My doctors aren't listening - I don't know what to do

[blueturtle]

Hi everyone, I really need some help. I'm almost positive that I have IC, after reading your symptoms. I had about 15 UTIs in a year and was given antibiotics to clear up each infection. Then my cultures started coming back negative, but I still had all the symptoms - with added lower back pain. I've included a list of my symptoms. I've also taken the PUF test and got a score of 19.


• Bladder pain - always, especially after urinating
• Frequency - between 10 and 20 times a day
• Nocturia - normally once a night
• Urinary urgency - it can take 5 minutes for bladder to go from feeling empty to very full
• Back pain - often one sided, although the sides change, sometimes just a dull ache
• Flares up before menstruation - also during periods of stress
• Pelvic tenderness - stomach and bladder area very tender, also lower back
• Nausea - gets worse when bladder pain is worse
• Cannot drink citrus juices, coffee, fizzy drinks - symptoms greatly worsen after drinking
• Sharp pain in urethra - only when bladder pain is very bad

Does this sound like IC? How can I convince my urologist to listen? He saw me for 5 minutes last time and said it was just a phase and that I should grow out of it. This is really affecting my life - I'm scared to go out places if there won't be a toilet. I'm starting uni in a few weeks and I really need a diagnosis.

If you made it through all that, thank you! And thank you all in advance for any advice xxxx

[NotMyCupOfTea]

Wow... another idiot Urologist. This is NOT in your head. I can't believe there are still doctors out there that have this "it's all in your head, female hysterical" attitude.

First things first... PLEASE PLEASE PLEASE drop this guy (preferably on his head) and find another Uro. There are plenty of Uro's that specialize in IC and/or at least know about it and consider it a REAL syndrome.

You are not alone. I started having problems mid June. It's a crazy making syndrome in of itself. You certainly don't need some dark ages Uro to make things worse.

Look at the IC diet..can't hurt to try.. many find relief on it. I know for a fact that coffee sends my bladder into a tail spin.

Hang in there... everyone is individual and some people find relief. It's just a lot of trial and error.

[blueturtle]

I wish I could change doctor! But I'm in the UK and this guy is apparently the best urologist in my area.. thank you for your support, I'm so frustrated - my family are trying to be supportive but I know they think I'm exaggerating too! I'm going to go mad soon! xxx

[statesboro]

I figured I would give you a welcome first of all. I am a male, but I was still diagnosed with IC back in 1997. OK. I know I can't be diagnosing you at all. I'd still think you are having IC as well. I had never heard of 15 "actual" UTIs in a year.(maybe so)Regardless, none of us enjoying having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! If he is the best urologist, then I am glad I don't live where you live. Geez! Oh! IC can affect one's life.(more than some people realize)Of course, you should get more resposes as well.

[Toto]

Welcome!

Is it possible for you to start PT? (Physical Therapy) I just started and many people on this site also do PT with good results. It wouldn't hurt to do the diet too, at least to find some things you can't tolerate and eliminate them. I'm sure there are a few things that bother your bladder.

It definitely sounds like a combination of IC and a pelvic issue. (tightness of muscles) I have almost all the same symptoms as you do. I know others here do as well!

There is NO WAY this is all in your head, though in some sense, all our pain is in our head because that's how we interpret it. (ha ha...trying to make light of this...) It's not your imagination. I SO HATE when people say it's something only in our heads. Makes me nuts! My family doesn't understand the pain, though, like you, they TRY to be supportive. It's hard for them to understand when they don't suffer the pain.

My primary care doctor said urologists usually take 5 minutes with patients. (that's what my first two did) He recommended a Urogynecologist and that's who I'm seeing now and found the treatment to be much better. However, I know some people are very happy with their urologists. If you can find time and can afford it, why not see another doctor. Keeping looking until you find the right one. Honestly, I went to one of the best hospitals in the country 7 years ago (urology dept.) I got diagnosed with Overactive Bladder and was told NOTHING but Interstim surgery would help me. I was prescribed no medicines and was offered no other hope. So I lived with my condition until last year when it became worse. Now I'm getting better treatment. Sometimes the so-called best doctors are not the best for YOU!

