Getting desperate and panicking

[Emilys mum]

Hi,

I found this site when I was trawling through the internet a few weeks ago trying to make sense of some strange problems I was having. A month ago I had a uti, well I assumed it was a uti, I went to the doctors like I ve done lots of times and was prescribed anti biotics as usual, although they have never done a urine test on me. Nothing out of the ordinary though. But the anti biotics did not seem to work as fast this time and I felt that the pain in my lower abdomen and pelvic area never really went away.
so I starting googling and found interstitial cystitis which seems to fit some of my symptoms, which are frequency, and pain in my pelvic area, and urine buring slightly. Weirdly enough i was on holiday last week in spain and the symptoms dissappeared entirely, but came back when I arrived home in the uk. Bottled water maybe? I drink tap water at home, PH 5 but onyl drink bottled water on holiday.
Trying not to panic when i read how much pain interstitial cystits can cause, I am trying to be pro active and immediately switched to the ic diet on mon this week, but my symptoms seem to be worsening. I had blue berries yesterday afternoon as a snack, but 2 hrs later found quite ill and have not felt better since really. I also felt bad after eating eggs and rice and bread.
I have some urine testing strips in cupboard so testing my urine it showed positive for blood and some Leukocytes but not much else.
I have a doctors appointment next week with my gp but I am guessing in the five mins alloted to me I will just be prescribed antibiotics again.


.

[ICNDonna]

If your doctor suggests antibiotics, I suggest you ask to have a urine culture to be certain you have an infection and that the most effective antibiotic is being ordered. It could easily be that your problem is an infection and not interstitial cystitis. Even if it does turn out to be IC, most ICers do find effective treatments.

Sending healing thoughts,
Donna

[leelee88]

I agree with Donna,

Hang in there and hopefully you will get some answers soon..
And remember we are all different, Some have more pain than others.. And some people go into remission..Hugs

[Emilys mum]

So I ve spent the last few days reading as much as possible about IC and I am just waiting to see what the doctor says on wednesday, I am hoping it is a uti but the pains keep coming and going then coming again!! At the moment I am having terrible trouble actually starting a stream on the loo, having to wait 3 mins or so each time and even then it stops and starts constantly. Also had bad burning. But at least the pelvic pain has subsided!!

Sorry that my first post was so panicky, one of the first things I read about IC was that the pain can be worse than cancer pain. I read this and panicked, imagining myself getting worse everyday, thankfully this has nt happened.

I have started only eating foods of the IC diet list and taking D mannose (in case it is a uti), I figure that even if I dont have IC doing the diet is nt going to harm me and I do actually feel a little better (fingers crossed)

I am seriously craving sugar though.

[earthlady]

It's so hard at first to not panic. I did the same thing in the beginning and worried myself into sheer panic attacks. I do believe my anxiety made the pain worse. My GP gave me some Ativan temporarily, as my anxiety was through the roof and I'm so glad she did. After a while as I saw that it wasn't getting worse and found ways to get through the flares and also found meds that helped I calmed down and my anxiety did too. Wishing you good luck.

[meResque]

Give in to those sugar cravings lady, if it will calm you down!

Most of us do sugar with no problem, barring other medical issues like diabetes.

/walks away to go eat some peanut butter cookies...

[Mothergoose]

There is no reason not to eat sugar like meResque posted unless you have problems with sugar too.

Which I do, I satifie my sugar craving with a bit of splenda and it doesn't bother my bladder.

I also have read other can tolerate splenda.

MG

[JustmeGemmy]

I don't have much advice to offer, I can only echo what others have said regarding the urine samples. I went through 6 months of being on & off antibiotics & yet I had no infection! Now I'm not sure if any of these antibiotics will work for me in the future.

I really hope you get some answers x

[JustmeGemmy]

So I ve spent the last few days reading as much as possible about IC and I am just waiting to see what the doctor says on wednesday, I am hoping it is a uti but the pains keep coming and going then coming again!! At the moment I am having terrible trouble actually starting a stream on the loo, having to wait 3 mins or so each time and even then it stops and starts constantly. Also had bad burning. But at least the pelvic pain has subsided!!

Sorry that my first post was so panicky, one of the first things I read about IC was that the pain can be worse than cancer pain. I read this and panicked, imagining myself getting worse everyday, thankfully this has nt happened.

