Doctor says theres nothing more she can do, but i'm in a lot of pain

[emily123]

I have not been diagnosed, and my doctor has said she can do no more for me. This is my story so far.

It started in February this year, while I was away. I was on the train and all of a sudden had a strong urge to urinate. About an hour or so later I visited the bathroom, only to still need the toilet straight after. I was in a lot of pain and constantly needed the bathroom, but when I went little to nothing came out, even though I was drinking a lot of fluids. I once experienced blood in my urine, but that has been the only time to this date. I could not visit my doctor until 5 days later. She tested my urine with a dipstick and said I definitely had an infection, and put me on a 5 day course of trimethoprim. The symptoms cleared up completely.

About two months later I woke up and felt the same symptoms; A LOT of pain, frequency to urinate and burning. The doctor prescribed me the same antibiotics and the symptoms cleared up, but returned 4 days later but very mildly, and went away after 2 days.

However, six or so weeks later, the symptoms returned. It has now been eight weeks and the symptoms have not cleared at all. I was given the same antibiotics, which dulled the pain but did not get rid of the symptoms. There is a lot of pain most days, and every day my bladder feels full and I need to urinate, but nothing comes out. About 1 in 7 days I feel fine, no symptoms at all, but the next day it’s worse again. Some days if I drink a lot of water it seems to go right through me but when I go to the toilet not much comes out. One day the pain was so much that I had no choice but to take a left over antibiotic (after taking pain killers which have no effect), and this seemed to relieve the pain for the day. I’ve given urine samples which come back negative (but show a high count in white blood cells), given blood tests which come back negative, and even had a smear/pap test which came back negative. My doctor says there is nothing else she can do, and gave me more trimethoprim for the pain.

I’m not even sure if I have IC (is there a difference between cystitis and interstitial cystitis?), or if I need more tests, but the doctor will not refer me to a urologist because my test results come back negative. I’m moving in a few months anyway, so even if I do get referred (which takes two months) there will be no point as I will have to start the process all over again in a new city.

I can’t figure out what triggers the flares. I’ve cut out sugary foods, fizzy drinks, caffeine, cigarettes and alcohol, but this doesn’t seem to help. It’s also obviously affecting my sex life with my boyfriend, but I do not think sex triggers a flare. I’ve even tried homeopathic and herbal remedies but these don’t seem to help, although I am still taking them.

I’ve become very depressed, crying frequently because the pain is so much. Any advice, feedback etc would be great. Thanks!

[Smokey]

First of all Emily welcome to the boards. its sounds like you might have ic. you will need to see a urologist and they can perform a procedure called a hydrodestention/cystocopy, this is the way they can diagnose you. please dont worry, go to your doctor and him/her to send you to urologist. also try drinking alot of water, it will help with your pain.

[emily123]

Thanks for your reply. Thats the problem, my doctor will not refer me to a urologist as the tests are negative, and without a referal i cannot see one. Thats the system in the UK! Even though i'm in a lot of pain (and drinking a lot of liquids often makes the pain worse) i cannot see a specialist.

[Wolfe]

I don't know what kind of "test" your doctor is doing, but there are 2 important points about it.

First, there is no urine test for IC. If there are white cells in your urine, something is wrong because that is not normal. And a urine test cannot tell your doctor that you don't have IC.

Second, if you are in pain and showing white cells,and she says she can do nothing more to help you, then the logical next step would be to refer you to a specialist. I've lived in England; I know how it works.

You're going to have to pester her until she refers you. Ask her what SHE would advise you to do. Or what she would do if she were in your place. Also ask her if white cells in your urine are normal or do they indicate a problem. Those questions should lead her to refer you to someone who can help you with your pain.

I wouldn't advise you to ask her about IC. She might take offense at you doing her job for her. Just ask her, if she can't help you, what she would advise as the next step. Be persistant. She'll get tired of you and pass you along to someone else. I've sure had it happen!

Wishing you Wellness!

[ICNDonna]

If your doctor won't refer you, can you change primary care doctors? I think I would. There is a huge difference between cystitis and interstitial cystitis. Cystitis is an infection of the bladder, interstitial cystitis is not an infection. You can read about interstitial cystitis in the Patient Handbook. (There's a link in my signature).

