No pain - just constant sensation of needing to urinate

[webslave]

"Cysto Renew" is another product from naturopath Geo Espinosa.

As for the Aloe Vera, the only proof we have that it can help CPPS/IC is an unpublished 1995 trial of 8 patients!

[Caedar]

As for the Aloe Vera, the only proof we have that it can help CPPS/IC is an unpublished 1995 trial of 8 patients!

Although I can't find a lot of research on aloe specifically for IC, there's pretty strong consensus (IC network, etc.) that it can be helpful, as it increases the pH of urine (reducing irritation of bladder wall). Also, some recent research shows that it can reduce production of certain inflammatory factors. I personally have not tried it for my IC, but I know a lot of people swear by it as one (mostly palliative) component of their overall treatment plan.

[webslave]

Although I can't find a lot of research on aloe specifically for IC...

Any at all?

there's pretty strong consensus (IC network, etc.)

There used to be a pretty strong community consensus that chronic prostatitis / chronic pelvic pain syndrome was an infection, so I never give internet chatter too much credence.

it can be helpful, as it increases the pH of urine (reducing irritation of bladder wall).

Really? Link to study? I found one that said changes in urine were "unremarkable"
http://pubmed.ncbi.nlm.nih.gov/17044448

Also, some recent research shows that it can reduce production of certain inflammatory factors.

In vitro study, take cum grano salis.

[Caedar]

The research on aloe specifically for IC essentially amount to the study you cited. I'm not saying it doesn't need more research; it definitely does and I'm not sure why it hasn't gotten it in the past couple decades. Nonetheless, right now it's included among the AUA first-line treatments for IC (ic-network.com/downloads/auatreatmentchart0613.pdf). If this were an extremely expensive therapy to try, I'd definitely steer clear of it, but $25-30 to give a particular (again, mostly palliative) therapy a shot that a lot of people have said helped? Not a terrible investment.

Extra caveat: A four month supply is probably too much to start with, unless you're getting killed on shipping fees.

[webslave]

Er ... I'd advise you against relying on anything from the ICN website. It's full of hearsay, rumour and self-serving promotion of products their website sells, like Desert Harvest Aloe. When I attempted some years ago to bring some scientific rigour into discussions there, I was rebuffed.

Here are the actual AUA guidelines on IC treatment, and nary a mention of Aloe Vera
http://www.auanet.org/common/pdf/educat ... ndrome.pdf

[Caedar]

Interesting. Thanks for the better info!

[Burner2k]

CMT23,
I really sorry to read that your symptoms have flared up again to the point of extreme discomfort. If you remember, I too contracted this condition after ejaculation (Jan 2010) and suffered daily for nearly 8 months before medications (mainly at least in my case) and PT (internal & external) brought relief to the point where I could function normally. Of course, I was never cured but my symptoms were at 3-4 out of 10 with occassional flares.

During the “down-time”, I have visited a great deal of doctors here (including alternate medicines ones) and have tried OAB meds,and anti-depressants (worst side effects of all meds I have tried so far) to oils which when applied externally supposedly reduce inflammation in urethera/penile tip...none of them have been able to really reduce the sensation to 1/10 level. As you mentioned, some of the OAB meds didn't do much in terms of helping urinary sensation but did make the process of urinating more difficult. Anti-anxiety meds did however help in reducing spasms induced due to heart palpiations (I have had my hear checked as well and it is healtheir than it normal for my age :))

Also when I visited Tim Sawyer back in Sept 2010 for a few sessions (< 10 as that is all I could afford in terms of time and money), he did find trigger points near around the prostate and also mentioned that he could feel the some kind of spasms near the region. Another lady physio went a step further and claimed that it was indeed my bladder which was spasming. I am definitely more inclined to believe that there is a whole load of cross-nerve exchange going on down there.

Over the last few weeks, symptoms have been flaring up especially after bowel movement. I think the culprit is my sitting position. I am also under extreme stress due to other personal reasons and my exercise regime has been disrupted. Now, I think I am at 6.5 to 7...which is still not as bad as it was when this thing started. But if possible would like to return to at least 3-4 level.

I think I will restart PT here in India (hey, cheap healthcare)...the guy does mainly external and will evaluate the progress after few weeks and decide if internal is needed. I feel the need to relax my glutes and pelvic region in general.

