To the people here with IC/PBS

[Paso]

Hey there,

This post is first and foremost aimed at people with IC/PBS, but feel free to post if you do not have those symptoms also (I am very convinced I have an inflammation in my bladder). I think it is fairly mild since I do not have too terrible frequency or pain. I can also hold urine (diluted at least) to about 750CC. I am pretty positive I have food sensitivities, and my bladder or that region at least "burn" every day (since my recent flareup 6 weeks or so ago). I do not have horrible pain, but there is some from time to time. I have had this for 5 years now with 2 years being more or less symptom free. The symptoms I have now have never been there before until now which is a real bummer. Now over to some questions that I hope you guys can help with:

Shall I do a cysto? What will it yield? Hydrodistension is not a trustworthy way of Diagnosing IC/PBS from what I have heard.

For you with similar problems, have you found help using the protocol? If so to what degree? I have been helped in the past, but this honestly does not seem to be helped by trigger point therapy...(seen Bill Taylor recently and just came back from seeing Stephanie Prendergast et al in SF for 4 days).

In terms of diet, what do you guys eat? I am trying to avoid wheat, oat, rye etc right now to see if I benefit. I am also sensitive to egg. What do you guys eat in the mornings? I am loosing a lot of weight right now cause I cannot figure out what to eat. I am taking Prelief with all meals, seems to help a little.

I am thinking about trying out some IC meds and supplements. Elavil for a start. Cystoprotek? Bladder Q? Advice here would be useful.

Outcome of IC/PBS? This is impossible to answer I know, but do you guys find help? Can you work? Can you enjoy life? Right now I am pretty sad. I cannot eat or drink much (just drinking water and some milk) and have this burning pain. For the first time in 5 years I have what I would describe as pain, even though it is at a fairly low level.

I sleep all night, most nights without having to pee and for the most I feel good when I wake up. I just hope that last...

Sad

Paso

[graeme]

You say you were not helped by trigger point therapy. Did either of the physios find any trigger points

[Paso]

They found trigger points. Very few (none lately) have had any referal to my symptoms however.

[webslave]

Shall I do a cystoscopy? What will it yield? Hydrodistension is not a trustworthy way of Diagnosing IC/PBS from what I have heard.

Yes, always worth it IMO because it can rule out a myriad of other problems.

In terms of diet, what do you guys eat? I am trying to avoid wheat, oat, rye etc right now to see if I benefit. I am also sensitive to egg. What do you guys eat in the mornings? I am loosing a lot of weight right now cause I cannot figure out what to eat. I am taking Prelief with all meals, seems to help a little.

Hey, I'm trying to lose weight and all I eat is chicken, vegetables like sweet potato and beans (and other greens), rice (plain boiled rice, rice bread and rice pancakes), margarine, jam, oil, peanut butter, bananas ... that's about it. I love it all, eat heartily, and my wife has accustomed to this limited palette. With the chicken, veges and rice meals, it's important to make a gravy with things like citric acid, brown sugar, dash of Tabasco, salt, rice flour.

I am thinking about trying out some IC meds and supplements. Elavil for a start. Cystoprotek? Bladder Q? Advice here would be useful.

Elavil is a must, very useful for IC-type symptoms for many men. Cystoprotek and Bladder Q are no better than the Quercetin suppliers products, and I believe they may be poorer products quality-wise.

Outcome of IC/PBS? This is impossible to answer I know, but do you guys find help? Can you work? Can you enjoy life? Right now I am pretty sad. I cannot eat or drink much (just drinking water and some milk) and have this burning pain. For the first time in 5 years I have what I would describe as pain, even though it is at a fairly low level.

Cows' Milk? I don't touch it. It always gave me symptoms. Now the most I have from dairy is a little Parmesan with my rice flour-based quiche, once in a while. Use rice milk, or soy milk.

[Sleeper Service]

Two things are apparent here:

1) You're having a flare up.
2) You're catastrophising.

There is no point guessing what you may or may not have. If you think you have IC then get a hydro with distension or potassium sensitivity test or whatever if it makes you feel better.

Of course, what you may be better doing is just trying things like Elavil or other treatments and working with your doctor to see what works for you just like the vast majority of IC/PBS patients do and who live pretty normal lives.

Personally I just think you're flaring. chronic prostatitis / chronic pelvic pain syndrome is a notorious for waxing and waning - if you look at the past posts there are many people who have had a few bouts although the secondary ones are usually shorter and less severe. Check Richard N's posts for good examples.

You need to stop winding yourself up. It's not helping.

[Paso]

Sleeper, fair points. I wonder however what you are basing your facts about people with IC/PBS living normal lives? From what I have read on this site and the IC forum, that is not the case. Look at Kevin, Strobers etc. Looking at your symptoms you do not fit this category and probably does not know what it feels like. No offense..

[Sleeper Service]

Paso, mine do fit in with the category you mention. You should also realise that Internet Discussion Forums are not typical of the patient population at large because most of the people there - or especially the posts you're most likely to notice - are posting at their lowest ebb. Typically if you track back a year or two and find someone who is in a deep panic you'll find that as time goes by and they find a treatment that works they become more positive, state they feel better and then disappear. Some will, of course, come back as things flare up again.

