Does Cystoprotek or Algonot help with urethral burning?

[MelindaP]

I am talking burning/irritation that you feel all the time in your bladder base/urethra, not just when you urinate. I tried 2x to take calcium Citrate that other people have said helped their urethra, but I got bladder discomfort from it. I have no urgency/frequency, just this darn constant urethral irritation! I am on Elmiron 200mg 2x a day, 20mh hydroxizyne & 30mg Elavil. I have gotten much better since3 last year but am looking to make this lingering irritation go away! I also follow the IC dirt.

Thank you!

Melinda :)

[ICB]

Hi Melinda:

I have spoken to many IC patients with urethral burning; I have found that many of those patients do best on a combination of CystoProtek and Desert Harvest Aloe Vera. CystoProtek may help to rebuild the bladder lining and the quercetin in the product may protect the bladder from further damage associated with mast cell degranulation. You can find more information on CystoProtek at www.algonot.com.

Desert Harvest Aloe Vera (www.desertharvest.com) has been shown in clinical trials to reduce frequency, burning, and pain. This Aloe Vera does not contain citric acid and is IC friendly. Moreover, Aloe Vera is a great anti-inflammatory.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best regards, ICB

[kimmichele]

I have been on Cystoprotect for about a week. I am up to six a day. It is too soon to tell, but I am having a very good day. I drank decaf caffe latte, which usually gives me some frequency and irritation even tho it is decaf. I can only drink it on good days. I went to bathroom a few hours later and did not "feel" the urine coming out which is strange. I have been so bad that many supplements or other natural aids have irritated me. But the cysto protect doesn't bother me at all. I'm hopful...
Kim

[MelindaP]

Kim-

That's wonderful!!! PLease keep me updated! Did you get it from the ICN store?

Thanks!
Melinda :)

[MelindaP]

I went to the ICN shop & they just have the Cystoprotect 5 in 1, is that the same as just cYstoprotek?

Kim- How are you feeling?

Melinda :)

[hoping4acure]

I have been on the Cystoprotect 5 for over a year now.

I started out (first 3 bottles) taking (2) 3x day and I am now taking (2) 1x day. I buy it from the ICN store.

It has helped me, I can't say it has helped with burning though. I didn't (don't) get burning that often.

[kimmichele]

I to the cystoproteck for the algonot web site. I am sure it is the same thing. I was sure it was helping but that night I woke of with pain. I think it was because I took my supplements - cystoprotect, natural tyroid, progesterone right before bed without any food (no dinner) just 1/2 a pecan sandie cookie and some parmesian cheese. I woke up at 3:30 with pain, drank some lemon juice and put some capscian creme over pubic bone. At 4 the capacian was buring so much I got up several times to put aloe vera on it. but it seems to scamble the pain signal from the uretra. I finally got back to sleep by five and slept for 3 hours. I am back to my anoying medium urethral pain. They say the cystoproteck takes 6 months to work. But I did really feel good on Saturday. But I have to take it with meals.

I felt really crummy Saturday - like my fibro was flaring, which I hadn't had in nine months. ThenI took some tylenol and a nap and felt better. I almost wonder if toxins from urine are seeping through the gag layer and getting into the blood stream and this cause the fibro flare.
Kim

[kimmichele]

Excuse me I meant I felt crummy on Sunday - after I had the flare during the night early sun morning.

[MelindaP]

I am sorry to hear that Kim.

I hope you are feeling better soon!

Melinda :)

[boohiss13]

I to the cystoproteck for the algonot web site. I am sure it is the same thing. I was sure it was helping but that night I woke of with pain. I think it was because I took my supplements - cystoprotect, natural tyroid, progesterone right before bed without any food (no dinner) just 1/2 a pecan sandie cookie and some parmesian cheese. I woke up at 3:30 with pain, drank some lemon juice and put some capscian creme over pubic bone. At 4 the capacian was buring so much I got up several times to put aloe vera on it. but it seems to scamble the pain signal from the uretra. I finally got back to sleep by five and slept for 3 hours. I am back to my anoying medium urethral pain. They say the cystoproteck takes 6 months to work. But I did really feel good on Saturday. But I have to take it with meals.

