A very slow diagnosis

[Han]

Hi everyone,

Although i have not been officially diagnosed with IC my original doctor looked it up on google while i was in the office! Ever since then i have been looking into it and im now pretty sure its IC even tho my doctors are not.

Im 22 and I have been suffering from 'cystitis' for the past 4/5 years. Every time i went to the doctors about it they would give me some antibiotics and take a urine sample (which always came back negative) and tell me to drink lots of cranberry juice. I stopped going to the doctors about it for a while because i knew that they would just chuck some antibiotics at me which never worked. Then about 2 months ago i got 'cystitis' really really badly, there was lots of blood whenever i went to the toilet and after spending 2 days glued to the toilet with a hot water bottle attached to my tummy my mum got me an emergency appointment at the doctors. As expected they sent me away with some antibiotics and told me to wait for the urine test results. They came back negative but this time because there was so much blood thankfully they took me seriously.

I have since been sent to see a urologist and he has ruled out any other illnesses through swabs, ultrasounds, xrays and examinations and says the next step is he wants to get me in for a cyto. Does this sound like he thinks it could be IC??
He is booking me in for the cyto in the next week and i really dont know what to expect. He is booking me in as an outpatient does this mean they use any anesthetic?? Im still really struggling it feels like someones punched me in the stomach and everytime i go to the toilet its agony. Im so scared this procedure is going to make it worse.

I have started following the diet cheat sheet from here i need to do something as all anyone so far has told me to do is to take regular painkillers?? ha! Im off work the pain is so bad and although my mum is being so brilliant it sometimes feels like nobody takes IC seriously. As soon as people hear cystitis they think they know how you feel. Ive been with my boyfriend over a year and although he is being supportive via text message he seems to be avoiding visiting me. He has been to see me twice for 5 minutes in the last 3 weeks and is blaming being busy with work, but before i got ill we were together everyday. Is it normal to feel so alone?

:bonk:

Any help or advice would be brilliant. I am so grateful for this site as even if i dont turn out to have IC this site has been a great support so thankyou!!!

[VickiB]

I'm sorry you're going through this!

My IC symptoms began back when I was in high school and I can really relate to your words, I stopped going to the doctors about it for a while because i knew that they would just chuck some antibiotics at me which never worked. I did the same. My tests came back clean and I really thought I had some sort of infection that defied all their testing methods.

It's good you're watching your diet. It can't hurt and it might help if it is IC you're dealing with. You might also try the OTC bladder meds like AZO or Uristat. They're not for long term use but I resort to them when I just need to take the edge off.

Is it normal to feel so alone? I think, unfortunately, yes. I guess any kind of prolonged pain has a way of isolating people. We also tend to find out who our fair weather friends (and family) are.

But,...if it is IC, I want you to know that most of us get better following diagnosis and treatment! For me, IC rarely impacts my life to any great extent now.

Hang in there!

Vicki

[mlzippy7]

Just wanted to say hi and :welcome:!
I hope you get the answers you deserve!

[VCNJ84]

I just wanted to say hi and give you a big cyber hug!

I am still undiagnosed and seeing doctors myself so I don't have anything to contribute to the testing process...but I am also in my 20s and have always had vaginal problems, so I can relate to being young and ignored cause of the healthy exterior.

I have been given wrong anti-biotics many a time...and been laughed at by witchy ER nurses.

It really sucks to not be believed and I hope your test goes well and someone will start giving you both the respect and treatment you deserve.

[Goldfinch]

Hi, it sounds like they didn't tell you what procedure to expect. If you have never had any type of cystoscopy, and if it's scheduled in the uro's office, it is probably what we call an in-office cystoscopy. Why don't you call the office and ask what test they are doing, just to be sure? There is also test called a cystoscopy w/hydrodistention. That one is performed at a surgery center or hospital under general anaesthesia.

An in-office cysto is a fairly simply test to rule out bladder cancer (very rare), bladder stones, or to possibly see if there is any visible irritation or signs of ulceration. You will get some numbing gel, and they will insert a catheter. The doc will take a look with a camera. Then a water solution will be injected, you won't have to hold it for long, and you be able to get off the table and pee fairly quickly. Everyone is different, but I had only a brief stinging sensation from the catheter, and the rest of it was not very uncomfortable. This test is not diagnostic for IC, and it isn't unusual for an IC bladder to look healthy in an in-office cysto.

You might wish to ask the doctor for a prophylactic antibiotic such as levaquin on the way out the door, since any time you are cathed there is a risk of infection. Also ask about some pain-killers such as pyridium (Azo), prescription Urelle (read up on urinary tract antiseptics on these boards) since you might have some increased discomfort for a couple of days after the test.

At least this doctor seems to be taking you seriously. Anyone with a history of UTI symptoms and negative cultures should be getting more than just antibiotics thrown at them!

[Han]

Thankyou everybody for your replies, support and cyber hugs :)
I can only repeat what everyone thinks but this place is amazing an absolute godsend especially at 3am when sleep is not even an option! so thankyou everyone. Its really good to know we are not alone.

I have one question which perhaps i should be posting elsewhere but lots of people are talking about uristat and AZO?? are these not avaliable in the UK as nobody seems to have heard of them:confused:

xxxxxx

[Goldfinch]

Perhaps some Brits will chime in here; I don't know what's available across the pond. Azo Standard and Uristat are otc meds with one ingredient: phenazopyridine. Urelle, Uta, Prosed and Utira C are all prescription meds knows as urinary tract anitiseptics. All of them have a dye that works as a painkiller; phenazopyridine stains yellow and is not recommended for long term use, but can be a life-saver. The UTA's have a chemical that stains blue. Check out the threads under the relevant topic in the forum "Treatments for Mild IC."