Another new guy

[some_guy]

Hi everyone,

My name is Todd and I have been reading this forum for a while now. I decided to join because I often feel very alone with this condition.

About nine months ago I was diagnosed with chronic prostatitis with symptoms of severe testicle pain, burning, frequency and urgency. The standard treatment was employed - antibiotics for two months, anti inflammatory(advil) and flomax. I got a little better but not much so another round of antibiotics was ordered and I started pyridium and vicoprofen but still no real improvement. About seven weeks ago the Urologist said that I might have IC and scheduled a Cysto with Hydro right away. After the procedure he said that he firmly believes I have IC. I was prescribed Elmiron, Urelle and percoset. After the Hydro I was in twice as much pain and really thought I would die, thinking that you can't have this much pain and not die. I hated the Urologist for insisting that I have the Hydrodistension I had told him I was concerned that it might make me worse and asked why not just treat for IC without the hydro. Well it took about four weeks after the Hydrodistension for me to finally get back to just horrible pain.

So here I am no better than when I started and my life has been turned upside down. I have almost constant testicle pain, penis burning, burning during urination, frequency and urgency.

My urgency is weird it is not about having to pee really bad, it's that it feels so disgusting that peeing even a dribble seems like it might help the disgusting feeling go away.

[jjt001]

Your symptoms certainly sound familiar! Especially the hope that urinating will help. I think many of us feel that way, only to be disappointed that it doesn't help much! I was lucky in that my doctor does start IC treatment without a hydro (if the treatment had not worked, we would have considered the hydro). For me, Elavil (amitryptiline) has been a total lifesaver. I noticed that you had not tried that. If it's something that's feasible for you, I would recommend talking to your doctor about it. My pain level was much reduced in a few days, and pretty much gone by three months. Good luck!

[NancyB]

Hi Todd -

Some ICers use Tofranil rather than Elavil because it causes less drowsiness and no weight gain problems. I am sure that those on Tofranil will be around to tell you their experience with it.

NancyB:)

[some_guy]

Your symptoms certainly sound familiar! Especially the hope that urinating will help. I think many of us feel that way, only to be disappointed that it doesn't help much! I was lucky in that my doctor does start IC treatment without a hydro (if the treatment had not worked, we would have considered the hydro). For me, Elavil (amitryptiline) has been a total lifesaver. I noticed that you had not tried that. If it's something that's feasible for you, I would recommend talking to your doctor about it. My pain level was much reduced in a few days, and pretty much gone by three months. Good luck!

Thanks for the tip, unfortunately Elavil is not a good option for me. I took it years ago for tension headaches and had to stop because it made me kind of crazy, it was sort of like a speedy confusion going on in my head. When I told the doctor he said it was an allergic reaction - sounds strange to me but it was a bad reaction nevertheless.

[blueangel]

Hi there,
Your story is very familiar to me. I went through the same thing with the hydro. The pain made me crazy. You are definatley not alone. I am very sensitive also to many of the meds that have helped others. Honestly, heating pads, hot baths and lots of pains meds have eased some of the pain a bit. I keep up hope that each day there will be a breakthrough. Unfortunatly I was just part of the herparin recall and the bladder cocktails.
I will keep you in my thoughts and prayers. You are not alone.

[some_guy]

Hi there,
Your story is very familiar to me. I went through the same thing with the hydro. The pain made me crazy. You are definatley not alone. I am very sensitive also to many of the meds that have helped others. Honestly, heating pads, hot baths and lots of pains meds have eased some of the pain a bit. I keep up hope that each day there will be a breakthrough. Unfortunatly I was just part of the herparin recall and the bladder cocktails.
I will keep you in my thoughts and prayers. You are not alone.

I'm really sorry to hear about the heparin recall, I hope the batch you were using did not cause extra problems for you. I'm trying to find out if my Uro used heparin during the cysto/hydro, he did say he was putting a cocktail of medications in my bladder.

Thanks for the well wishes, I wish you the same

[crkshnks79]

Im sorry your feeling so horrible !!! my Uro did a cysto in office w water and I thought I was going to die !!! I got outside only to literally fall to the ground in pain and lay there to someone helped me because the pain was so intense I couldnt move , just cry ... so I truly feel for you !! I hope that you start to feel better soon , this is no way for people to live !! Its a good thing you came here tho , Im new to this site and the people on here are phenomial , just knowing you have a support group that understands definitely helps !! Ill be sending positive thoughts your way , Take care !!!

[BrittanysDance]

Hi Todd and :welcome: to the ICN! I'm so sorry you are here under these conditions, but I'm glad you found the forum! :) I'm sure others will chime in their welcomes and thoughts as well as they log in and the night / day progresses.

it sounds like your uro is on the right track in diagnosis. Since you are having such burning, have you considered asking for possibly instill of marcaine / lidocaine and sodium bicarb? Also - diet plays a huge part of IC so look around on the board under the Diet section at the foods on the "do and dont" list - they are an intregal part of helping with that awful burning sensation; I call them "flares". Ugh - arent they awful! I'm so sorry you're feeling so badly.

I know its hard, but try not to strain or push when urinating, this just starts a vicious cycle with the pelvic floor muscles (yes even in men). I know men are built differently than we women are, but straining absolutley will make it worse. There are other men that are on the boards as well that I'm sure will chime in as well.

In the meantime, search the forums and if we can help you, please let us know - we're so glad you're here!

Hugs,
Brittany

[some_guy]

Thanks for the welcomes.
I am really glad I found this site, it helps to know that I'm not really alone. My wife has been very supportive but I try to spare her as much of my despair as I can because she has a lots of stress with her job and suffers severe migraines. Other than my wife I have only told two friends about my problem, they have both been supportive but it's hard to explain and it feels like I'm laying a burden on them when I talk about it, I'm sure that's mainly in my own mind not theirs.

Even before I joined this forum I found lots of great info here, in fact I printed some information about Hydroxyzine from here and took it to my primary doctor and she said it was a worth a try and that she had researched IC a bit and was considering adding it anyway. She gave me a prescription and it has helped - especially with the frequency but like many things I've tried it seemed to start out strong with great promise the first few days of taking it then after that not so much.

I'm glad this forum is here.

[ICNDonna]

I'm glad to see you posting. :welcome: to the IC Network!

Are you following an IC diet? That can be very important in getting symptoms under control. It does sound like you have a good doctor. That's a huge benefit.

Donna

[some_guy]

I'm glad to see you posting. :welcome: to the IC Network!
Are you following an IC diet? That can be very important in getting symptoms under control. It does sound like you have a good doctor. That's a huge benefit.
Donna

Hi Donna,

Yes I've been following the IC diet for at least five months now. Even before the IC diagnoses the first Uro I went to told me that for prostatitis that I should eliminate coffee, juices and anything acidic and he suggested prelief. I have stopped all the stuff I love but it does not seem to make any difference at all.
Recently I've been so frustrated that I've been thinking that if diet is not going to help and I'm going to feel horrible anyway then why not eat and drink what I want. I've only experimented with coffee a couple of times in the last week and it seems to make no difference whatsoever so I just don't know. I'll probably stick with the IC diet for a while because any glimmer of hope is better than none.

My primary doctor is great she has shown more interest and care than the two Uro's I've been to. I credit her with giving me hope while my current Uro seems to throw in the towel and acts like I'm from outer space because I am not responding to his treatment.

[SharonA]

:welcome: to the Boards...

How is your water intake? Are you drinking enough water to keep your urine diluted and flushing the urine out your bladder as quickly as possible?

I also want to caution you about the type of water you use for drinking and cooking. If you are using tap water, it could be causing some of your problems. Many areas add chemicals (like chlorine) to their city water. If you are drinking bottled water, you should be reading labels to see what is in that water. The label should list water as the only ingredient. Many bottled water companies add things to make their water "taste" better. Bottled Drinking Water is the local tap water where it is being bottled.

I am able to drink our tap water because this area has some of the best water in the country. We are very fortunate and fondly refer to our tap water as Memphis White. I have found that Natural Spring Water is the best for me if/when I travel outside this area.

:) :) :)

[elitynski]

Todd - the other thing you might be aware of is PELVIC FLOOR DYSFUNCTION (PFD) as the symptoms you talk about can also manifest themselves in PFD. There might be a need for you to find a Dr. who understands and can recommend treatment. I have seen 3 URO's - 2 of them are not really aware of male PFD - yet this is what I've been dxed with.

Although, I have suspicions that IC / PFD overlap. Frankly you might see one doc and they would dx IC while another would dx PFD.

Even though I haven't found the perfect treatment, I'm hopeful (for the most part).

Keep plugging away - it's definitely a journey.

[some_guy]

:welcome: to the Boards...

How is your water intake? Are you drinking enough water to keep your urine diluted and flushing the urine out your bladder as quickly as possible?

I also want to caution you about the type of water you use for drinking and cooking. If you are using tap water, it could be causing some of your problems. Many areas add chemicals (like chlorine) to their city water. If you are drinking bottled water, you should be reading labels to see what is in that water. The label should list water as the only ingredient. Many bottled water companies add things to make their water "taste" better. Bottled Drinking Water is the local tap water where it is being bottled.

I am able to drink our tap water because this area has some of the best water in the country. We are very fortunate and fondly refer to our tap water as Memphis White. I have found that Natural Spring Water is the best for me if/when I travel outside this area.

:) :) :)

Hi SharonA,

I drink a good bit of water but now that you brought it up I think maybe I should try bottled water. I have well water and I always knew it had some minerals but it might also be acidic - I'm going to have that tested and try bottled water for a while.

Thanks!

Thanks!

[leelee88]

Hello I wanted to add another :welcome:To the ICN!

[BluesCrew1]

Another New Guy,

I have been absent from this web site about 2 weeks with, too much work, and too much family stuff to keep up. I am sorry to hear about the pain you have been having. The testical pain you have described is also a sensation I have had. This was both with prostatitis and with Pelvic Floor Dysfunction.

The bit about working to relax when urinating - even when it is screaming pain - is hard to do, but does help. You may want to talk with your Uro about PFD. I was in Physical Therapy for 15 weeks to learn how to work with it. It is not gone, but it is much better and I now have an arsenal of exercises and stretches that help a lot. Also, if you are going to use bottled water, some of it is just Detroit Public water that has been filtered through activated charcoal. So it is not all really good for you. I live in the Detroit area and have found the water to be a bit of a trigger for me. So your thougths about your well water could be on target.

As for the Hydro, my Urologist still believes in them and I am scheduled for one next week. He also does a laser cautery of the ulcers he finds at the time. I am not sure how much distending he does. But, I have not had a reaction as you describe - at least not yet. But, I am just clearing up a flare up that started about 3 weeks ago and reached the screaming pain point. Called the Uro and was started on Atarax a week and a half ago. I am seemingly getting better. Unfortunately, it is another drowsey med. With this flare up, I would have tried most anything as I was in agony!

Anyway, good luck with your treatments and hang in there!! You are most certainly not alone. From another guy with issues . . .

BluesCrew1