I felt really crummy Saturday - like my fibro was flaring, which I hadn't had in nine months. ThenI took some tylenol and a nap and felt better. I almost wonder if toxins from urine are seeping through the gag layer and getting into the blood stream and this cause the fibro flare.
Kim


I'm sorry to hear you aren't feeling well, Kim! I hope you start feeling better or do by the time you read this!

My Uro has just told me to start taking Cystoprotek and the dried Aloe Vera pills.

So, how do you suggest I start....what are you doing right now? And you say it's best to take them with meals?

[sami4]

Dont mean to insult anyone, but have you considered that maybe some of the urethral pain could be diet related? I notice you said parmesan cheese which can be a trigger for a lot of us? Have you ever tried to notice what you ate and if there is a correlation to your bladder symptoms?
SAmmie

[MelindaP]

I follow the IC diet pretty strictly & still have constant urethral pain/irritation. I drink TONS of water as well. Dr. Moldwin will be doing a scope on me on Monday so hopefully he can pinpoint exactly where the irritation lies. But I know it is not being caused by diet.

Melinda

[kimmichele]

I follow the diet pretty strictly, but I do cheat some. Aged cheese doesn't bother me too much, but I'm sure the parmesian cheese did.

I have been doing the diet so that that sometimes I just go crazy. I have been feeling very well during the day - just some irritation at night because I take the progestone.

I seem to go about 3-4 days with little daytime pain. LIke this weekend I had some popcorn at the movies because we hadn't eaten lunch. The I had some cookies before bedtime - not good either. So i had some pain today - also had to get my mammogram which was stressful.

I can get the pain almost down to nothing if I do lowcarb/ic diet/food allergy diet (my elisa test results)/low oxalate diet. I just can't last very long. Once I did it for 14 months and got completely symptom free - of course I was really constipated - I ate a lot of mozzerella cheese and even pork rinds. uhg. When I added back bread, etc the flair ups came back. I get cravings, the diet is hard to stick to year after year.

Tonight I will douce with medicated douche (this works for me) and take a muscle relaxer. I have been having trouble sleeping because I am trying to reduce the progesteron (it is an irritant) but of couse the lack of sleep doesn't help the urethra. Sometimes you're damned if you do and damned if you don't. I haven't had a soda pop (except for little sips and a few times when I was in 3 year remmission) in 25 years.

And If I got well - I still wouldn't drink soda. Our bodies were just not meant for these chemical concoctions we eat/drink today.

Kim

Kim

[MelindaP]

Hey Kim!!!

I just saw Dr. Moldwin yesterday for the scope. It really wasn't bad! His hurse used tons of Lidocaine, so I did not even feel the scope going in! I am a little more irritated today, butthat is to be expected I guess. He saw exactly where I suspected the irritation was. It is right where the bladder & the urethra meet & close. He said I looked a little redder in that area. My bladder looked good. Of course it has always been my urethra that had bothered me. I knew it had to be higher up because thew few times I used lidocaine on my urethra, it did nothing! He is trying me on Flomax (a medication used for men with Prostatitis). Apparently this reduces the bladder neck. He wants me to try it for a week, He said he is not sure if it will help me, but wanted me to try it. If it dosen't work, he has a pharmacy in Rye, NY that compounds special urethral suppositories for him. They are comprised of Lidocaine, a antibacterial & a steroid. He said that his patients have had very good results using them. He said you do it 3x a week for 4 weeks, then taper off (kinda like the installations). I can't do it myself though, the though freaks me out! But the nurse of the uro I see here would probably do them for me.

You said something in your earlier post about the progestrone you take at night making your urethra more irritated. I have always felt my hormones played a big role in this because whenever I would get this "stingy" sensation in my urethra, it was always a few days before I would get my period. It would go away when I got my period. Now I am nursing, so of course m,y progestrone is still very high. I wonder if that is why my symptoms are continuing??? Something to think about!

