I Need Reassurance I have IC/CPPS

[Brett21]

The symptoms started October of last year, i have no real health provider ( no insurance) I'm 21 and still a virgin ( no sexual contact with any human being what so ever).

Now every time i get intense flares i have to go into the ER , i get a bad inflammation in my right testicle as well as pain/burning in my bladder and constantly needing or feeling like i have to go, they usually give me doxcycline which doesn't make a noticeable difference, for the past 5 months my libido has become non-existent cause i associate pain with sex now, and generally discomfort.

I've had been referred to a urologist in may he did a cytoscopy it came back clear , he doubled the dosage of doxycycline and told me to come back in three months to do a follow up.

Now to me it seems impossible for an infection, STI/D, to last a year long. In between flares I have for the past year nocturia , minimally getting up twice a night to use the bathroom. My Mother doesnt seem to acknowledge how severe this takes a toll on my quality of life , in addition to other daily stresses this is the icing on the cake.

I've read about this as much as i can thru the internet and according to wikipedia symptoms include ;

-Pain that is worsened with bladder filling and/or improved with urination.[2]
-Pain that is worsened with a certain food or drink.
-Urinary frequency (as often as every 10 minutes), urgency, and pressure in the bladder and/or pelvis.
-Some patients report dysuria (burning sensation in the urethra when urinating).
-Some patients report waking at night to urinate, hesitancy (needing to wait for the stream to begin), pain with sexual intercourse, and discomfort and difficulty driving, travelling or working.

I have had all of those symptoms , i hope I am 100% wrong on this but I can't seem to find what else i could be that could last a year long?

I would love to get anyones opinion on this ( i know noones a medical professional ) However input is very much appreciated.

[baaaby11]

It sounds like you could have IC but, of course like you said, none of us are medical professionals. You could very well just have a stubborn infection that's difficult to clear up. When you have urine cultures, do they come back with bacteria?
However, it is important to know that just because your cysto came back clear does not mean you do not have IC. In fact, a lot of the time IC is not able to be seen through a simple cysto. Many people on this board have had clear cystos but still have IC. You can do a few things. Go back to that same urologist and talk to him about your concerns and how the medication he gave you is not working. Ask him to do another urine test and have him culture it to see if you still have bacteria. See what he wants to do from there. If he does not want to help you any furthur, maybe you could see a new uro.

In order to diagnose IC, doctors use a couple different tests. One is a Cystoscopy and Hydrodistention. (There's a section about it. This is different than the simple Cystoscopy you had. There are tons of threads here: http://www.ic-network.com/forum/forumdisplay.php?f=56)

Some doctors use a test called a Potassium Sensitivity test. (Read about it here: http://www.ic-network.com/forum/showthread.php?t=60395&highlight=potassium+sensitivity+test)

Then, sometimes doctors do not use either of these tests when diagnosing. They usually do a cysto, like the simple one you had, to rule out things like cancer. Then some diagnose purely based on symptoms. It really just depends on the doctor.

Finally, the easiest (and one of the best) things you can do is follow the IC diet. It is pretty restrictive, especially in the beginning, but it definitely helps many IC patients. And even if you just have a stubborn infection, putting youself on the diet can't really do any harm. (Read about it here: http://www.ic-network.com/diet/2009icdietlist.pdf)

[Garth949]

Hi Brett21

I have all the same symptoms as you have mentioned with a clear cysto. I have been doing instillation for about 1yr now and that has been helping alot. I also have been taking prosed DS and elmerion. My main problem is the burning and the discomfort in the testicles. I'm 23 and I have been having symptoms since I was about 14.

The worst for me is eating spicy food, Chocolate and drinking caffeine and alcohol. It also worsens me if I eat or drink alot of the items on the "NO" list in one day.

Hope this helps
Dx 2006

[ICNDonna]

A cystoscopy done in the doctor's office, without anesthesia, will not usually diagnose IC. I suggest you go back to the urologist (or maybe a different uro) and ask to be tested for IC. It's always easier to deal with something if you know what it is.

Warm hugs,
Donna

[lisabar36]

I agree with Donna. I was told by most of my uros an in office cysto cannot diagnose IC. I was diagnosed by cystocopy under anesthesia, where they actually distend your bladder and that makes IC visible. Good luck.

[Brett21]

Alright , thank you for the opinions , I'm seriously hoping this isn't IC , however when i first started having the symptoms i was following the advice on treating it like a UTI by drinking alot of cranberry juice which made the symptoms alot worse.

is there a way to diagnose it w/o the cytoscopy test , that was painful lol?

[musiclover]

Yep, it sounds like IC. But, I'm not a health professional and you definitely need to get some labs done if you haven't already.

My cysto also came back clear. No inflammation or anything but I have IC. My diagnosis was based on my symptoms, which are: frequent urination, relief of pain temporarily once I urinate, irritation as the bladder fills. Those are my main symptoms.

I know what you mean about being scared it's IC. I was the same way. But it's good to know what you have so you can treat it and be on the road to feeling better. I wish I would have known sooner, but my first Urologist didn't know much about IC and so she kind of waved it off. Then I went to an IC specialist who diagnosed me. If it is IC, you should get on some meds right away. If you don't have insurance, at least look into OTC stuff for now like Cystoprotek and Desert Harvest Aloe or something like that. I like Cystoprotek. I've only been on it a month and a half or so and saw some improvement already. But they say to give it 3 or 4 months.

I hope you feel better soon!

[acapa]

Brett

Get to a Urologist that will give you a general (anesthesia) as there is no reason to be awake for that. The sooner you get it done the faster you can start focusing on your own "flare triggers" and getting to know your body. The diet is a PITA but it a heck of a lot better than pain. If the pain gets bad, see a pain specialist, one who is an anesthesiologist by training.

Good luck

[Jereme]

I would suggest finding a good urologist that will help you develop a treatment plan and potential diagnosis. You do not have to have a cystoscopy with hydrodistention if you do not want to. IC is a diagnosis of exclusion and a functional disorder much like irritable bowel syndrome. Basically that means that you have chronic and persistent pain and dysfunctional voiding symptoms for which no other cause is found. there certainly are findings on hydrodistention that are found in IC, but those findings also can be found with people without IC. Hydrodistention also helps a small percentage of people with their symptoms. The choice to have this or not should be made by you and your doctor. Not all doctors think it is needed. Find yourself a doctor you trust and will work with you to try to find out what is causing your symptoms and help find a treatment plan to bring the symptoms under control. There is actually a more new definition called Urological Chronic Pelvic Pain Syndrome which includes interstitial cystitis, chronic prostatitis and chronic pelvic pain syndrome. All probably are from the same cause.

[lisabar36]

I feel for you taking cranberry pills! Before I was diagnosed all my doctor were telling me to take them. They made my symptoms SO much worse. They made my symptoms increase so much, I didn't take them. I tried them once, and then I tried them a second time, after that second time, I never touched them again.

[lisabar36]

Also, I had my hydro/cysto under anesthesia. You can still have discomfort once your awake but some people get these done regularly to help with there symptoms? They distend your bladder, I know for me, the first few did help, but now they don't help.