I am also thinking of restarting some anxiety medications to see if they will reduce spasms due to anxiety heart palpitations. If anxiety meds do not do the trick (will give it around 14-21 days per my pyschologist's suggestion), I plan to move on to Lyrica and finally some anti-spasm meds. I hope through stress management and PT, I can reduce the symptoms level where I can direct my mind to track more important personal issues.

I am thinking of visiting an Andrologist soon. I seriously feel that a small region near the urethral opening is more hypersensitive (the same region where I get peeing sensation)...find out if he can bring in some fresh perspective in to this. I have mentioned this to several urologist and they basically say its normal for a dude with OAB.

If he refers me to an urologist, oh well, its back to square one :)

I will post back if I find some improvements.

[CMT23]

Hi Burner.

I'm sorry to hear that you are still dealing with symptoms. Did you get the wand from Dr. Wise for the self myofascial release?

What medications have brought some relief for you? I know you were taking Baclofen, which I tried without success. What dose were you on? Maybe a higher dose would help me.

A week ago I saw another urologist who was a little open minded and I explained the muscle tension / trigger point theory. I told him that pressing on the anterior levator ani muscle exactly recreates my symptoms. He said he had used Botox injections for people with extremely tense pelvic floor muscles. It sounded like it was worth a try.

So using a rectal ultrasound device, I told him where the most tender points were that exactly refer the urgency sensation in the tip of the penis. This is where he injected the Botox. 10ml in each point, three points on each side.

A week later and I don't feel any different. There have been good moments and bad moments since the injection, but that is how it's always been from the beginning. He said I need to give it two weeks, but I am starting to get disappointed that it doesn't appear to have brought any great relief. I wonder if enough Botox was used or if perhaps we missed the key areas.

He did comment that is is completely abnormal that pressing on these points results in an urgency sensation in the tip of the penis. So I feel confident that my problem revolves around this. As I have mentioned, I can take a hot bath and lie completely still afterwards and the sensation reduces dramatically for 20 minutes or so. But if I get up and jump around it will come right back. Even when I am sitting still sometimes, I feel a reduction in the symptoms, but as soon as I stand up and move around, the sensation of urgency hits me harder.

I also feel a constant fluttering of the muscles in the pelvis and even my penis often quivers uncontrollably when I am relaxing or stretching. He didn't think I have IC since I have no pain around the bladder.

So maybe I don't have IC or chronic prostatitis / chronic pelvic pain syndrome or overactive bladder - but whatever I have, the anterior levator ani muscles are involved. I was up in the middle of the night last night watching football. During that time, I barely felt my symptoms. 12 hours later and I now feel enormous discomfort. That usually happens if I don't get enough sleep.

I have a source in India for Comfora, the Elmiron generic, but my symptoms just don't sound like IC. I already tried Cystoprotek and any accredited quercetin product and Qrol. Taking Elmiron for 6 months seems like kind of a desperate move considering the side effects and my own symptoms.

I am trying to get someone to bring me Uribel from the states. Even if it just provides a little relief, that would obviously be great.

I have tried many antidepressants without success. I am thinking of trying very low doses of Xanax as anxiety is somehow linked in with my symptoms and Xanax, valium, etc. seems to take the edge off. But I just don't want to be hooked on those kind of drugs. Maybe at some point, it's better to be addicted to Benzos than to deal with this discomfort. (Yes I tried Tramadol, which gave me great relief for a few days before it stopped working, and anyway, the side effects and subsequent withdrawal were terrible).

As for CystoRenew and AloeVera, I'm at the point where if it has helped one person with similar symptoms and it's not too dangerous, then I'll give it a try. They both say to take for 3 or 4 months to see if they help. So we'll see.

I've been using a TENS unit on my lower back and with a rectal probe for quite sometime with no results yet. Another doctor here recommend I try PEMF. I went online and for my symptoms advised that the best choice was this one:

http://drpawluk.com/store/pemf-120-portable/

But I don't have an extra $19,000.

So they said this one is also worth trying:
http://drpawluk.com/products/sota/

I ordered it and we will see. They said to do 20 minutes twice a day.