Melinda

[boohiss13]

Most of my pain is in my urethra too; but I've never heard of the scope you had done or the urethral supposotories.

Could you expand on what all that is?

[MelindaP]

Hi!

The scope was the Cystoscope. You know, the one wher they put that catheter with the camera up your urethra so they can look at your urethra & bladder. THey also fill your bladder with water so they can expand it & see your bladder walls. This is done in the office with Lidocaine to numb the urethra. The suppositories are something that I think just DR. Moldwin is doiung for his patients with urethral pain. He has them specially compunded at a pharmacy in Rye,NY. In fact, I called my local uro's nurse to see if she could do them for me. She had never heard of urethral suppositories or how to do them, so she is going to call Dr. Moldwin to find out how to insert them. I am too chicken to do them myself! I'll keep you all posted how they are working. I know someone on this board (I think it was under "urethral Success" in the remission board) whoes Homeopathic uro was doing something similar. Injecting a lidocaine like substance into her urethra eith a syringe. She got a lot of relief from it. These suppositories have a steroid, so they should help to reduce the inflammation.
Melinda

[kimmichele]

I woke up at 4:30 am with pain. I ate too much aged cheese yesterday, plus stirfried shrimp with a little soy sauce, ginger and wine. When I am doing well I can tolerate these things. But the treshold is always changing. Its like trying to cross a chasm on a constantly moving bridge. Of course I took my progesterone before going to bed too. If I give up my progesterone I will have to go on mental drugs and I've been drug free for 1 year.

anyway I got up and drank 2 oz lemon juice in 14 oz water and went back to bed. The juice took my pain from a 6 to a 2-3 and I was able to go back to sleep. Ugh.

[kimmichele]

I've been on cystoproteck for three weeks now. I had a flare due to eating incorrectly but it went down pretty fast. before the flare i was having days where I didn't feel my urine coming out when I peed. I haven't had that in 25 years. So I think that the cystoportect is helping. I am also kicking sugar - have been posting in the diet and IC board. The thing i have to remember is just because I feel better for a few days doesn't mean I can eat a no - no food.
Kim

[boohiss13]

MelindaP: Oh! Ok; I had both of those tests done already. I didn't realize that's what that is.

Oh, and PLEASE keep us updated on the urethral suppositories! Would you do me a favor please, and inbox me, or email me:
boohiss13wm3mail@nc.rr.com after you've used them for a while?

Hmmmmmmm........I just had an idea. When I tried to have a rescue instill done I had a horrible reaction, and was in so much pain I was screaming and halaf-passing out. My Doc said he thinks it's cause my Urethra is raw. Now, what if he shot some lidocaine up there with a needles before....hmmm...dunno.

Kimmichelle: How long did you take the Cysto before you noticed a difference? I'm going to start soon...

[kimmichele]

Boo,
I've been taking Cystoproteck for about 4 weeks. I just finished my fist bottle. I thinks its helping sometime. I've had some very good days - but I am still very diet sensitive. I am so up and down between 1-3 this week on a scale of 10 with slight frequency when I am at a 3. I have been posting on ic and diet ,kicking sugar, regarding my diet.
Kim

[MelindaP]

HI Guys!

Kim, that's great! You seem to be doing better. I started the Cystoprotek yesterday, the sample pack they sent me. So far, no negative reaction so I am going to go ahead & order it. Did you order several bottles at once?

BooHIss, I will definatelty keep you updated. I'll still post my results here too. The Pharmacy keeps screwing when I got home tonight there was a message from them that they didn't get the sheet with my insurance # on it-ugh!!! But I am not going to start them till next week, so I guess that is ok. I would definately do lidocaine in your urethra before an instill! When I tried the instills, my nurse would put lidocain on my urethra first & it definately helped!

I'll keep you all updated!

