looks like a little crack in the skin. My gyne is not sure what it is. I also have IC, but that pain is way different from the pain I get from those craks when I get them. I also get burning in the vulva/vaginal areas too.
      I have heard that IC can be hereditary, but not always. But since you say your mom suffered with it, then there is a good chance yours could be I suppose. Have you been to see a urogynecologist yet? I would reccommend you see a urogynecologist who is knowledgable about IC so maybe you can get some treatment.
      Anyhow, welcome to the group. This is a wonderful group and all the members are so wonderful and helpful, it has been a God send for me.


      • #4
        Thanks for the replies ladies! Not exactly sure what a Urogyn is...and how would I find one? Guess I could ask my mom...

        That's interesting about the papercuts... I have read some forums where there are a bunch of women that actually get them and they don't know why... my gyn thinks its a problem with having dry skin and makes it easy to crack.


        • #5
          A urogynecologist is a specialist who deals with both the urinary issues as well as some gynecologic issues. I know there does not seem to be that many in this field, but you could go online and search the hospitals in your area and search under "looking for doctor" and search for urogynecologists.
          You could even call around at the different hopitals and ask. I would be sure to ask if they deal with interstitial cystitis though before making an appointment. Good Luck. Where are you from? I live in Chicago IL, not sure if you are anywhere near here though, but if you are, I would be more than happy to give you some names of some doctors in this area.


          • #6
            If you live in the Ft. Worth, Texas area I know a wonderful urogynecologist.


            • #7
              Have you talked to your mom about your symptoms? Are they at all similar to hers? I know the pain from IC can be referred to different locations, so it is really hard to tell where the pain is coming from. For me, I found out I have a kidney stone. I can pretty much tell when my kidney is hurting, but the rest of my symptoms are still unexplained.

              This group is amazing, they are always here to help me through my doctors appointments, testing, etc.

              And I hope you get answers and relief soon... Good Luck!
              dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

              Medical History:
              c-sections: 1988, 1991, 1997
              Viral Arthritis 1998 (Like RA, but went away!! )
              Pterygium & Dry Eyes since 2005
              Hysterectomy (Fibroids) 2006


              Me & Jerry ~ Sammy & Ryan


              • #8
                Maybe while you are waiting to find some answers about diagnosis you can ask your doctor for some estrace cream. I put that on the outside of my vagina because my gyno said that it looked like I was dry and there was a crack on the outside. He also has me using replens (you can get this at Walmart) and taking this twice a week. I would talk to your dr before you use these, but it is worth a shot in asking.
                Diagnosed with IC - March 2007
                Diagnosed with vulvodynia - June 2007
                -Lots of prayer
                -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                -Taking Prelief as needed (stopped because of pregnancy)
                -IC diet


                • #9
                  Yes, my GYN told me to use Replens... and thank you for posting that because I had forgotten what the name was.

                  I live in Northern VA ... the wierd part is after I stopped taking the Valtrex (since my blood tests were negative) I seem to feel normal again. So, confused I am again.

                  I think my mom has a good doctor in the area too.


                  • #10
                    Well I went in to the urgent care tonight to have them run a bunch of blood work on me just so I know... HIV, ciphilius, lupus... now I get to sit and wait in agonizing nervousness... the internet is an evil thing... you can type in all these symptoms and suddenly you have AIDS or Lupus...

                    Ugg the waiting sucks... minimum 2 days max 10!!! Ack!!