Donna

[SharonA]

Hi Emily...

Have you read the information about the IC Diet on this website? There are so many other foods/drinks that could be causing your discomfort besides the ones you listed. There is a link to the IC Diet in my signature below.

(((Hugs)))

[emily123]

Thank you all for your replies...

Wolfe; Thanks for your help. I'll have to be more persistant, but it always feels like such a waste when i go to the doctors and am told to do another urine culture or that theres nothing more to be done... it gets depressing! Its hard not to ask "but is it this, or i think its that...", and i know many doctors HATE it when patients try to self diagnose themselves... i guess the trick is to be very persistant!

ICNDonna; This is my fourth doctor, i forgot to mention that, but out of all of them, this doctor has done more (rather than giving me antibiotics and sending me on my way!) but if nothing has happened in the next few months i'm moving, so i will have to look for a new doctor anyway. I have read part of the handbook, and will continue reading, thanks.

SharonA; Yes I have seen the IC diet, and am currently trying to start it. But i do LOVE my food, and see something like chocolate and it all gets ruined. Then I flare up again. So this is one thing I'll have to try!

Thank you all for your help

[elitynski]

Emily - I'm so sorry you are going through this. And believe me I know how hard this is. I don't know what I have but it messes with my life, my emotions, and my mental state.

I wanted to encourage you in terms of your thinking - I identify because I've been there. But please find someone you can start talking with and if you are really really desperate than please have yourself admitted to an Emergency room so that they can help you.

I am on some medication for anxiety and depression and the anti-anxiety is helping me while I'm waiting for the anti-depressant to kick in.

I also identify with crying - I have times when I'm in tears quite a bit - in fact I broke down on the phone with my mom last night - it's ok - this is a struggle and it's hard.

There are many helpful people on this board and they really do care. I have found great comfort and encouragement here. I'm a believer that things will improve and you will read many accounts of people here who can attest to that.

My thoughts and prayers are with you - please keep us posted as to how you're doing.

Eric.

[Wolfe]

Emily, if this is your fourth doctor, then you are not a newbie to IC, you are an old pro like the rest of us! I HATE going to a new doctor and starting with your story all over again from the beginning. And I tell them that, so they know that I've been through tests and appointments and they READ MY CHART.

It's such a relief when you finally find someone who listens, and someone who knows what to do. I spent the last year trying so many different meds, and just found what seems to be "the right one." So don't give up. Relief is out there for you, and we're here for you.

All of the hints here will help you in the meantime. And not stressing out helps a lot too, difficult as that is. Take a few deep breaths and hang on!

Wishing you good days and help very soon.

[Wolfe]

Emily, I've been to so many different doctors over the years that I have copies of my medical records at home. I give them to a new doc if I think I'm going to stay with them. So often your records don't arrive before you do, even if you ask for them to be sent.

I also typed up a brief outline of what treatments and medications I've done and when. I give that list to the new doctor.

And I ALWAYS write down the 3 most important things I want to accomplish at an appointment because they start asking questions and get me off track, and I hate it when I leave there and forgot to ask about something that had been bugging me for a long time. For me, it's like going to the grocery store: If it's not on the list, forget it, because I WILL!

[Want2BPainFree]

white blood cells in your urine can be an indicator of a problem even without infection. It is possible that you even have kidney stones or a problem in your ureters or kidneys since you mention you don't pee very much despite drinking plenty of fluids. This is not something that should be brushed off by your doctor. If you can't get help through her/him, demand that you be referred. Some doctors don't understand pain if they have never felt it themselves. Pain is truly an indicator that something is wrong. Do not allow them to defeat you.

[elitynski]

I'm wondering if you could get a URODYNAMICS test done. THat might be helpful. I'm having one next week so I can't really speak authoritatively on it.

[Claredale]

She will have a hard time having a urodynamics test done since she can't get in to see a urologoist.

Emily, like Wolfe said, I would just be very nice no matter how aggravated you are and ask your doctor what you should do next. Something is wrong and you just can't seem to get better.

I hope you will get the medical attention you need and soon.