It's so weird. I definately feel better when I don't urinate for a long time. It feels like an itch sore way at the top of my urethra that I want to scrathch! Then when I urinate, it feels like the urine passing over that sppot irritates it. I want to call Moldwin & see if he will prescribe a Nystatin pill for yeast. I just want to try that to see if I could have yeast in my bladder. Sounds crazy, but you will try anything to be rid of this pain!

Melinda :)

[kimmichele]

Melinda,
I ordered 4 bottles which is supposed to be a 3 months supply. I plan to take it for 6 months. I can't really tell for sure if it is working, but I have had some days where I don't feel urine when it comes out - a funny feeling after 25 years.
Kim

[kimmichele]

I got my IC out of my bladder about 10 years ago. but the urethra is a different story. I think my primary lesion is there. Urethras can't hold antibiotics like the bladder, and it has to cope with bacteria and yeast coming up the other way, especially at night when we don't urinate so much.
Ive been on cystoproteck for a month. I am better, but I think it is from the almond milk, because I quit almond milk for 4 days and the pain bumped up to a 3. Started again with the almond milk and it went back down to a 2-3. I plan to stay on the cystoproteck for 6 months. Though I am not in much discomfort I feel if I ate a no no food I would have a flare. but did have sex yesterday and did ok. i followed with douche, lemon juice and I stayed at a 1-2 level all day.
Kim

[MelindaP]

Hey Kim!

I wonder if the urethral suppositories that I am using would work for you? They contain lidocaine, an antibiotic & a steroid. I am going tommorrow for #2. The nurse is going to teach me how to put them in myself because it is a 1/2 an hour drive to get to the office (I have a 4 month old daughter) & I have to do them 3x a week for 4 weeks.
About the sex thing, if you don't mind me asking. I find it very uncomfortable, especially when he goes "deep". My pain is right in the bladder neck, so it is an unavoidable place. Basically sex is no fun for me anymore! If you have any tips in this area, please PM me!

Melinda :)

[kimmichele]

Melinda,
I just don't think I could put anything up my urethra. I just hated all those instills, which never did anything for me. Do they work?

[MelindaP]

Hey Kim!

I know what you mean! The thought of doing them initially made me cringe! I thought I would never do it. I did the instill as well ( at my insistance when I was pregnant, the uro I was seeing was not convinced I had IC). I did a series of 6 weekly instills & then went every other week for a couple of months. They really did not do anything for me either, but at the time it was all psychological. Now I know why they didn't work! Dr. Moldwin told me that they wouldn't have worked for me because the medicine is closed off from the part that neede it!
I had another suppository today. The nurse showed me how to insert them so I could do it on my own at home (yikes!). They do burn when you first insert them for about 20 minutes. You have the sensation you want to urinate just to get it out! But after that passes, my urethra just feels a bit more irritated. The suppository melts fairly quickly. It is hard to say ant results yet because the nurse told me it will feel worse before it gets better. She said I need to do them 3x a week for 4 weeks before getting results. I take a macrobid after each one, just to ward off bossible bacteria getting in. All in all, my urethra does not feel any worse after the intial burning.
I will keep you posted on my progess. I am going to try to insert one myself on Monday. Wish me luck!

Melinda :)

[MelindaP]

Kim,

Did you ever ask your Uro about trying Cytotec? I might ask Dr. Moldwin about trying it after I wean my daughter.

Melinda :)

[kimmichele]

