16 year old with IC, desperately need some advice!

[Jen.75 ICN Member Find all posts View Profile Close Jen.75]

I am 16 years old and I live in Australia. I recently had a cystoscopy with hydrodilation which confirmed what my urologist suspected - that I have IC. I have extremely severe pain, however no urinary urgency or frequency, which she admitted was a strange presentation of it. She wants to start me on Amitriptyline (which i can't have due to conflicting medications) and DMSO instillations. I am terrified of this! I already have too much pain to handle. I won't be able to stand anything else. I am also supposed to see a pain specialist in December.

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Currently on -
Fluoxetine, Oxycodone, Panadeine Forte, Tramadol, Nurofen Plus, Doxylamine and Maxolon.

[Claire_A ICN Member Find all posts View Profile Close Claire_A]

I am 16 years old and I live in Australia. I recently had a cystoscopy with hydrodilation which confirmed what my urologist suspected - that I have IC. I have extremely severe pain, however no urinary urgency or frequency, which she admitted was a strange presentation of it. She wants to start me on Amitriptyline (which i can't have due to conflicting medications) and DMSO instillations. I am terrified of this! I already have too much pain to handle. I won't be able to stand anything else. I am also supposed to see a pain specialist in December.

---

Currently on -
Fluoxetine, Oxycodone, Panadeine Forte, Tramadol, Nurofen Plus, Doxylamine and Maxolon.

Hi There Jen, where abouts in Australia are you?
I am sorry to hear you are in such pain. Pain is my main issue as well. I refused a Hydrodistention though, for fear of making it worse (my urethra is super sensitive). I don't understand why, here in Australia they feel the need to do it as part of a diagnosis, it is cruel and causes more pain than it is worth. I would advise against DMSO and ask if you can do any of the "rescue instills" listed on here, I am not sure if many uro's are doing them here yet but I am sure if yours is an understanding one and you take the research in they would be willing to look it over. A lot people on here have found DMSO has made them worse, it is being phased out in the US I think? The Amitriptyline has helped me with pain in the past. As has Acupuncture, yoga/relaxation/meditation.

Are you on the IC diet? Follow it to the T and it should help reduce your pain. This has helped me the most out of everything. Don't worry, you may be able to add things back in once you start feeling better but stick to it for a good few months.

If you are interested in reducing inflammation naturally try MSM/Glucosamine supplements.
Warm baths also help my pain a lot.

Anything else, give me a shout!

[Jen.75 ICN Member Find all posts View Profile Close Jen.75]

Hi Claire, I live in Melbourne. It's crazy to know that so many others have this as well, for years I thought I was completely alone. I wish I could of refused but unfortunately they have to do that to see how much your bladder can hold and to see if it bleeds when stretched to full. I'm going to try and convince my Urologist not to do DMSO, all I have heard about it is that it either does nothing or makes it worse, and that it rarely give anyone a more positive outcome than negative. I am currently researching the alternatives and it seems that the rescue instills are the most effective. Yeah I see on this site that the DMSO is a more outdated method of treatment.

I'm unable to start the Amitriptyline due to conflicting medications, but my urologist is looking for something else that might help. I haven't started the IC diet yet, I was waiting to see a pain specialist soon to see what they say I should do but I've started started cutting out acidic foods and other triggers. I'm also going to start physiotherapy for PFD.

Thanks for the advice

[Claire_A ICN Member Find all posts View Profile Close Claire_A]

Hi Claire, I live in Melbourne. It's crazy to know that so many others have this as well, for years I thought I was completely alone. I wish I could of refused but unfortunately they have to do that to see how much your bladder can hold and to see if it bleeds when stretched to full. I'm going to try and convince my Urologist not to do DMSO, all I have heard about it is that it either does nothing or makes it worse, and that it rarely give anyone a more positive outcome than negative. I am currently researching the alternatives and it seems that the rescue instills are the most effective. Yeah I see on this site that the DMSO is a more outdated method of treatment.

I'm unable to start the Amitriptyline due to conflicting medications, but my urologist is looking for something else that might help. I haven't started the IC diet yet, I was waiting to see a pain specialist soon to see what they say I should do but I've started started cutting out acidic foods and other triggers. I'm also going to start physiotherapy for PFD.

Thanks for the advice

You could have refused the hydro! Nobody can make you do something that you don't want to! it's a load of rubbish that it is needed, they can dx you on symtoms alone sweetie. When you go to your next uro appointment make sure you are armed with info on the rescue instills ok! Doctors like proof.

Get right on the diet don't wait to see the pain specialist before you comit to diet. In my opinion no treatment will work without the diet. You know those wounds in your bladder? well if it was a wound on your hand would you squeeze lemon into it, or pour hot coffee on it? Nope Physio will hopefully help you also.

please don't do DMSO!

Instead of the Ami could you use pregabalin or neurontin? What med is it that you need to be on so badly that conflicts with Ami?

[Jen.75 ICN Member Find all posts View Profile Close Jen.75]

They can make you when you're 16, same with the DMSO. I definitely don't want the DMSO so you're right I really have to get a lot of info about the rescue instills to show the Urologist.