Hugs, Tracey

[sickofmybladder]

First I wanted to let you know - you are not alone - even in the USA - I went to more doctors than I can count before FINALLY being diagnosed - yes it is extremely frustrating - especially when most of them act as if - there is no way you could be in the amount of pain you are describing -

Be persistant - and educate yourself - definately try the IC diet - what I did initially was only eat/drink the foods on the OK list - I did this for a couple of weeks to give my poor irritated bladder a break - then when I started trying to add in foods - it became much easier to figure out what foods/drinks bothered me.

Also - it might be a good idea to keep a diary - so that it backs up what you are telling your doctor (and to help you get a referral) - In the beginning - I would list: what time I voided, the approximate amount of the void, what I had eaten or drank in between voids, any physical activities I had done between voids and my pain level. I know it seems like alot of work - but I was absolutely astonished once I saw it on paper. I had told doctors I was not having problems with frequency for example - and then all of a sudden there on paper it was clear that I was voiding 20 to 25 times per day - I just never realized that this was abnormal.

I hope you get some relief soon.

[sar99nwb]

Hi Emily

I'm also based in the UK and do understand how you feel about the NHS. All I can say is perservere.

I too started with symptoms of cystitis in February just before a nice break away. I tried the over the counter cystitis medication which has always in the past cleared it up but this time it didn't work. I went to my doctors and she did a dip stick test and said she thought I had an infection and gave me antibiotics. I went on my holidays was quite sick but the pain died down although I still had really bad frequency. My baldder seemed to filling remarkably quickly. Came back from holiday and phoned for my test results and they told me no infection. By this point the pain started to return. I had never felt pain like it. Which considering I have been through in the last couple of years with finding out I have a gluten intolerance is saying alot. The only way I have managed to explain the pain to my husband and my mum is like tooth ache, its completely disabling and you can't do anything but cry.

After getting the negative results, I rang out of hours as I was in so much pain and got a very negative response. Take my mefenamic acid and paracetamol and sit on a bag of peas. I was not impressed but as it was a weekend I had little choice (in the UK doctors surgerys are not open and they operate an oncall system, however its only a phone call and they only see you if they consider it serious). I started doing some research as to what I may have, and kept ringing my doctor. I went to a walk in centre who again tested my urine, no infection and told me there was nothing they could do. I spoke to several out of hours doctors who thought it was kidney related and possible kidney stones. My doctor sent me for tests but while I was waiting for them (soem were a couple of weeks) the pain was so bad my husband took me to casualty. After a 4 hour wait and a negative urine test (surprise surprise) the doctor obviously wanted to get rid of me as she prescribed me antibiotics. WHY. I haven't got an infection. I think this actually made me more depressed.

Anyway had all my tests for the kidneys and they all came back fine. Had tests done by gynae as well and everything was fine in that department as well. By this point my doctors surgery knew me quite well and I spoke to my doctor on more less a daily basis. She was brilliant as she also wanted to get to the bottom of the problem and spoke to an urologist. On my next appointment she discussed interstitial cystitis with me. By this point I told her this is what I too had concluded. I got referred to an urologist and saw my consultant at the beginning of May.

I'm very lucky as I'm in an area where the hospital trust got a 5 star rating and all of the hospital's in the area are fantastic. On the day I saw my consultant he sent me around the hospital doing varioius tests and then saw me after to discuss the results on the say day. In the UK in my experience this is quite rare. The consultant also thought I had IC and explained that I needed to have some tests done to confirm. They prescribed me Amitriptyline 10mg at night and Cimetidine in the mean time.

As I was going on holiday I tried one medication at a time as I like to know what is causing side effects. Didn't seem to get on with the cimetidine so I stopped it and tried the Amitriptyline. I have continued to take it and it does seem to be helping to some degree. My symtoms calmed down to a low level over my holiday and I had my cystoscopy on the 9th July. Unfortunately I reacted very badly to the general anaethetic and I was in recovery for 4 hours. This runs in my family though. They have told me in future they can adjust what they give me so I'm not so sick. I had to stay in overnight as everytime I tried to eat or stand up I wa sick. While I was in recovery they did give me pain relief which was morphine and that was fantastic. The doctor told me that my bladder was really angry and that he had taken a number of biopsies. The pain was really bad after the cystoscopy. I would say for two weeks after I was climbing the walls, and that is when I decided to try the IC diet. It is hard at times as being gluten intolerant as well cuts alot of foods out but am now cooking everything from scratch so its healthier. Do buy white chocolatwe which has always been my favourite anyway. Had my urodynamics last friday and although it was not pleasant I was only in pain that day and I sat on an ice block all day and that numbed the pain. By the next day i felt alot better. The one good thing about the cystoscopy is that its really helped my frequency. I can now go about 5 hours without using the toilet. Theres still pain but at a lower level and I still feel like I need the toliet all the time but I know that my bladder isn't full. My doctor told me that this good as I am training my bladder. At the moment I am waiting for an appointment with my consultant to be diagnosed. From there I suppose we will review my medication.

