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It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

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  • It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

    A little background information: I got my first UTI when I was about 7 years old and got them frequently from ages 7-10. I always had trouble holding my urine in as a child even up to 10 years old. My period started at age 13 and were very heavy with no cramps or pain. I am not sexually active and never have been.

    In December 2015, 16 years old, I was on my period and having severe pain. I could not leave my house and spent most of the week stuck in the bathtub. I was also having all the symptoms of UTI, with negative tests. I was having horrible painful bladder pressure and both urgency and frequency. Both WBC and RBC were present in my urine, but nobody knew why. I went to the emergency room several times for this and i've been given pain pills and misdiagnosed several times. Some doctors even tried to force antibiotics on me saying that even though all my tests were negative, that I had a UTI. I was finally put on the Depo Provera shot to stop my period and was put on Naproxen Soduium and Amitripyline. These medications are currently not built up in my system enough to help, but I have high hopes. It took a ct-scan, an abdominal xray, 3 ultrasounds, 10 urine tests, 2 blood tests, a trip to the urologist, and an examination done by a gynecologist, to determine that I had IC. Diagnosis is today, 3/2/16. The urologist didn't even mention IC to me and told me there was nothing he could do for me. My family doctor assumed it was an ovarian cyst, but ultrasounds proved false. I am now being considered for endometriosis- IC's "evil twin" and am on my way to a better life. I just wanted to post this to maybe help someone out there who was just as lost as I was. Someone who gets told to "suck it up" and are told no true answers. If you are reading this and are having symptoms with no answers, please take IC and/or endomietriosis in consideration and suggest it to your doctor. You know your body more than anyone else and it's important to get help for yourself, especially if it affects your daily life. Thank you for reading and good luck!

  • #2
    Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

    Are we twins?!?! I just turned 20 in December and have been battling Interstitial Cystitis since June 2014 when, as I say, "all hell broke loose". I have been in chronic pain since I was 10 yo though... UTI's were off-and-on for years with no explanation...

    I have;

    Migraines - both Atypical and with Aura
    Lyme Disease
    Chronic Fatigue Syndrome
    Premenstrual Dysphoric Disorder (PMDD)
    Ehlers-Danlos Syndrome
    POTS (or some kind of Autonomic Nervous System Dysfunction)
    Peripheral Neuropathy
    Patellofemoral (pf) Dysfunction
    Pelvic Floor Dysfunction
    Celiac Disease
    Social Anxiety

    I probably missed a few... lost count myself...

    We need to talk!

    I have had about 10 urine tests, 1 CT scan, 1 ultrasound, about 4 or 5 blood tests. Been to 17 different doctors plus 3 ER visits and another 5 walk-in clinic visits. Most tests were always negative.... Had like 8 different UTI's then like 2 kidney infections... Been on so many antibiotics I can't even remember. Most were pills but a lot of shots too. Tried birth controls too (not to prevent pregnancies LOL). Tried Homeopathic doctors along with Western doctors as well... Went to a Pelvic Floor Therapist for months too...

    Period started when I was 12 and that's when it really started to get bad.

    I'm on Elavil and Zoloft right now, they don't help though. I've been taking Elavil for 1 1/2 years now, and the Zoloft for about a month. Elavil was originally for Cystitis, but has since been moved to help with migraines and chronic headaches and now has stopped working for all of the above. I was also given Gabapentin for really bad episodes, but it doesn't even touch me...

    Since then I have trained a Service Dog and am fighting for my SSI rights... I was given a Handicap Placard because I'm on crutches.... Yea... everyday it's a "what if" game.

    So.. where do you live? I'm in Lakeside, OR currently but we are also down in El Segundo, CA. We are in the process of moving up to OR, or should I say we have been in the process for the last 2 years... All the doctors are in Los Angeles so moving to OR permanently is out of the question for sure. . We travel back-and-forth every 5 months or so, stay in each place as long as needed, and back we



    • #3
      Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

      Oh my, that's a lot of things. IC is my primary diagnosis and I also have chronic costochronditis and am currently waiting for March 10 to see if I have tendinitis. I'm 100% positive I am clinically depressed and have social anxiety, however I am not diagnosed and refuse to tell the truth on the screenings because I feel like it will impact my life in more negative ways than positive. Technically the medicine i'm on, Amitrpyline, is an antidepressant, so I'm kind of being treated for it at the same time as IC. I'm going back to the gynecologist in three weeks to see what actions they're going to take to find out if I have endo.