You're right about the diet, I'm just having trouble sacrificing anything for this horrible condition, even if it's just some food. I have already sacrificed being comfortable, school, seeing friends, and so many other things. I am just starting to get some of it back again and making some plans so I don't lose the things I look forward to later in life.

I'm taking fluoxetine that conflicts with the amitriptyline because together they can overproduce serotonin and cause serotonin syndrome, which from what I've read is pretty serious. The same thing applies from taking tramadol with fluoxetine, but apparently the risk is less because I'm on such a small dose of tramadol. I need the fluoxetine because of pretty severe OCD, anxiety and depression. I just started taking pregabalin and I think that is helping a little.

[Aimz45 ICN Member Find all posts View Profile Close Aimz45]

Hi, I'm from Australia too! (Newcastle).
I really really regret having the urodynamics done (filling up the bladder to see it's capacity etc), it wasn't until I had that done that all my symptoms worsened and became practically permanent. At first it was just a flare up every now and then, feeling completely normal between them, and I could eat and do anything I wanted. Ever since that day I have had vulvodynia, urethral burning, and any exercise or trigger foods cause major discomfort. Even thinking about the fact that I can't take that day back makes me want to scream. So try to avoid any invasive procedures!!

You can not be forced to do anything by a doctor, and if you're worried because of your age, take your mum or relative in with you to the appointment/s.

I'm so sorry this is happening to you at your age, I hope you can get onto something that works for you as soon as possible.

Try bicarb soda in a hot bath, it really relieves any burning. I also sit on a heat bag or ice pack most nights before bed, and am seeing a physio too!

Us Aussies have to stick together on here, it's so hard getting caught up in all the different names of medicines and procedures and what not that they have in America.

Don't hesitate to ask me any questions, we're here for you!

[Jen.75 ICN Member Find all posts View Profile Close Jen.75]

I know, ever since i had the hydrodilation I feel like I have razor blades inside me. The thing is, if I don't do what they ask me to, they won't help me with the things I really need, like pain management and physio. I hope my urologist will be open to ideas about the rescue instills.

We really do have to stick together, Australia is really behind in all IC related things. I was like this for at least 4 years, possibly all my life before I found a doctor that even knew what IC was.

Thanks, it's really helpful to know that there are actually others out there with this condition

[jen74 ICN Member Find all posts View Profile Close jen74]

I am so sorry you are dealing with this. I Also agree with Claire, I would NOT do the hydro. When I was first dx back in 2006 I had a uro who wanted me to do the hydro. I went and researched it and asked a couple of my other doctors( gyne, and gastro doc). They both said NO, do not do it. My gastro seemed very knowledgable on the test as he was a great researcher and he really looked into things. He said it was not the valuable nor reliable. My gyne also said the same thing. She even said that back in the day when they first started doing hydros, they did studies where they would do them on people with normal healthy bladders and then on ones who had issues( suspected IC). Well half of the ones with the normal healthy bladders showed bleeding points and glomulerations. She said that when they over-stretch the bladder beyond it's capacity, well that alone is going to cause some damage, even in the healthiest of bladders. Now when you take a bladder that is already inflammed, it will be much worse.

They diagnosed my IC with just a regular cystoscopy. The urogyne said my bladder was severely inflammed. HE also offered DMSO instills, but I refused those as well. I found a urogyne who would do the rescue instills using only heperain, lidocaine, and saline. I had to stop doing them due to getting too many infections though. But oddly enough, the one thing that helped me was antibiotics(certain ones). I suffered for three years with awful pain and one day I got another infection( and also not all my UTI's would show up on culture either), well an urgent care doc put me on keflex( antibitoic) and within two weeks my bladder ws 90% better. This was after suffering for three years relentlessly. They do not know what causes IC, but I am very certain mine is caused by a bacteria that is very hard to detect and treat.

Again, please do NOT do any tests you do not feel comfortable doing. Besides, that test is not really going to be that reliable. I mean the bladder normally fills at a slow paced rate. What they are doing in very un-natural. It would likely only give false results anyhow and more pain than what you are already in. Why add fuel to an already raging fire is my thought.

Hope you get some help and relief soon. Maybe look for another uro or urogyne or any doctor who will help. I went through quitea few( uro's, urogynes, ) and ended up getting help from a regular Primary care. You just gotta keep looking until you find someone who is willing to work with you.....

Hi Claire, I live in Melbourne. It's crazy to know that so many others have this as well, for years I thought I was completely alone. I wish I could of refused but unfortunately they have to do that to see how much your bladder can hold and to see if it bleeds when stretched to full. I'm going to try and convince my Urologist not to do DMSO, all I have heard about it is that it either does nothing or makes it worse, and that it rarely give anyone a more positive outcome than negative. I am currently researching the alternatives and it seems that the rescue instills are the most effective. Yeah I see on this site that the DMSO is a more outdated method of treatment.

I'm unable to start the Amitriptyline due to conflicting medications, but my urologist is looking for something else that might help. I haven't started the IC diet yet, I was waiting to see a pain specialist soon to see what they say I should do but I've started started cutting out acidic foods and other triggers. I'm also going to start physiotherapy for PFD.