[soymilk]

Please do anything you can to switch urologists, this guy sounds like all of the bad uros I had. In my opinion, if he has already started dismissing your symptoms, he will never believe you. You need someone who will help you with this condition, not who you have to fight against.

[earthlady]

Are you able to ask for a referral for a second opinion? Or are you able to go to private care and pay out of pocket? I know it's different where you are for medical care than it is here but hopefully there is a way for you to see someone other than this dr. I'm speechless hearing that a dr. would tell someone that they will grow out of it. Sounds like the diet may really help you since you say you are sensitive to the major triggers. You could also order some prelief to try and read over some of the posts here for self help tips.

[DaniMSC]

If you have to stay with him, start demanding answers. Say "If I don't have IC, what is going on? Why do acidic foods bother me? Why don't the antibiotics make me better? Why did I have negative UTI tests? Why did I have so many UTI's in one year?" Bring him some literature on IC, or better yet, get a copy of one of the IC magazines. That might force him to recognize that this is a major condition with enough people affected to have their own publications with articles written by specialist MDs.

I'm sorry you have to go through this. I've dealt with doctor's kind of like him and when I think about them it still makes me mad. :-/ Hope you can get some help soon. I really think you need to see someone else, because even if he does eventually conclude you may have IC, is he going to be a doctor who will work with you on finding treatments? Not likely if he doesn't believe the disease is real....And him being the 'best' urologist could mean he's the best male urologist and an expert on the prostate etc. It doesn't mean he's the best for women's bladders and their surrounding pelvic organs...

[MaryS]

DaniMSC

WOW these are the exact same words I said to my uro. She had no answer at first and then said you MUST just have food allergies instead of IC. I said oh really??? So I am allergic to coffee, soda, tea, tomatoes, all fruits, spices etc etc. I had 9 DMSO treatments and one heperin instill and I felt no relief from IC symptoms and thats when my uro said that You must not have IC afterall because all my IC patients felt relief after treatments. Thats when I blasted her.

[Sprockets]

Yeah, there's no sense going back to a dry well and expecting water. Once these doctors show that they aren't listening, the only appropriate response is to walk out. I don't feel it's my job to try to educate doctors, and if they wanted to know about IC or any other subject they already would. The information is out there.

If doctors are rude or unprofessional, in addition to walking out I leave a review on Angie's List, and in two egregious cases I filed complaints with the state medical board. I felt I had to do that so others would be warned and maybe not have to go through what I did.

There are all kinds of online sites where we can leave reviews of doctors, and that's the only way I think things are going to change.

[MidnightMoon]

I would demand a second opinion. you deserve good care. I have had it with doctors not explaining things and being dismissive.

[Leela11]

try a urologist who knows about IC

sounds like you have it to me. but I am just a newbie. I live in a place with little medical care and the doctor here just told me "that's what happens as you age" but anyway....I did get a copy of You Don't Have to Live with Cystitis by Larrian Gillespie and she is a specialist practicing in west los angeles and she says that back pain often accompanys interstitial cystitis.

I believe that if we keep working on healing ourselves we can go into remission and live without bladder illness, at least I am hoping so. I hate having to limit my activities due to my bladder problems.

Best wishes to you and good luck too!

[DaniMSC]

Leela- don't want to be a bearer of bad news, but read Larrian's work with caution. Read this article from the LA TIMES re-posted on ICN:

http://www.ic-network.com/newsroom/296.html

She was convicted of at least ten malpractice lawsuits for performing unnecessary back surgeries on IC patients for the money.

[Leela11]

good post

Good point. thanks for mentioning that. I just liked that she had given consideration and thought to IC, but I'm afraid to have things done to my body and was a bit frightened by some of the treatments she suggested in the text.

PS. I have been also having extreme dry mouth lately. Is that related to IC and has anyone found a fungal or bacterial connection?