New and Confused

[JMOORE0144]

Hey all! So glad to see so many of you!!!!

Well... I was first diagnosed with IC when I was only 7 years old, I am now 20 ... I had the hydro done and IC was the diagnosis ( i started taking Deptoprin??(SP) but it made me sick cuz I was so little so I stopped)... I had problems until I hit puperty, then it seemed to go away and I developed other probelms. I had have had constant yeast infections and UTIs, and told I probably have endometriosis Something was always wrong. I finally went to a uro when my urine samples came back clear of infection.. but i was still having extreme pain in my urethra and my bladder.. and the frequency was rediculous. This was 2 days ago. I was given Urelle, and told my doctor wanted me to have hydro done again.. only this time they would put me out, and given the diet list. I started following the diet immediately since I noticed things already that were bothing me ( i drank a lot of cranberry juice thinking i had a UTI.. needless to say it made things worse!!!). So Ive followed the diet, and I am on Urelle... but my pain is getting so much worse! My symptoms are horrible right now! I called my nurse yesterday and she said to give it a few more days.. I called back again and said my pain is worsening not even staying the same, I am waiting for a call back from my doctor.. But I just dont know what else to do I hurt so bad and I have classes all day, and I am just starting a new job at a bank... I dont know if I shoudl get the hydro done so soon since I have just in horrible pain this past week, but i cant stand the frequency and the pain I cry when i go to the bathroom because I feel like someone is stabbing me. I need some help... badly.... Thanks sooo much

[Danica]

Hi, I completely understand your situation. I was diagnosed January 4, 07 and have been in and out of flares since. You need to deacidify your urine immediately. What I am doing has helped me a lot (I'm still experiencing vulva pain but the burning has disipated considerably).
Maybe you could try this:

Take 3 Prelief tabs (Walgreens has it) at every meal

Drink only Evian water through out the day(there is sodium biocarbonte in it)

Eat only the IC diet foods--NO alcohol, coffees,teas, sodas, fruits and juices

Ask your Dr. to perscribe you meds that will ALKNANIZE your urine

Also, I am currently using Elavil 10-20mg every night to calm spasms and pain

Started Monday Cystoprotek (buy it in IC store)This supposedly will protect and heal your bladder wall. But it may take up to six months to take affect.
Alkanizing your urine is a MUST! Just imagine putting acid on a cut on your knee. It would never heal but just get worse. That is the same with your bladder.

So far it has been the only combo that has worked to lessen my pain. I still have fequency but not as bad at all. We will get through this together. My advice is learn EVERTHING there is to know about IC.

Many blessing and write any time. My email address is
[email protected] golobal.net

Peace
Danica

[meme]

Glad you found us! Sorry to hear you're not feeling well. What's helped the most with me is sticking to the diet and taking Elmiron and Elavil(its a lifesaver!) Hope you feel better soon!

[traceann]

I'd like to add my welcome as well!! Is Urelle the only med they have you on? For me it was the worst right around diagnosis, but once I started on my medications (Ditropan, Elmiron and Hydroxyzine) and followed the diet, things started to improve, slowly - but they did improve.

As for some self-helps while you are waiting on the doctor to get together a game plan for you, you can try a heating pad, or if you need to be wireless, lol, the stick-on heat patches like ThermaCare or drinking a tsp of baking soda in a big glass of water can help soothe an aggrivated bladder (providing you don't have any salt-sensitive health issues) or you can try a couple of Tums. And you can use Prelief (helps reduce the acid in foods) before you eat, that was one thing that went everywhere with me, lol.

I do hope you get some good answers from your doc's office!! Do keep us posted, k? And again - nice to meet you and welcome to the gang!!!

[Georgia L]

I am new here too. It is great to know that we are not alone. I can sympathize with many of the things you have gone thru. Have you gotten any info about Elmiron or any pain meds?

[Georgia L]

Thank you for all of your information.

[JMOORE0144]

Whata night...