Oh, and I guess I will order this new book:
Ending Male Pelvic Pain: A Man's Guide by Isa Herrera

So that's about it for now. Whatever is wrong with me, at least I can be sure that the anterior levator ani muscles are not normal so that gives me hope that in the long run, the Wise/Anderson Protocol will help.

As I am sure you can relate, this is by far the most challenging situation in my life.

[Caedar]

Regarding your ani levator pain, have you had any biofeedback tests to see if your resting pelvic tone is higher than normal? That could help reassure you that pelvic floor tension is involved somehow. (For example, when I went to a PT recently she did a diagnostic biofeedback session and found that my resting pelvic floor tone was about 10x the normal resting tone.)

[ianiscool25]

CMT,
Your symptoms and mode of treatment are very similar to mine. I was originally diagnosed with OAB, then IC, then more recently CPPS. I do my best to relax but sometimes it is maddening. Its been about 8 years. My main issue is the constant need to urinate at the tip of the penis. Though, I have small amounts of pain on my left groin area when my bladder begins to fill up. Just like you, I visited Tim Sawyer and found trigger points in the area around the prostate and the upper portions of the levator ani. When I visited Marilyn Freedman in NY she was actually able to relieve the symptoms temporarily by pressing on the point. It was amazing. At the moment I am still working with the wand and it has been difficult getting results. The area feels sore/ painful and enhances my symptoms but I have been unable to improve it. I am keeping at it though because I always remember how it felt when she pressed on the location and relieved it so effectively. I just wish I could do it as effectively on my own. It is a very distinct location far up in the in the region, but it is just unwilling to budge and improve.

I have tried many of the bladder medications and supplements without help and also Elmiron for 6 months without any success. Acupuncture also did not improve symptoms. The protocol still seems the best way to go. I still hope to find a physical therapist who is as good as Marilyn that will treat me over a longer period time, but that seems unlikely. If I find success with any treatment or with the wand I will let you know.

[Caedar]

Ian, have you explored external TP release around the lower abdominals/pubic mound much? Have you tried hydroxyzine, an antihistamine that in low doses can reduce bladder inflammation?

[Wolfcub]

Are your symptoms also reproduced when you press along your urethra and the area below the scrotum? (bulbospongiosus muscle) I also have that constant annoying sensation in the tip of penis. In the last days I've been self-exploring the pelvic muscles rectally. I've been noticing interesting patterns and I'll update soon.

[Burner2k]

Hi CMT23,

I need to apologize for the late response. I’ve been meaning to write you (yeah for nearly 2 months now) but I’ve been preoccupied with so many other stuffs. My personal life is a mess…thanks to chronic prostatitis / chronic pelvic pain syndrome and its been an on going struggle to put it back together

Anyways, the medication which gave me relief was Baclofen. I used to take 1 x 10mg @ night just before bed time. That coupled with hot baths really kept me going in good (80% normal) condition for a long time. I was on Baclofen for nearly a year before I decided to quit on it. No particular reason except that I felt normal enough to go off on it! I think the highest dosage of Baclofen is 75mg per day…may you can start with somewhere on the lower side like 25 or 30mg dosage to gauge your reactions to the medication.

When things have flared up, I have also tried Lyrica (lowest dosage 75 mg x 1 @ night) on & off and I have to say, except decreasing my hypersensitivity at the penile region after sustained usage (> 2 months), it did not help me in abating my symptoms at all.

I have also tried anti-anxiety medication and anti-depressants. None of them have made a difference significantly…

Honestly, it’s been a while since I’ve had internal therapy as well. Not that it did any good for me, except on the day of the therapy…but I finally found a therapist here in India, who is willing to & claims that he has been trained and performed internal trigger point therapy on other patients as well. If things get really screwed up, I will go to him. Plus PT is pretty cheap here compared to US

When I saw Tim Sawyer, they weren't selling the wand to general public yet. He suggested that I use Crystal Wand to treat internally in case I do not find a PT in India. Luckily I did find one for a short time (not the one mentioned above) and thankfully I never had to use my crystal wand a lot to treat myself. Anyways, I find it hard to reach trigger points around the prostate with the wand. In my experience, a PT with long fingers can reach them easily & probably more effectively!

Right now, it’s definitely worse than 80% normal but not bad enough as it was when this thing started. May be my mind has accepted the condition and even with some sensation, I am able to function.

