Too many UTI's gave me IC
Hey everyone, Im not sure if anyone will benefit from my story but I thought I would share it just in case it helps someone in their struggle with IC. I was 100% healthy and active at 26 years, never had any bladder problems except the yearly UTI or two. Ive been living overseas in Vietnam for the past 2years teaching English and was not aware that with really hot weather comes the ability for bacteria to reproduce more rapidly. I got 3 UTI's within 6 months and then a fourth was the bad one. After 2 weeks of antibiotics I still felt like I had an infection so I went to the doctor (foreign clinic) and he did some tests and told me my infection was gone. I was so confused because the urgency was still there 100%. And so began my quest to solve this irritating and painstaking problem. After months of extra antibiotics (despite tests coming up negative), cranberry juice, gallons of corn tea (vietnam's version of cranberry juice), anti inflammatories, pain pills, cranberry supplements which I had to have ordered from overseas, std meds, std testing- they tested me for chlamydia, ghonnorhea, HPV in the urethral wall, full pap smear for a second time, endometriosis, ovarian cysts, pinworms, and mycoplasma (becomming a common std that causes urethral pain/urgency that most people dont know about) Schistosoma ( foreign std that causes urethral irritation), drew blood & blood tests, TWO cystoscopies, x-rays, incontinience & bladder stone tests. The doctor put me on Driptopane & spasfon for 2 weeks and then basically told me it was all in my head. They said there was no way I could have permanent pain from too many UTI's and nothing else was showing up.Then I met a sweedish urologist who told me to get a large pack of syringes and take the needle off the end, then use Fucicort cream (cortisteroid/antibacterial) and inject it into my urethra twice a day for about a month (Just putting it on your urethra does NOT work). Twice a day for the first 2 weeks (morning & night) then after that to taper off it (3rd week- only at night, 4th- every other day at night and so on) After 2 weeks I was feeling (0% better- the urgency was gone! Now I made a big mistake that hopefully you wont make too if you use this. I had sex with my partner too soon. I didnt give enough time for my urethra to heal after using the cream and I think I irritated my urethra all over again. I tried using the cream again and it was never the same. This was the most frustrating thing of all- I was almost better again, living my life, walking around drinking drinks and not having to worry about going to the bathroom constantly. So after that things got harder, I was crying all the time, couldnt sleep- all the usual bad crap that comes along with IC. Then it got so bad I went back to America and got tested ALL OVER AGAIN- what a nightmare! At least I managed to get myself some health insurance when srriving in America because mine had run out in Vietnam so this had also burned a pretty big hole in my pocket. But anyways after being re-tested (at this point it was 9 months after the UTI that caused everything) they had me do those bladder installations (6 of them) they did nothing. By the way- if you do them be aware that they have different sizes/thicknesses of the tubes. I cried every time I did them- maybe it was because doing them made me realize I would never get to have sex again, have children or even maintain my sanity feeling like I had to pee al the time or maybe it was the sheer uncomfortable feeling you have while getting a tube shoved up your urethra- but on my last installation the nurse said to me "oh, maybe I'll try using a thinner one this time". I thought "are you kidding me?!!! You have thinner ones and you didnt use them!"Geez, I was so angry. But so a week later I was to fly back to Vietnam for another teaching contract andI still wasnt better. The doctor did a thrid cystoscopy and then went on to tell me I have Pelvic Floor Dysfunction on top of all the other problems. Now, the pelvic floor dysfunction was developed due to the fact that they had spent so much time trying to diagnose me for whatever bladder problem I had. At this point my vaginal area was in so much pain you couldnt insert the tip of your finger in it. My healthy body I had had my whole life had completely changed. I was really hitting a breaking point when the doctor told me to go to physical therapy. Now while the physical therapy would takemonths to have a effect, the therapist recommended me to go to a vulva/vaginal disorder doctor who worked on urethral/bladder pain as well. I went and saw her and she immediately without any doubt diagnosed me with IC as well as Pelvic.F.D. She put me on Nortriptyline immediately. Its been 4 weeks now, Im drowsy most all the time but its worth it because the meds are working. Slowly though. I went up to 3 pills/night (30mg) & tried 4 pills but it was too much. She said to take it for 6 months. They dont have the cream Fucicort in America that I had used in Vietnam and I wanted to try it again to see if it would work like the first time I used it so the doctor had me take a tube of antibiotic cream & mix it with betamethasone valerate ointment. You HAVE to mix it with the antibiotic cream otherwise you will get a UTI, guaranteed. Then fill the syringe and inject it into your urethra. Use a mirror. It doesnt hurt, just makes you feel like you have to pee- but what's new if you already feel like you have to go anyway! The first time I did this when I removed the needle part off the syringe ( it just pops off) the plastic syringe tip was a perfect fit to the measurements I read online about how much can fit in your urethra without pain being caused. And it only goes in the urethra a little bit. Do it once in the morning and then try not to pee for as long as is comfortable. When you do it at night, try and sleep with it in you. If you have to get up and pee it out- its ok, dont put more back in cuz you dont want to poke andprod and irritate your urethra further. Origionally the sweedish urologist had told me thatI wouldnt even feel a difference for 2 weeks so dont excpect this to change any urethral urgency overnight. The second time I used the cream the syringe tip was weird and had a covering on it so i had to cut the cover off and then it fit inside me. Try and use a new syringe ever time and if you cant then wash your syringe with feminine wash after every use. And dont do what I did and have sex too soon after you start to feel better, you could mess it up big time. Well after all this, I've learned a lot. I know IC is so hard to deal with and I think its just so important to know you aren't alone out there, that other people are feeling the same struggles that you are. If anyone is having urethral pain or irritation- especially urgency then I highly recommend using the cream as long as you follow my directions exactly. Because it worked wonders the first time I did it. And dont get too many UTI's because one day the pain might not go away. I wish someone had told me that earlier in my life.After 1 year now of not being able to have sex, use a tampon, sleep well, etc. I hope things will change. Physical therapy will play a small part as well, But hopefully this Nortriptalyine will continue to heal some of my bladder/urethral pain, well worth the drowsiness for me.