Anyone Have Any Experience With Ic?

[tauschung]

I recently saw a specialist that my urologist referred me to, because I have not had much sucess in getting diagnosed with something or treatment. The specialist mentioned painful bladder several times. However, she stated she did not know what exactly was going on with me. She gave me a few options: get surgery on my prostate - microcuts to reduce pressure, physical therapy for my pelvic floor muscle, or electrostimulation for my pelvic floor muscle, OR get a cystoscopy to check to see if my prostate is the issue.

My main urologist saw me Monday and did the cystoscopy. My brain kind of turned off afterwards, and I wasn't able to ask many questions. He did tell me that he found the obstruction that my urodynamic study found (increased pressures). He stated that the neck of my bladder was suspended, and that it may be the cause of some of my problems. He suggested some surgery, and told me that it may not help at all..but would definately impair my ability to have children in the future.

My symptoms - seem to come and go regardless of medications:

frequent, painful, urination

painful ejaculation

tender testicles

constant pressure in my bladder and lower abdomen - during flares it gets much worse

feeling of not emptying after urination

painful spasms in my bladder

bedwetting

My medications:

Toviaz 8mg, Tofranil 20mg, Tamulosin .4mg

I plan on calling the office tomorrow morning to ask a few questions. I don't know if they'll answer, but I plan on asking anyways:

What is the name of the surgery that Dr 1 wants me to do?

Does Dr 2 want to meet with me again, to discuss the alternative therapies - since we have the results from the cytoscopy?

Should I try to do kegels?

To confirm, does Dr 2 think that I have painful bladder syndrome?

Did Dr 1 observe anything in my bladder that would point to painful bladder syndrome?

If anyone has any suggestions, comments, etc.. I welcome them. Thanks for your time.

[sarah_ab]

IT sounds like you definitely have a good plan of action in regards to calling your dr's office and asking these and other questions. Many times people are afraid to ask their dr questions about treatment options. You could also ask if its possible (and it may not be) to have an appt with both dr's at the same time so you don't have to keep going back and forth.

If you do chose the surgery that could affect your ability to have children, think about having your sperm frozen before hand. Then if the time comes you want to have children, you and your partner etc are able to use your own sperm if you so desire.

I'm glad you are taking the time to follow up with more questions, and while I don't have any advice in regards to your situation I do hope you are able to have a good discussion with your dr's and figure out a treatment regime that works!

[tauschung]

@sara_ab: Wonderful idea. They actually work in the same office. One of the reasons I'm going to call in tomorrow is because Dr 2 stated that she wanted to follow up with me after the cystoscopy. Then after I got it done, Dr 1 was like, 'I still don't know whats going on with you. We haven't ruled anything out. Your case is extremely rare..yada yada yada. Try the new meds and follow up with me in three months and we'll see about the surgery.'

The surgery is definately an issue, and I have tried to talk to my SO about it, and she basically said she needed to think further about it. We don't have any plans to have children. But, removing the ability to have children is another issue entirely. From what I understand, Dr 1 was saying that the surgery could cause 'reflux issues.' So, I might be able to produce sperm and such, but it won't come out right. It's another reason why I want to know what the surgery is, so I can dig further. I want to know of ALL costs and benefits, especially if there is a probability that it won't help me at all.

Thanks for the words of encouragement!

[redneck diaper boy]

Go to a different medical facility if you are not getting better. Always get a second or third opinion. Such actions saved my life.

[Bettypooh]

Ditto on you having the right approach to this- ask every question and get every possible answer before making any decisions. The internet makes esearch easy and you need to do that on your won. ou also need to get a second opinion from other qualified medical personnel. They are all human and may miss something important. I had to have a second surgery once because the first surgeon didn't diagnose and treat me properly. That little mistake of his could have killed me. I suggest that you get a small notepad and write your questions in it as they come to you so that you don't forget to ask any of them. Allow enough space to write the answers down too because you're going to want to think this through completely before making your decision.

Good Luck!

Bettypooh

[tauschung]

@redneck diaper boy: I am in the process of my second opinion with Dr 2. It seems that Dr 1 and Dr 2 don't see eye to eye. However, if I still don't like what is happening I'll go outside their network.

@Bettypooh: I've had to bring in notepads in the past. I work with MDs and PSYDs at one of my jobs and they are so full of themselves. It is definately a different experience being at the receiving end of their bravado.

I unfortunately had a few questions to ask this last Monday, but was not given the opportunity to ask away. Plus, the cystoscopy was pretty intense and that did a good job of shutting down my thought process.

[Bettypooh]

Lol, my thought process is always a mess, the only variation is how bad am I right now? That's why I find notes so helpful, either as a reminder or as an easy way to communicate- just hand them the list of your questions and ask that they answer them for you when they get a moment to do that. Email can be a good format fordoing this so long as they have a lot of email time, which medical care personell usually don't so a written list can give them a better way to help you.

My failed surgery was because of someone's self-assured 'bravado'. The bugger thought that because he'd gone through medical school he knew what he was doing. When he happened across me in the hospital a few days after I was first released, and found out he had failed, he was deeply affected- he began shaking so bad he almost dropped his clipboard as he ran out the door . All I can do is hope that he learned his early-in-the-career lesson well and that he takes more time to be certain now.

Nobody is perfect and when you're doing something which will most certainly have a large effect on someone else's life you need to be as thorough as you can no matter how much work is involved in that. Medicine is not a field for people who don't have this as their personal credo. That's why I love my GP. He doesn't care what it takes, he's going to give you his best always no matter what.

Get as many opinions as it takes to be sure for yourself. And remember the words of one of my mentors who was a lawyer: When you need a doctor or a lawyer, less than the best simply won't do- you're worth the best and the best usually have their price for a reason, so don't aim for cheap- aim for the best and worry about the money later. With the best there will be a later, without that there may not be !!!

Bettypooh

[ecconmi]

So do you have interstitial cystitis? You were not really clear in your post! I recommend getting on a drug called Elmeron. Also check out the IC Network online.

http://www.ic-network.com/

[tauschung]

And, the update is...I don't have an update. I keep calling in and am told that they will call me back. It seems like both doctors are never in the office at the same time. This shit is so old.

Edit: Dr 1's nurses finally got back to me. Dr 1 wants to do a trans-urethral incision of the prostate or TUIP. Talked to the SO, and she has no issues with it. I read an article stating that the TURP is more effective than the TUIP, and that it (TUIP) was done more for people who have more severe health issues. I'm going to definately talk to Dr 1 and 2 regarding TUIP and TURP.

Anyone have any special knowledge they'd like to share?

[adhb]

One advantage of TUIP over TURP is that TUIP is supposed to be less likely to produce retrograde ejaculation. With retrograde ejaculation, semen goes "backwards" into the bladder instead of coming out the end of the penis. Pleasure is somewhat less with retrograde ejaculation, and it is obviously much more unlikely that you will be able to impregnate your partner. I am guessing that the lower likelihood of retrograde ejaculation is the main reason the urologist is recommending this procedure for you. You're young enough that the doctor probably thinks that this is an important consideration. If you were 50 years older, probably it wouldn't seem so important.

[tauschung]

@adhb: Yeah. But, from the sounds of it, my doctor believes that I will have retrograde ejaculation as a result of the surgery. I've actually had it from one of the medications I had before. I talked to my SO, and she's comfortable with either. If we wanted to have kids (we are not planning to have kids), it's still not out of the question.

I guess we'll see what happens during my appointment in April.

[tauschung]

Thanks a bunch Rope_W. I don't think that they are kicking the idea around anymore. I think I just misunderstood the specialist.

Time for an overdue update! Today I had the TUIP done. And, it went well. I have a foley in right now, and will continue to wear it until next Thursday. The foley itself is pretty big, but I am still leaking a bit. So, I think I'm going to have to grab some pull-ups to absorb the excess.

It kinda seems like if this does not work out for me, my urologist has no idea what to do next and will likely refer me out. So, I am hoping that the surgery turns out.