I just wanted to say Emily I know I have had an understanding doctor but without me perservering and essentially being a nusiance by ringing every day so that they got sick of me I don't think they would have taken me seriously. Unfortunately it seems that the more noise you make the quicker they refer you and the higher up the list you go. Its still taken me 5-6 months to get this far but I consider for the NHS thats good going.

I'm also not sure that if you move you would need to start again. I believe that your records are transferred so that shouldn't be a problem. I don't think the NHS would want to pay for everything twice. I also know you can ask to go and see a doctor in any area now so surely you could ask to go and see a consultant in your new area so you build relationships from the beginning.

I really hope that things work out.

Good luck

Nicki

[emily123]

Wow, everyone has been really helpfull and this is all really good advice and info for me! After reading other posts and from all the replies on this thread, i feel like i have so much support and help, and its really a step in the right direction. Thank you to everyone who has replied.

Today i ate out in a restaurant- obviously a LOT of different ingredients were consumed, and i had a horrible flare up afterwards, not the worst i've had, but i'm still in a lot of pain and discomfort six hours later. I have to kick start the IC diet soon so i know what foods to eat and stay away from!!

I can only wait for a month or so to see my new GP in my new town, and will take all my test results there with me. I've started keeping a food diary, not about toilet visits though, but i've written how the symptoms are in the morning and evening. Until i can get refered to a urologist by a doctor (and i will be VERY persistant. EVERY DAY!) theres not much else i can do but eliminate bad foods that make me flare up.

Also, Nicki thanks for replying because i was honestly starting to give up on the NHS and was considering private/bupa! but now i know that IC is known by at least SOME UK doctors, that has made me feel a bit better about things. Can i ask where you are situated in England? I'm moving to south london in a few months, so i'm hoping being closer to the capital will give me more options with the NHS and such.

Agian, thanks to all that have posted :)

[emily123]

Oh also, i have to add that some days drinking lots of water is fine (ive stopped drinking fruit juices :( but still have cranberry juice some days) and doesnt go straight through me, but on other days it does. And some days theres buring when i go to the toilet, others there isn't. And some days i don't need to pee at all except when i actually DO have a full bladder. It just depends on the day, or of course if i have a flare. Just to add that info.

[sickofmybladder]

Emily -

Cranberry Juice is VERY bad for my bladder - just fyi.

Again - I hope you get some relief soon.

[SharonA]

EKKKK!!! Cranberry Juice!!!! For many ICers, it is like an acid bomb in the bladder.

[emily123]

Yes, i read on the diet list cranberry juice usually promblematic, yet i don't think i have a problem with it. Orange juice seems to be worse for me, and i haven't had apple juice for weeks now... but cranberry seems to be okay... at the moment!

I seem to now live in fear of food now though, this is the problem. Today all I've eaten is toast and butter, but i'm still suffering from the meal yesterday. I'm scared i'll start to develop an eating disorder, as a few years ago i had a big problem with food... nothing major happened, i didn't develop a disorder, but i lost a lot of weight before i realised what was happening. I don't want to accidently slide back into that frame of thought, but instead of thinking of the calories, thinking of the irritated bladder. Thats my only problem... :/

[sar99nwb]

Hi Emily

I'm in Berkshire and have the pleasure of going to the Heatherwood and Wexham Park Hospitals NHS foundation trust. Have now been to 3 of the hospitals in the trust and have been impressed with them all. They run on time and are very friendly and helpful. When I was in hosptial for the cystoscopy and had to stay overnight I was the only one on the ward so got treated fantastically. Nothing was too much bother.

Let me know how things go.

Nicki