Well, I finally got a call back from my doctor's nurse... She said there was nothing more they could give me.... and I definately wasnt having that for an answer so she told me she would have my doctor call me personally. Well it is Friday and 4pm came around and he never called me back. I finally called back the office, crying because I was freaking out from pain. The office was closed until monday. So I had to call the emergency number and some other doctor eventually called me back he gave me Pyridium and Sulfameth...Ive taken these 2 many times for UTIs and i know pyridium does wonders for pain with utis and seems to be helping me out now... As for the Sulfameth... im not sure since its antibacterial... and i have no infection. Im still curious to know what you girls think about Hydrointension (sp?) ? Im definately switching doctors tho...

[traceann]

I personally have not had a cysto w/hydro done, but there are many on here for whom it's helped their symptoms greatly! I would talk to the doc and see what he/she would think and their recommendation etc on the pros and cons of it.

Hopefully some of the gang with more experience with the procedure will chime in!!!! I am glad the pyridium is seeming to at least give you some relief!

[stacyY]

Your so young to be in such a pain and been suffering so long. I am very sorry to hear all the problems.
I too have IC and also Endo. Its not a fun life. I been dealing with mine since i have been about 22(33 now). I have managed to have a few years of remission in between.
A lot of people here gave excellnt advice. I am wondering if maybe you are like me. And it took me a lot of years to figure this out, My pains are at its worse when i have Ovulation.
I too am on Elivil, but on 150mg. And i am taking Flexerel 10 mg both are muscel relaxers. I also take Elmiron 400mg, 2 in morning 2 at night,But the Elmiron takes 6 months minimum to see any responce. some as long as a year. Also I am on Birth control to surpress the fluxuation of mormonal changes. Have no periods drasticaly helps control the pain. I also tried the Lupron shot, I do not recomend it, I gained 40 pounds, be came depressed cried all the time, and started haveing joint pain. When i went off from it, the pain came back 10 times worse. But i stay on the continuous birth control pills. Was working great for a lot of years. But now, I still experiacne the fluxuation, and the flare ups are bad again. So now i am on a hormone relacement pill called Provera.
For about 10 years it was working great. The best way to see if ovulation is playing any kind of a role, even if your on the continuious BC pills, to consider where ur at in the week. If even with your countion, and you feel it still would be the time for ovulation or the time of your period, then, if you notice any pains, or spotting or cramping up, or have a flare up, take not of it and ask your doctor about it.
For me it took like 3 doctors to figure this out, and it ended to be my Cyropractor who was the one who figured it out. But thank god she did. Mad a huge differance finding it out.If you do have Endometriosis, and the IC, I am fastly learning its very or almost impossible to tell the differance between what one is casuing the pain. If you have any type of bleeding, even just a little spotting, the pain is from Endo. If no Blood, then is the IC. Well at least thats what my Ob/Gyn say to me last month.
Also I notices after the Cystoscope, with in 2 days i was in a Huge flare up. It lasted about 2-3 weeks. And I had the Instilations done last summer. I was not diagnosed till Feb 3, 07 of IC. But with the Instilations, which i was told will help, I was to got for 6 weeks, one a week. Well for me it acculy mad the pain worse. and by the 4th week, my Uroligest said that it was not working and it seemed to her was making thepain worse. I took a week off, and then went back. The pain acculy Stoped! So the Instilations do not always work for everyone.
So if a treatment is not working for you dont give up. I know how you feel and most of us are right now in the same situation. Hang in there, and remember it your body if your not happy with the help your getting change doctors. Some times it takes a new set of eyes to really see whats going on. My self i have changed doctors, a lot of times. You have to find one who willbe on your side and who will work for you. You are the customer, and your need to remind the doctors of that.
Hang in there dear. Soon it will pass. Best wishes for a seedy remission.
stacy

[Portia17]

My Best Advice Would Be To Seek A Pain Mgmt Doctor. They Helped Me Alot