      The amitripyline has given me no help so far, but the doctor says it may take 3-4 weeks to start working. It's currently giving me side effects of dizziness, drowsiness, trouble breathing, and bad headaches. With the pain i'm in right now, I have no appetite and am constantly nauseous. I am 105Lbs at 5'5 and can only eat about one meal a day forcing myself, but i'm excessively thirsty, so I drink a lot. My doc ordered me to keep a food/drink diary to try to pinpoint what triggers my bladder, but I feel like it isn't what i'm eating or drinking that is causing my flare ups. My doctor also gave me pyridium for flare ups, but I haven't tried it yet.

      I've had TONS of visits to the ER and to my family doctor because i'm still in high school and you're only allowed 10 parent excuse absences and I've been in too much pain to even walk straight, so I've had to go to the hospital to get excuses and I currently have 8 doctor excused absences, not counting the times I've left school during the day for the dr's. Before my diagnosis, I was treated very poorly by school staff when I complained about my pain and it really sucked. I'm happy to finally have a name to my symptoms, but i'm upset at the fact that treatments may fail and I may have to "deal with it". I feel like more time and research needs to be put in this as well as endometriosis and ovarian cancer. I feel like they are not focusing on these conditions because the two are solely women's diseases and IC in men is less common than in woman. It also makes me mad that a lot of woman's symptoms are ignored and labeled "Woman pains". I feel like there needs to be more awareness to these conditions as well as more consideration and thought process when it comes to abdominal pain in women. I'm ranting, sorry.

      Anywho, I'm happy to find someone who can relate to my condition and am always glad to meet new people. I'm sorry to hear about your conditions and what you've been dealing with even though I cannot even begin to say I can understand most of your sufferings. I live near Erie, PA. As I said in my post, I'm 16 years old and newly diagnosed. I do not have a service dog, however, ] I am very fond of pitbulls and have one myself. Sorry for the long reply, the rants, and the wait. Have a good day and I will try to respond faster if you reply.


      • #4
        Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

        Yea Amitripyline is the drug name but Elavil is the brand name, so we are on the same thing. I was also given Pyridium and you can get it over-the-counter by the brand name "Azo" at Rite Aid or any pharmacy. They come in regular 95 mg strengths and max strength which is 97 mg... so yea, they help though. If you are flaring I would recommend taking two tablets instead of one as one usually doesn't help. So if you take one and it doesn't help, you then have to wait about 1 hour to feel the second tablet, so it's better and more effective to just take 2 right away. Take two while on a flare and your whole urinary tract is numb... make sure to drink lots of water while on it, because you have to keep peeing to help it run through your tract. Take ONLY with food in your stomach. First time I didn't read that and throw up, so yea eat! LOL. Yes, it took about 3-4 weeks to feel something for me too. It makes me dizzy, sleepy, thirsty, dry mouth, and weight gain, the usual lol.

        I was homeschooled since little, however, I was constantly in-and-out of different schools in my city cause well I wanted friends and a life... But yea my mom homeschooled me because of migraines number one and with the Fibromyalgia my memory of what I learned yesterday in school was gone, literally. My teachers would yell at me saying "why can't you remember" and "you just learned this", so yea they were so not helpful. Yea doctors up here have basically told me to leave because they no longer know what to do with me. I'm also 5' 5" but wit the Elavil I gained weight. From the time I was about 13 to about 17 I was 120 pounds even. Once I started the Elavil about 1 1/2 years ago I am now 136 and gaining.... It sucks . I too documented everything I ate but my urologists didn't even bother asking me about food. I had to Google IC and the IC food list and the "IC belly" 100% on my own...

        I also have anxiety attacks and panic attacks, which is what my SD is mainly for. She is trained to alert to the beginning signs of an attack, then to do DPT which is Deep Pressure Therapy and Grounding which also helps a lot with dizziness. She also picks up items for me, gets stuff for me, as I am on crutches and will get me meds and alerts to high pain levels as well. She also pulls my socks off for me when I cannot bend my knees <3. That's her latest task... Pretty soon she is going to start carrying a backpack with all my meds (including an EpiPen), wallet, phone, tissue (for nose bleeds), her water bowl, her treats, protein bars for me (I'm also Hypoglycemic), poop bags... yea anything I need really. As long as the total weight is under 2 1/2 pounds . With my back and on crutches and all the stuff I have to carry this is the easiest way I have come up with so far. My mom is done being my pack mule roflmao! I tried a shoulder bag but that was worse than a backpack.... you can't win :0.

        Yea the first Urologist we saw was a man and he said that I was "too young" to have IC!!! Yea he said that!!! Later we started going to a support group and we told them what he said and they all said "find a new Urologist!" So we did... I also asked them about the diet because no doctor had ever told me about food causing flares and they said that most don't say anything about food. They just want to prescribe pills and move on to the next person... But I hear you with the "deal with it" and the "Women's condition".