I have started only eating foods of the IC diet list and taking D mannose (in case it is a uti), I figure that even if I dont have IC doing the diet is nt going to harm me and I do actually feel a little better (fingers crossed)

I am seriously craving sugar though.

I just wanted to add that your pain might not get that bad. I don't have any pain atm (I've not been diagnosed with IC, although my symptoms fit nothing else). Try not to worry too much about the pain you might have in the future, because you might not have it

I am dreading trying the IC Diet. My IBS has gotten worse lately,as has my bladder. Bah! I just want to eat chocolate! Lol

[Emilys mum]

Well I gave in and ate a fab piece of carrot cake from our local baker and dud nt feel any worse!!

Been to GP, who was surprisingly nice, she did nt prescribe antibiotics has sent a sample off to be cultured instead. She said it could be ic or overactive bladder, but we need to rule out infection first. She had a book on ic in her room, hopefully she's read it. Lol.

In the meantime I am still on the loo every 40 mins to an hour, sometimes every 20mins, but the d mannose has helped with the burning sensation when I urinated so that's good. I stopped taking d mannose and the burning came back, and went away when i started taking it again so it must be helping. Just keep getting sharp stinging pains low low down in pubic area.


Hope everyones doing ok today

[Eline]

Seems like you're lucky with your GP. Hopefully, you'll receive good care soon and are doing better now. In the meantime, take care!

[Emilys mum]

Must have caught the GP on a good day last time as today she was was really unhelpful at my follow up appointment. She told me my urine sample results were completely normal, nothing unusual at all so therefore I dont have IC. I asked why and she said if I had IC i would have blood in my urine or mucus.

Is this true? Can anyone help me? I am now being tested for coeliac disease!!

My symptoms are mainly frequency, I go every hour or so and a couple of times at night time, sometimes a slight burning sensation, and a general tenderness in the whole area. The worst thing though are the stabbing/stinging pains I get in my pubic area very low down on the left. Does this sound like IC? Being intimate does not cause me any pain and in a voiding diary I started to keep, my average void is between 350 and 400 ml.

Could I have IC even with a normal urine test?

I dont know where to go from here, as I am in the UK and its not that easy to change GPs.

I would grateful for any advice.

[earthlady]

I'm pretty sure there have been a lot of people with normal urine cultures who have been diagnosed with IC according to the new current guidelines. I guess it depends on what your dr. is using to diagnose. Even with the new guidelines it looks like many drs. are using their own criteria. My first uro told me after the cysto that it was not IC because there were no ulcers or pin point bleeding (old diagnostic criteria) yet the third and final dr. I saw said it most definitely is IC based on symptoms. It gets pretty frustrating in the beginning due to so many different opinions. They also want to rule out other things first before they give you the diagnosis.

[sailawaygrl]

The Drs here in the US do not go by that. In fact most of us have perfectly normal urine, which is one of the first tips that we might have IC. Symptoms that don't seem to have infection as a cause. Celiacs? I am not sure about that, I am not very familiar with the symptoms.

Check in my signature below, you will find a link to the American Urological Associations new guidelines for diagnosing and treating IC. Keep on with the IC diet even if the carrot cake didn't seem to cause problems. It can help calm your bladder in any case, IC or not. If your bladder is inflamed you need to baby it and help it to calm down.

Back to the urine, some of us do have visible blood and some, like me, have microscopic blood. I would be willing to guess that just as many have no blood or mucus in their urine.

Can you see another Dr? Request to see a specialist? I will never understand sending someone for a million tests as a "cost" saving. Try taking the guidelines and the info you have found on your research and present it in a very non confrontational manner. Many Drs don't like it when patients "self diagnose", even though that isn't what you are doing, there is a chance she will interpret it that way. I don't see educating yourself as self diagnosing but I have run across Drs that groan when you mention that you did some research. I left and found another Dr.

Good luck to you.
Sandra

[sailawaygrl]

Wow, didn't see Earthlady's response until I posted, sorry for overlap in advice, if any. She is right though, many Drs have their own ideas about IC and many don't even believe in it. The book about IC isn't a good indicator unfortunately, my first uro had one too and I felt encouraged. He was terrible and heartless. Treated me like I wasn't telling the truth.