The vast majority of chronic prostatitis / chronic pelvic pain syndrome and IC symptoms can be kept in check or controlled with a variety of treatments. Not all, but the vast majority. Check Shoskes, Moldwin and others for details.

[Paso]

Fair point. Thanks

Paso

[Sleeper Service]

No problem. I know it's difficult but you need to relax a little.

My symptoms have definitively improved over the two years I've had this. In fact, I was in Italy on holiday the week before last and away in Ireland last weekend on a stag do. Whilst in Italy I felt the best I had for two years with little or no symptoms although I suffered a bit - although nothing in comparison to 2006 to mid 2007 - when I came home as I had the runs from too much rich food. I'm also feeling a bit sore today because I have what is commonly known as 'Guinness Arse' . This too will pass.

My symptoms are mainly now a swollen feeling in the urethra, a bit of suprapubic burning and, at the moment, a slightly sore and burning perineum. They continue to improve with supplements, relaxation and exercise.

[strobers]

In my opinion, the best way to deal with IC/CPPS is to confront symptoms on both ends. I have heard people state that it's the pelvic muscles that cause bladder problems and other people say that problems with the bladder trigger the problems with the pelvic muscles. Since nobody knows for sure, the best thing is to treat both the bladder and the pelvic muscles at the same time because in essence they are all connected.

Based on my personal set of symptoms I take supplements geared towards the bladder; Cysto-Protek, Aloe Vera, Bladder-Q, pharm grade Fish Oil, and follow the IC diet. At the same time I spend a lot of time stretching and doing relaxation exercises, of which I do many, along with taking Elavil, which is the best thing I'm taking at the moment for this problem. The last few days I have mainly only been dealing with frequency; every 45 minutes to an hour I feel a need to void, but I make myself wait for at least two hours so I don't condition my body to go more frequently. I haven't had any burning or irritation unless I sit the wrong way or move my body in a particular way. I attribute this at least in part to addressing all sides of the issue.

I was talking to a newbie on the IC board and he has a lot of the same symptoms as me and I found out that he hadn't made any diet changes. I told him that if he is still drinking soda and coffee then he is just going to cause more problems for himself. In my opinion, diet is one of the most important things to follow, not just to keep the bladder from getting irritated, but to strengthen the immune system.

I think it's smart to approach this problem as comprehensively as possible, which entails treating both the bladder and the pelvic floor simultaneously.

[Paso]

Strobers, I think you are right in your approach. I will add some meds and continue with TP work and also get dilligent about relaxation again. Daily for 20 mins.

In regards to Elavil, someone mentioned a more "modern" alternative? How long will it take to see if Elavil works or not?

Thanks for all the replys

Paso

[carld]

Elavil worked right away with me in terms of calming the nerves down in my pelvis and easing my anxiety and helping me sleep and slowing the frequency. I only used 10 mg and I'm currently on 1/2 of that for the last 2 weeks. My body is adjusting right now to this very low dose. I'm a big Elavil supporter. It is a mast cell protector.

[Paso]

I have noticed that when I burn in my suprapubic region and I lie down on my sofa or bed, the burning goes away completely. Anyone noticed the same? Is this common? Does it speak for muscular issues rather than bladder issues?

Paso

[webslave]

In regards to Elavil, someone mentioned a more "modern" alternative? How long will it take to see if Elavil works or not?

I would go with Elavil (amitriptyline). The newer drug, mirtazapine, is not so good IMO. But try it only if amitriptyline does not help (give it a month at least).

[kevin]

Paso, you might want to try bladder anesthetic instillations as well. I tried them and got a bit of relief (though not enough to keep doing them). Some people have more success. The IC network admins seem to be really gung-ho about them, probably because it's easier for a woman, anatomically speaking ... :)

Bladder Rescue Instillations
The most promising development in the past ten years in treating IC is the development of "rescue" instillations (aka rescue cocktails, anesthetic cocktails or a therapeutic solution), a customized solution that can be placed in the bladder to immediately help reduce pain and discomfort. Though it requires a catheter (don't let that stop you!), these instillations can be used in the doctors office, at home, and even by children.

Rescue instillations are designed to help restore the mucous in the bladder, to fight pain and inflammation. Many doctors and clinics have created their own custom formulas for this purpose. The core pain fighting ingredient is usually an alkalinized local anesthetic, such as lidocaine or marcaine. Elmiron or Heparin are included in most instillations because they are believed to help restore the bladder mucous and to create protective barrier in the bladder. Many physicians also include a corticosteroid to help control inflammation, as well as an antibiotic if infection is an issue.

In 2005, Dr. Lowell Parsons (UCSD) released the results of a study which found that 94% of patients receiving a 2% lidocaine instillation reported immediate symptom relief after one instillation. 80% of those patients had sustained relief after a two week period. Dr. Parsons concludes "Intravesical treatment with combined heparin and alkalinized lidocaine immediately reduced the pain and urgency of IC in most patients treated for newly diagnosed IC. Symptom relief lasted beyond the duration of the local anesthetic activity of lidocaine, suggesting the solution suppresses neurologic upregulation."