        I noticed that my period caused me to flare bad! Along with my PMS and PMDD I then had diarrhea/constipation (I also had IBS), 10 on a pain scale cramps, migraines, heavy bleeding, and now IC comes along for the ride. Yea I just laid in a dark room crying basically... OTC meds... yea right! I laughed at those big time! They did nothing! Tried hot baths then cold baths, then hot showers then cold showers, ice packs, heating pads, exercise, no exercise, all the OTC meds I could try, birth controls.... nothing ever helped ;(.

        To this day even with the Elavil I still get migraines and daily headaches. Both come along with nausea, light/sound/smell sensitivity, vertigo. It's like Seizure meds, they don't stop them they just make them manageable.

        All this is why I'm applying for SSI and intend to win too!

        Yea soooo....hmmm... My next doctor is a doctor for MS. I exhibit all the symptoms so we are gonna take that road and see where it goes. It's either an LP and/or an MRI. LP, no way, too painful. So MRI it is.

        Do you drink caffeine? Anything that has caffeine is a bladder no-no. So no chocolate too .
        Try going gluten free for a week maybe... wheat is a very common bladder irritant.
        Anything that's citrus; grapes, pineapple, lemons, limes, oranges, tomatoes, cranberries, strawberries, blackberries, blueberries, melons, so on. All bladder no-no's.
        Check any kind of dressings and sauces too. Ketchup=nope. Vinaigrette dressing=nope. If they are sour or citrusy most likely a no.
        Try dairy free for a week too. For me dairy is also a no (I'm also lactose intolerant). Ice cream is a huge flare.
        Too much sugar too.

        So yea those are the main ones.... That's what I would suggest.

        Can't hurt to try, you know?

        When I say dairy and gluten free, I mean 100%. check everything you want to eat. Even things like macaroons have wheat in them now .

        I drink water, watered-down Gatorade to keep my electrolytes up from IBS, almond milk, rice milk, coconut milk, hemp milk, cashew milk. Those are all on the "can have" list. Not much else....

        Oh try no bubble water too! The carbonation set me off bad! That's also a common bladder no-no.

        Um, yea...

        Good luck!!!!


        • #5
          Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

          Oh, okay. I'm now being put in cyber school due to all my absences and my inability to be able to get ready when I'm in pain. I actually want to gain some weight. I am made mocked by nearly every person who sees me eat because they say I don't eat enough and i am too skinny. I found out I had it before being told as well. My family doctor finally said that she thought it was IC and my gynecologist diagnosed me.

          On Halloween of this year, I was volunteering at a hayride and I was one of the scarers. I wasnt paying attention and as the wagon was going by, it crushed half of my foot. Funny enough, I was able to stay in character the whole night. When I first damaged my foot, I couldnt get an appointment, so I had to buy crutches since it was incredibly painful to walk.
          I could not use them. They were such a pain in the butt just to get around, so I ended up just wearing slippers and avoiding walking on the side of my foot as much as possible. I don't know how you manage with the crutches, but you go girl. Lol

          Because of the depo, my period has been really irregular and i've been having it on/off this whole month, which means i
          never know when pain will come up. No IBS for me, thankfully, however some of the forced unnecessary antibiotics have made my stomach upset at certain points before I was able to get a diagnosis. Pain medication does absolutely nothing for me. I was even on oxycodone for a time and they had no effect on the pain. Hot baths work okay for me, at least it's the only thing that has any effect.

          Im definitely having sensitivity to the sun. I cannot look outside because it reflects off the snow and gives me a major
          headache. I'm in choir so some of the side effects are a problem for me. I run out of breath and get extremely dizzy.

          I do drink caffeine, but not often. I am not a chocolate person at all, so that's fine for me. I just ate a whole bowl of mixed fruit last night for dinner and it didnt seem to set me off, so I think i'm okay for that. I don't drink or eat many things with dairy.

          Thank you for the advice and I just may give it a try.

          You too, goodluck with SSI!


          • #6
            Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

            Yea sun is a huge trigger for me, both for headaches and migraines. I wear sunglasses and a wide brimmed hat 24/7 outside, along with a long-sleeved shirt, pants, and shoes. The sun never sees my body, lol. If i'm in the sun for even 10 minutes without and hat I will get a migraine about 80% of the time. Most times a hat helps, but it just keeps the sun off my face, it still hits my head and "bakes my brain" as I say, lol.

            My crutches are forearm crutches so they are a little better. I twisted my ankle like 3 years ago back when I could do Taekwondo, however it was only 1 hour a week so it was doable. I couldn't walk on it for a month. It was black and blue and purple and swollen and just so ugly. When I twisted it I heard a crunch and a pop, ewww... I was on regular crutches then, they were so painful for my armpits and my shoulders. My forearm crutches I just got about a month ago and they help for like the first hour then the pain kicks in. As I have Neuropathy both in my feet and hands I had to choose kinda. They put all the pressure on my hands, wrists, shoulders, and back and take the weight off my hips, knees, ankles, and feet, but everything has it's side effects sadly.