Melinda,
Yes I did. She wasn't too happy about going off labe. also she said the medicine wouldn't get to my urethra. gave me a prescription for uromax, which I have lost. she said i "look so good" and am "coping so well" Ha - time for new uro!
I want to try it and mayby also the cyclopsorine a. If they don't work, maybe they could be put in a urethral suppository. I think Urethral syndrom (which is basically IC in the urethra) is an orphan disease of an orphan disease.
I went to pcp on fri and got some anarax. I took 25 mg the first night then 12.5 the next. It wipes me out. Plus is makes me extremely irritable. I can't take it anymore. My urethra is a little better. I drank my lemon ju yesterday and today, but after I had bm, the pain kicks back up in the morning. also the nerves in my feet are going crazy. (I injured them 15 years ago). I am going to my pain dr next week and also an acupuncturist. also to my shrink because i got off the natural progesterone so i can't sleep. I am didligently taking the cystoproteck and the evening of primrose oil. I am most worried about my diet. Everytime I add fruit and whole grains I get a flare. I can't go on eating like this! I am ready to get a urethrectomy in order to eat more healthfully...
kim

[sami4]

I have taken Cystoprotek for six months. I feel it has helped me a lot but what seems to be working best for me with urethral pain is Elavil. Elavil calms the nerves in the bladder and urethra. The next two things that helped the most were marshmello capsules which are a coating of mucigin for UT, and Aloe Vera caps which help with inflamation. When things get out of control though, I can count on Elavil to take away the pain, burn and sting. It also helps as a slight bladder antispasmodic.
Sammie

[MelindaP]

Thanks Sammie!

I tried the Marshmellow caps awhile ago, but didn't find it helped much. Maybe I will give it a shot again. What brand of Aloe Vera caps do you use? I shoulod try those.
I am on Elavil as well. I was up to 30mg, but the sugar cravings are too much. I just had a baby 4 1/2 months ago & can't seem to lose the weight! I find I do just as well on 20mg that I did on 30mg.
Praying everyday that we all go into a remission!
Melinda :)

[sami4]

When using the marshmellow caps you need to take 4 at a time to get the best result. I did not find them diuretic, just soothing, made my urine slippery. I use the Desert Harvest Aloe Caps 4-6 a day along with Algonot.

[Jamey]

Has anyone else noticed a urethral flare after anesthesia? I had laproscopic surgery two weeks ago and have been flaring ever since. They used a clamp on my cervix to move my uterus so I know they were rubbing against my urethra. I'm wondering if a diflucan may help. Maybe they pushed some yeast or something up there.

[MelindaP]

Did they use a catheter? THat could have done it. Or I bet it is just from the manipulation down there. You could call your gyno to check for possible yeast/low level infection? It will most likely calm down if it is not either of these. Or, you could try a Urelle (blue tab) to see if that helps. Sorry your in discomfort!
MelindaP :)

[Jamey]

Thanks for your reply melinda. I just took a pyridium and am sitting on an ice pack, I'm sure I'll be breaking out the estrace cream soon. :pray:

[shawnster]

I woke up at 4:30 am with pain. I ate too much aged cheese yesterday, plus stirfried shrimp with a little soy sauce, ginger and wine. When I am doing well I can tolerate these things. But the treshold is always changing. Its like trying to cross a chasm on a constantly moving bridge. Of course I took my progesterone before going to bed too. If I give up my progesterone I will have to go on mental drugs and I've been drug free for 1 year.

anyway I got up and drank 2 oz lemon juice in 14 oz water and went back to bed. The juice took my pain from a 6 to a 2-3 and I was able to go back to sleep. Ugh.

I'm really surprised by the lemon juice thing - probably so surprised that I originally attached my reply to the wrong post :)

Lemon juice is acidic and is on the caution list for the IC diet.

How did you come up with this as a pain reliever? I'm just curious . . . I thought it would make your IC much worse.

[v5mt]

I'm really surprised by the lemon juice thing - probably so surprised that I originally attached my reply to the wrong post :)

Lemon juice is acidic and is on the caution list for the IC diet.

How did you come up with this as a pain reliever? I'm just curious . . . I thought it would make your IC much worse.

I actually went out to eat yesterday and had two glasses of lemonade (presumably Minute Made or something; I doubt the restaurant makes their own lemonade lol), which I started to regret right after because I figured that would make my IC flare badly. However, it actually took some of the pressure off. I've been drinking just plain lemon juice today and it really makes me feel better.