I hope the above post helps you in some way and hopefully your symptoms are better at the time of reading this post

If you have any questions, shoot 'em back at me.

[CMT23]

It's been many months so I thought I would post an update. I tend to stay off the forum until things really start to flare up.

So I did at least 6 months of the Desert Harvest Aloe Vera and also 4 months or so of the Cysto Renew. Really no change. I guess that is not surprising as I clearly don't have IC. (No foods that aggravate those with IC do anything to my symptoms apart from coffee (a bit worse sometimes) and alcohol (much worse, but not til the next day). I also did the home PEMF for many months without any very obvious improvement. Also, tried a home TENS unit with pads on lower back, and the device from Germany that is a rectal probe that heats up. No obvious improvement.

I continue to do the physical therapy with the wand from Dr. Wise (now maybe 3 times a week). I did it every day along with the stretching and relaxation for at least a year. Pressing high up around the prostate still exactly mimics my symptoms. I can press much harder now than I could when I first started using the wand, but the sensation remains.

I have not practiced relaxation for quite some time and I will now start again. I can see how it would be very good for me, but I suppose I was somewhat discouraged after not getting the results I was looking for after a year or so. Even though I don't have classic CPPS, my personality seems to be similar to many of those on this board. I feel anxious easily and nervous easily. I usually think of the worst case scenario. I find it difficult to feel truly relaxed. So those are all probably very good reasons to regularly practice relaxation/meditation.

My symptoms are always present, but fluctuate, sometimes after obvious triggers like lack of sleep/alcohol and sometimes it just seems to have a mind of it's own. When things are really flaring up, I take Klonopin (.5 to 1mg) to sleep and usually within a night or two or three, my body kind of resets itself. (I do hate the blur feeling the next day). If I feel it getting worse during the day, I sometimes takes 2.5mg of valium. I know these meds can't be taken every day, but it makes things tolerable to know that something exists that can allow me to rest and for my body to reset itself.

Really after 18 years of constant symptoms and many years spent looking for a cure, and many tests, and many, many pills and potions, all I can really say with confidence is that deep relaxation helps me to feel better. Lying in the sun. Getting a massage. A hot bath followed by lying down. Strenuous exercise. I suppose it makes sense to then follow that and begin to spend more time exercising and practicing relaxation daily, although like so many people here, oh how I wish there was a medication that simply reduced the constant feeling of urgency - I've tried dozens of pharmaceuticals and herbs and won't rule that path out completely, but it seems that this is probably not the solution in my particular case.

As I get older (35 now), it becomes more difficult to accept the impact that this condition has had on my life. There are jobs that I have turned down because I know the traveling would flare up my symptoms. There are countless invites I have turned down only because I didn't want to sit there in discomfort - better to go home, take a bath and hope the next day is better. There are flares that sometimes last days at a time that are just so beyond simple discomfort. And there are many times when I find myself wondering what a particular moment would be like if I felt 'normal'.

At the same time I am lucky to have a work situation where I can go home early if I need to and also to have an understanding wife. At the very least, this condition has left me with a great deal of empathy for anyone struggling with issues that seem beyond their control. And of course even though this has been constant for 18 years, there are many times where it feels more annoying than overwhelming.

Anyway, sorry for the long ramble. I wanted to post an update. If anyone has hit on anything that they feel has really helped, please do share! I will do the same.

[Burner2k]

CMT23,
My visits to the forum have reduced significantly but I do check in once in a while, usually when things are flaring up.

So far I've had a terrible 2015. There has been significant flare up and still stuff like hot baths work. Most days, I am able to control & function some how but some days have been bad. Off lately, post-bowel movement flare ups are common. If I take a hot bath or something, I think the spasms die down.

I am sorry to read that you haven't found significant relief. I have some faith in PT and I do believe it is important but I also believe that in our case, it won't "cure" us.

I have been recently informed that Urgency could be part of Fibromyalgia (Heck I think urinary urgency tends to be part of all possible chronic conditions ). Have you tried any anti-convulsion medicines like Lyrica etc? I took Lyrica (75mg 1 @ night) for about 3 months back in 2011 summer and I remember it not making a whole lot of difference. Of course I was feeling 70% normal at that time...

Also have you tried GABA? Just asking...

Hope you are feeling better than the time when you made the most recent post.