            I am going to order crutches called Smart Crutches probably tomorrow. They will be shipped from Portland, ohlala, rofl. They are made in the UK and are completely forearm crutches but they are adjustable 180 degrees and they come with padding which is a plus. I had to add foam to my regular forearm crutches but they are still a pain in the butt. Insurance doesn't cover them because they are too new so I am having to pay out-of-pocket sadly. They are $155... steep... but necessary. A few people I know use them for a lot of the same conditions that I have and highly recommend them, So I am kinda excited.

            Any who, yea I would suggest taking Probiotics to counteract the antibiotics. I was taking them for months during all this. I take them now too when I can remember, lol. Mine are in the fridge and my meds are in my room, so I don't see them and forget ;0.

            I am glad to hear fruit doesn't upset you! And no IBS! Woot Woot!

            I got my sun hat at Costco for like $15. It has an extra-wide rim and is SPF 50. My sunglasses are polarized, so you might try those too. Any place has them, even like Target or Walmart or Walgreens. For the sun reflecting off the snow though you might try skiing glasses. They are specifically made for that reflection. I was told that the brand SunClouds are really good and made for that exact reason. I have seen a few on Amazon for like $32 and up so not too bad.

            Have you had a CBC lately? I assume so... my last CBC I was low on vitamin B but the doctors didn't say a thing so I wen't ahead and got on OTC vit B3 to take. Since I am never in the sun it makes sense. Also taking vitamin A counteracts the effects of vit B in your body, you might try taking that too... I tried taking vit A for a good 4 months and didn't feel a thing, but your body could be different.

            I was going to suggest trying an online school too, but you are, so yea! If you can I would ask for real books, that way you don't spend too much time reading on the computer. The computer has always set me off.... You can read the lessons on a real book and just take the quizzes online... I don't know, helped me, so, you can try, can't hurt, Hey?

            Ummmm, yea... so.....

            Good luck!!! ;-)


            • #7
              Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

              Sorry vitamin "D" low on. Now taking vitamin "D3"...


              • #8
                Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

                And vitamin "A" counteracts vitamin "D".... sorry... getting all my letters confused :0.


                • #9
                  Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

                  I suppose i'm here to update my conditions as I had my foot appointment today. 3/10/16 I have cracks in the growth plate of my foot and have been diagnosed with Raynaud's disease. I'm going to be scheduled for testing sometime soon and I have yet to make my depo shot appointment and my gynecologist appointment is the 23rd to discuss endo.

                  I just keep getting diagnosed with more and more stuff and it sucks. I haven't had a flare up in a while, but am still constantly peeing and having the urgency everyday. I keep having pain on the left side of the lower quadrant of my abdomen and in my lower back and bladder.

                  I've stopped writing in my food diary because it doesn't seem to matter what I eat. I'm only taking the amitripyline because i cannot eat to take the naproxen sodium. I haven't had my period yet, which is good. Symptoms are pretty much the same as they've been. I've started wearing sunglasses to some of my classes because it's been so nice out that the sun shines through the cracks of the window shades directly towards me. I've been extremely dizzy lately and find myself falling many times a day. I haven't weighed myself, but when I have my appointment, I will update that too.

                  I've been barely eating and i'm still having to deal with constant nausea. I've been in a bad mood lately.


                  • #10
                    Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

                    Sometimes it gets discouraging when we get hit by more than one physical problem at once. Sometimes not eating can actually bring on nausea --- I know it sounds weird, but please do try to get some food in your stomach, even if it's just plain crackers. I know that when I was having severe nausea from pain meds, the only thing that helped me was that I kept crackers by my bed, in the bathroom, in my purse --- so I could nibble them when I couldn't stand anything else. Has your doctor ordered anything to help with nausea? If not, I suggest you request something. Zofran is the one that finally helped me --- but I still ate crackers even when up to the bathroom in the night.

                    I hope you feel better soon.

                    Stay safe

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                    • #11
                      Re: It's a UTI, it's a kidney stone, it's a cyst, no it's IC!

                      My doctor is fully aware of my weight loss, poor appetite, and nausea. When my problems were mistaken for a cyst, I was put on Tramadol, ibuprofen, and zofran. She then switched the zofran to dicyclomine because my weight was continuing to drop. I get hungry, but every type of food seems to disgust me with the way i'm feeling. I have about 9 different prescriptions i've been given in the past three months and none of them have been working so far. Thank you for the suggestion, anyway. I do try to eat at least one meal a day and I will try the crackers. Thank you, you too.