Thanks for the advice

[bigbabybaby19 ICN Member Find all posts View Profile Close bigbabybaby19]

Hello...trying to get info on which IC diet book to purchase...I don't want to waste anymore money with false hope that something will work for my fiance'. I keep reading that the IC diet is important and helps alot. He already has cut ALOT out of his diet but I think we need to properly look at the diet instead of just looking at the good and bad list online. How long does it take to for the diet to show some kind of positive signs? Any info would be great.

[Claire_A ICN Member Find all posts View Profile Close Claire_A]

I am so sorry you are dealing with this. I Also agree with Claire, I would NOT do the hydro. When I was first dx back in 2006 I had a uro who wanted me to do the hydro. I went and researched it and asked a couple of my other doctors( gyne, and gastro doc). They both said NO, do not do it. My gastro seemed very knowledgable on the test as he was a great researcher and he really looked into things. He said it was not the valuable nor reliable. My gyne also said the same thing. She even said that back in the day when they first started doing hydros, they did studies where they would do them on people with normal healthy bladders and then on ones who had issues( suspected IC). Well half of the ones with the normal healthy bladders showed bleeding points and glomulerations. She said that when they over-stretch the bladder beyond it's capacity, well that alone is going to cause some damage, even in the healthiest of bladders. Now when you take a bladder that is already inflammed, it will be much worse.

They diagnosed my IC with just a regular cystoscopy. The urogyne said my bladder was severely inflammed. HE also offered DMSO instills, but I refused those as well. I found a urogyne who would do the rescue instills using only heperain, lidocaine, and saline. I had to stop doing them due to getting too many infections though. But oddly enough, the one thing that helped me was antibiotics(certain ones). I suffered for three years with awful pain and one day I got another infection( and also not all my UTI's would show up on culture either), well an urgent care doc put me on keflex( antibitoic) and within two weeks my bladder ws 90% better. This was after suffering for three years relentlessly. They do not know what causes IC, but I am very certain mine is caused by a bacteria that is very hard to detect and treat.

Again, please do NOT do any tests you do not feel comfortable doing. Besides, that test is not really going to be that reliable. I mean the bladder normally fills at a slow paced rate. What they are doing in very un-natural. It would likely only give false results anyhow and more pain than what you are already in. Why add fuel to an already raging fire is my thought.

Hope you get some help and relief soon. Maybe look for another uro or urogyne or any doctor who will help. I went through quitea few( uro's, urogynes, ) and ended up getting help from a regular Primary care. You just gotta keep looking until you find someone who is willing to work with you.....

It's funny when I first went to my uro she said she didn't want to do a hydro because I was going quite well with pain and did not want to ""make it worse" in her words. When I went back months later in agony and retention she said ok we'll do a hydro now and DMSO (yeah, why?!). I did not go back! She was not willing to do rescue instills on me

I think it is important to try all oral meds first before more invasive procedures, even better, try natural therapies, then oral meds then the instills I totally agree with what you say about the hydro being very un-natural and cause more trauma!

[Claire_A ICN Member Find all posts View Profile Close Claire_A]

Jen75 as Aimee said take a parent or someone in with you if you feel you can not advocate for yourself.

Please do the diet. Doctors may say there is no proof (as doctors like to do) that diet relates to pain, but thousands of us have found it helps and you will find there is much more of a chance you will be more comfortable and be able to see friends and go to school once on the diet. It is MORE than worth it for me.

I was on fluoxetine in my teens for depression. May I suggest hypnotherapy. I had depression and anxiety for 5 years. 3 hypnoetherapy sessions and it was GONE. I have had a few mild flare ups in pregnancy and when I was first diagnosed but aside from that I feel great mentally most of the time The Ami will also help with the OCD and anxiety. I suggest switching from fluoxetine to ami, and give it a chance to help your bladder!

Feeling like a walking pharmacy is never good. Yoga has been amazing for me. I used to think it was stupid, but honestly it helps so much!

xxxx

[Claire_A ICN Member Find all posts View Profile Close Claire_A]

Hello...trying to get info on which IC diet book to purchase...I don't want to waste anymore money with false hope that something will work for my fiance'. I keep reading that the IC diet is important and helps alot. He already has cut ALOT out of his diet but I think we need to properly look at the diet instead of just looking at the good and bad list online. How long does it take to for the diet to show some kind of positive signs? Any info would be great.

For me it took about 2 months of being SO good on the diet. I followed everything on diet listed on this website. I have no IC books I follow everything on this website.

[bigbabybaby19 ICN Member Find all posts View Profile Close bigbabybaby19]

Thanks Claire...also...when you started the amitryptiline what side effects did you experience and for how long?

[Claire_A ICN Member Find all posts View Profile Close Claire_A]

I started on only 2.5mg as I'm very sensitive to meds. I worked up to 25mg over about two months. By doing this my only side effects were sleepyness (first few days) and dry mouth ( once I got 15mg upwards) oh and orgasm took longer. Take it about an hour before you go to sleep. Work up slowly and you should be fine.

[bigbabybaby19 ICN Member Find all posts View Profile Close bigbabybaby19]

Thanks claire!