I find it extremely bizarre too, but hey, I'm not complaining. :lmao:

[sami4]

This is no mystery--its a fact of body chemistry. The lemon is an acid and the body converts it to a alkaline substance in the process of digestion. Lemon juice is also encouraged by Urologists to be taken if prone to some types of kidney stones.
The body tries to maintain a proper acid base balance so just because something says acid does not mean it goes in and comes out the same way.
I know a lot of IC'ers say that anything acid, orange juice, lemonade and so on make them flare. It actually may not be the acid, it may be they have an allergy to the fruit itself. It could also be their body is on overload and cant handle a normal acid load conversion. This happens during stress, illness, medications or a high acid diet with no alkaline body reserves.
To alkalize the urine 2-3 Slippery Elm does a good job, so does icky baking soda. Too much alkalinity will make you very sick just as too much acidity will cause problems also.
Bottom line: The body maintains its own acid/ alkaline balance and converts everything going into it either into acid or base products. All the tinkering around with trying to change the PH of the body is futile, it has its own narrow idea of normal. You can temporatily effect the acid/base balance of your urine and saliva by what you recently ingest. A normal salive and urine PH for optimum health is considered to slightly acid. That would be around 6-6.5 for urine.
The average diet is very acid forming and that can cause the urine to test around 4.5-5 which is pretty acid (organge jucie is around 3).
I can drink lemonade t6o, it does not bother me either way.

[shawnster]

Thanks Sami for the info and I'm glad that you mentioned about acid forming versus acidic food. I was trying to wrap my head around this idea and had posted in the diet forum about an alkaline diet, but I wasn't having much luck. What you said makes sense to me now. I guess there are no hard and fast rules about diet and that even the IC diet must be taken with a pinch of salt (no pun intended).

At the moment, someone has suggested that I try an alkaline diet and that I cut out refined flours and wheat. I know that if you have fibromyalgia you shouldn't have pasta, bread, crackers, cookies, etc. I just wonder if it makes a big difference for ICers?

I sometimes get frustrated with the trial and error that we seem to have to do all the time whether it's food, drugs, other treatments, etc. Some days I just don't have the patience. :)

shawnster

[sami4]

Yeah, all the experimenting may seem overwhelming but consider this: if you dont figure out how your own body responds who will? A 15 minute visit to a doctors office isnt going to tell you how YOUR body reacts to things, just what conventional wisdom says is the norm.
Consider that in the top 10 causes of deaths is RX medication reaction. So--the majority of people react one way, but maybe you react another.
Your body loves your attention, be kind to it and to yourself, and ask it all the time,"Do you like this, how does that feel." The information you gather on yourself is priceless.

[Nal]

Melinda. Can you possibly tell me exactly what they put in those vaginal suppositories? I think most of my syptomes are also urethral realated only and it drives me nuts! Also, the medication they suggested for you thats used for mens prostrate...where can you get that? Thanks

Nancy

[MelindaP]

Nancy, I am not sure what was in the suppository as Dr. Moldwin has them specially compounded, but I know it contained a steroid & an antibiotic. I did not find them particularly useful for me. As far as the prostrate med, I am not sure what you are referring to. Prehaps Flomax? That is used to help relax the muscle walls. I tried that & again, did not find it very helpful but you might. Good luck!
MelindaP :)

[Jamey]

Melinda. Can you possibly tell me exactly what they put in those vaginal suppositories? I think most of my syptomes are also urethral realated only and it drives me nuts! Also, the medication they suggested for you thats used for mens prostrate...where can you get that? Thanks

Nancy

If you think you might want to have kids in the future Flomax is bad I've heard. My uro described the way it works and she said it affects the sphincter muscle in the (neck of the bladder?). The burning is usually irritation or nerve inflammation. I've found estrace cream with pyridium is the best I've found for me so far. I'm gonna ask my uro for lidocaine cream. Ativan also helps me, but only for the flares that come on all of a sudden for no reason that I can figure out. As for food related flares, nothing helps but ice:confused: