Any guys have hydrodistention and did it work?

[So Frustrated]

My urologist has yet to diagnose me with IC after numerous tests, questions, symptoms, etc. I'm 38 years old with a "normal" sized prostate. About 6 months ago, out of pretty much nowhere, I started experiencing frequency, urgency, pressure, discomfort/pain. I've also had a weak stream and hesitancy since this started.

I do recall possibly going more frequently than normal before all this, but it never really bothered me much to investigate. I was able to sleep and relax comfortably and go about my life without it interfering much. That all changed one day about 6 months ago without any specific cause.

So after trying just about every med and treatment out there for IC, I've seen very little improvement. I'll admit there has been some, but my bladder capacity is still quite low. I can't have more than about 100 cc of urine in it without feeling a need to go. When I do go, my stream is still very weak and stop and start. Once I finish, I get relief until I'm back to the 100 cc mark, sometimes less.

I'm on my 3rd month of Elmiron now. I've had a cystoscopy done, urodynamics, tried Elavil, rapaflo/flomax, enablex, vesicare, atarax, zoloft, vailum, xanax, pristiq, cipro, vibramycin, physical therapy, hot baths for months, and probably some things I can't recall.

I want my old life back. I want to be able to hold more than 2 ounces tops of urine before feeling uncomfortable.

My uro mentioned the possibility of hydrodistention at some point, but I haven't done it yet. I see several posts from women having success with them, but how about men? Any night and day difference? I am thinking of giving it a try, but I'm a little concerned about it causing me more problems. I don't want to get even worse and I know that I probably will temporarily. I just don't want it to make me worse permanently.

By the way, on my last uro visit, which was a follow up for my urodynamic test, he felt I simply have an overactive bladder and had me go on the Vesicare. I don't think this is the case and haven't seen much improvement.

I showed him my ultrasound of my prostate from months ago and it had a couple of areas of calcification that weren't noted on the written report of it. I thought this could maybe be the cause. He dismissed this idea. He didn't think there was any way it could be the cause of my symptoms (actually said "that would be too easy"). I don't know. It seems like they could be pinching my urethra since they are close to the middle and giving me the false signals, but he's the one who went to school for so many years to tell me I'm wrong.

If I knew what I really have going on in detail, I think I would be more patient and less depressed. It's the guessing, probing, and shotgun approach that is driving me mad.

Thanks for any feedback in advance.

[Rope_Wrench]

Not alone

Hello So,

I know where you are coming from oh so well. I am 37 and after doing the entire work up thing like you, they finally said IC (which was the first time I had ever heard of it). My prostate was just "slightly enlarged" and they felt it was not the cause of my freq. and urgency. I too had the weak stream and even some post void dribbling. What made them think it was not my prostate was the fact I was not retaining much after going. They changed my meds and it was not till I found myself with the urge to go about every 20 minutes and not getting much if any out that I went back in thinking I was locked up and I needed a cath (in hind sight I think it was a flair). They did the cath and found the normal amount for a post void. Just after they did the cath I had another strong urge to go and that was when they got clued in on IC. I had the cysto w/ hydro and that was when they found out what I had. Now my freq was going on for well over a year before I was seen so other then your six month window, we sound the same.
As far as bladder capacity, mine is low as well. I think mine is from going so much for so long that it just will not hold a lot anymore. As far as the stream, I feel it is due to such a low volume in the bladder and there is just not enough there to force out like when we were younger. I get aggravated sometimes with myself because my 4 y/o son can pee farther and longer then I can.
I am not on Elmiron but I think you will need to stay on it for a few months before you will see anything from it. I am on VESIcare, atarax and UroXatrol and they seem to be helping. I will go back in December and plan on seeing about changing things a little. The biggest advice I can give it the diet. I will be hounest, it sucks at first but if you can stick with it for awhile you should see some improvement. Then every now and then try out one of the things you cut out and see what it dose.
You can give the hydro a try and it will give your uro a better idea if IC is what you have. My first cysto came back normal and he just treated me for overactive bladder till I had that flair up. Then they did the hydro and could see the damage to my bladder wall lining. That was when they told me "IC".

If it is IC you have, I am sorry to tell you that your "old life" is done. Now don't get me wrong, its not the end of the world. I was told about my IC this past June and I am still going through my issues. I hate the changes I have had to make but if I step out and look at the big picture I can see it is not as bad as I feel sometimes. Somethings have got a lot better for me for example, before I was getting up about 5 times a night to pee. I am now back to sleeping through most nights again.
As far as if the hydro hepled me or not, not real sure. The freq went through the roof for the first few days after but it did get better. Has it helped in the long run? As of now, I would say no but it did not make things any worse. I am glad I did it because thats when I found out what I had.
The only other advice I can offer right now is if you are not happy with you current doctor, find a new one. Remember he works for you. If you don't like the job he is doing, fire him and find a new one.
Good luck and keep us posted. Also if you want to send me a private message, feel free. I am on here every day.

[So Frustrated]

Rope, I really appreciate your feedback. It is helpful to know I am not the only one suffering with this. It sucks for all of us, but it does help a little knowing we have others to discuss it with and hopefully find more answers and maybe one day a solution.

I may take you up on the private message offer when I have some more time (at work now). My urologist is supposedly one of the best around according to various patients, but that means nothing if he's not the best for me. I am going back in a few weeks and if I don't feel I'm getting what I need, I will definitely be moving on.

I'm thinking of traveling to one of the better known IC specialists I've heard about at some point. There's got to be something out there to give me more relief.

Thanks again.

[panthersfan]

Guys, I really do feel your pain (literally). I posted in a intro thread my short 7 month story of going from a normal 35 year old to one that feels like an old man and debilitated. Just got back from a Uro appt. and now I have a prescription for Elmiron. I am worried about the possible hair loss side effect. Anyone on it can say whether it is common or rare?

[Rope_Wrench]

Hi there panthesfan,
I am just making a guess here but I think you will have a lot of hair loss in the following weeks.......... Panthers are at a 1 and 2 season and not real sure they will get their stuff together by play offs.
All kidding aside I have no idea. Not on Elmiron yet.

[sshannon74074]

I was 37 ish when I first started having symptoms. Seems like dipping tobacco set it off at first and then I finally stopped dipping, took me about a year to quit, still have symptoms though. I'm 42 now and have had this for 5 yrs now and its been a miserable 5 yrs. worst part is the sex life isn't what it used to be because you don't enjoy it due to the pain. I think I've tried almost everything including self instillations. I had a hydrodistention and it helped with the frequency for a few months. It was excruciatingly painful afterwards and I ****** blood for 2 weeks. I think the only things that have helped are:
lower stress level, drinking lots of water and not holding (flushing your system), IC diet, pelvic floor relaxation and stretching, and maybe d-mannose a little bit but I'm not convinced just yet. I've tried too many things to start naming here including almost every antibiotic in the book. Right now I'm just hoping that some researcher finds a big discovery before I'm too old to start enjoying my life again.

Scott

[Rope_Wrench]

Scott,
It sounds like we are all having a lot of the same stuff and we all started showing symptom at the same age. With 5 years of living with this you are the veteran. I hope and pray for all our sakes that your experience is not the norm for the rest of us.
I do have a question for you, did you start out with pain or just frequency? Did it progress from the first time you were diagnosed?

[sshannon74074]

It came on gradually for me. There were a couple of times when I was 35 or 36 that felt like I was getting a urinary tract infection for a couple of days and it went away on its own. I never had any problems my whole life in that area. When I turned 37 I had a lot of misfortuned and stress and that's when the symptoms got worse. I thought it was related to the dipping and thought when I finally quit the symptoms would go away, well they didn't. To answer your question, the best I can remember is the pain and frequency happened together. As far as the symptoms getting worse over time, I don't think so. Actually a little better now that I am tobacco free and abide somewhat to the IC diet/lots of water etc. Emotionally its taken a toll because its so frustating watching your life waste away and there's not much you can do about it.

[sshannon74074]

I forgot to tell you all a couple of things that have helped me and that is hot baths and a heating pad. I usually fall asleep with the heating pad.

Also when I wake up in the morning my symptoms are usually gone or almost non existent. As the day goes on they get worse and peak in the evening.

[Rope_Wrench]

Not trying to be to nosey but in what way do you feel your life is wasting away? Are you married? What have you had to change? I can assume that never having enjoyment while having sex would take a toll on you. Has it effected your job?
Reason I am asking this is to try to get ready for what is to come.

[sshannon74074]

Not everybody has the same severity of symptoms. You may have better luck than me. This disease has affected every aspect of my life for the last 5 yrs. If you are not enjoying life, everything changes. This includes career, relationships, family, friends, money, travel, diet, overall mood. Its like your soul has been destroyed. Nothing seems to matter except getting better so you neglect, don't have time, or don't feel like doing anything else. The disease consumes you inside out. But..you keep fighting to survive and get better and hope for a breakthrough in research.

[Wyllyam]

I agree. It's been three years, and has accompanied me through every major event in life. It's getting hard to remember being pain free. I have improved a bunch recently due to figuring out that MILK was a trigger...(really???)..., and was actually happy to have a flu for a few days, as I was symptom free. It's weird, but I've read of others that this happens to.

I have read about Uracyst on this board a couple of times. The website still lists only Canada. It is also an instill apparently. Does it work? Do we have a chance of seeing it in the US?

[1982]

I have been deeling with urgency frequency for almost a year and a half. I had the hydro it didn't make things better or worse. It wasn't conclusive for me. I was wandering if anyone of you guys has tried the instilled medicine. If so does it hurt? I have read great things but the two uors I have seen said that this isn't a good option for guys my age 29.

[sshannon74074]

So the doc said he couldn't see any signs of IC? Maybe you just have an overactive bladder. Usually on IC patients have glomerulations visible with the hydro. I think there is a drug called ditropan? for that.

I've done the instillations but I think its worthless because the elmiron wont dissolve. They need to make a liquid elmiron for this.

[1982]

He said there was some mild hyper vascularity upon strectching. I saw pictures and it looked irritated put it didn't look like the round bleeding shapes. Do Dr's normally saw glomerlution is mild hypervascularity the same thing?