During the last month I did a lot of physical therapy. The therapist told me that he thinks that I have compressed nerve bundles in my lower back and neck which may be contributing to my issues. He had me doing a lot of nerve stretches which helped my lower back. However, I don't know if he was hurting me or helping me because I could never get my ulnar nerve to stop hurting for three weeks. I started a new round of antibiotics at the same time as PT, so I don't know if the decrease in frequency/pain was due to the antibiotics or the PT. But, since I have stopped the PT my arms and back pain have since gone away. I think I should just stay away from them unless I get referred to a neurologist. My urologist said that if the physical therapist was right it would have showed up on my CT or the MRI.

So...there's my story.

[tauschung]

It's been a while. I think I am more or less healed from the surgery now. I am taking 8mg Toviaz every other day, and am thankful to be down to one medication.

Since the surgery, I have not really noticed any change in my bladder habits . My urine flow has really improved. But, I am still getting up and going to the bathroom and only urinating 2-6oz. I don't feel nearly as urgent anymore, but my urologist has told me not to hold my bladder for a long time. Incidentally, I talked to my mom, and she says that I've always held my bladder for a long time. As a child, I never wanted to finish what I was doing.

At night, I have not had any major accidents since the surgery. I consider this a huge improvement. However, I am still getting up anywhere from 2-4 times a night. And, I am not drinking any substantial amounts of water past 8pm (I usually go to bed 11:30-12:00).

What worries me, is that over the past week it has started to hurt to urinate again. It almost feels like when the catheter came out. I get this kind of burning sensation and also it feels like the inside of my urethra is inflamed or something because I feel a sort of pressure. If it continues or worsens, I'm going to have to call my urologist and schedule an appointment. I also am occasionally feeling the same pressure/mild pain in my lower abdomen.

Anyone have any thoughts or insight into my situation?

[Baby Brian]

tauschung, any updates? I hope you've maintained that big improvement but with out the pain now.

I've got urge incontinence that can get bad a times, but not as bad as you've got it. Still, my urologists over the years never really figured out what's wrong with me except one who had a really good guess I have spinal damage from a bad car accident I was in. So far the most help I've ever really had was them scratching their heads and saying "lets try this, then wait and see". I've been waiting 16 years now so I know what you've been going through.

[tauschung]

@Baby Brian: Unfortunately, it still hurts to go to the bathroom. Last night, I think I had to go to the bathroom four times. However, I woke up all four times! I am no longer wearing diapers at night because I have noticed that I wake up wet every time I wear diapers. I have only had a few accidents since the surgery. I am pretty thankful for that..

I *think* I am going to the bathroom frequently during the day. But, I need to put it on paper so I can view trends.

Another thing I've noticed is that I get that "pressure" feeling at night when I lie down at night. I think I may suggest going to PT to my urologist when I see him in a few months if I see no improvement. I tried to avoid driving to Austin for the PT I need last time...but if it helps..then who am I to complain?

It must be so frustrating for all those specialists to have no idea what is going on with your case. How have you remained strong?

I find it very hard to talk about with my partner and especially my family. In the case of my family they only know some basic information i.e. that I had an obstruction and had to have surgery. And, financially...it is so expensive to see these specialists and have tests. I feel very worn dealing with this as well as balancing work, personal life, and school.

[Baby Brian]

tauschung, I'm sorry to hear that but at least you seem to have gotten a little improvement. I'm holding out on the small improvements since I know I can get better than that. I've wavered and given up on numerous urologist in the past (after the same tests, drugs, etc which didn't work before so why would they now....). This time around I'm determined to stay determined with this urologist until he comes around, stops practicing, and starts performing real medicine. All I can say is that when I've given up on them scratching their heads, or just going thorough the steps of "let's try this and see.." that I've only set myself back on getting this resolved. Looking back I can probably say if I had stayed with my first urologist it would have taken years to get resolution, but that would still have been over ten years ago by now. Given how frustrating that is, putting up with them is actually easy.

I'm lucky in one regard that my auto crash happened while I was on duty with the Marines (it actually wasn't an accident but that's another story). The military retiree health insurance is second only to the one congress didn't sacrifice them selves for- so my costs are pretty low. I suppose having been in the Marines also gave me the humility not to be embarrassed about this, and the courage to stand up for myself. My family still doesn't understand it all, but at least they accept me- faults and all. As for my wife, I was up front with here when we were dating (not may other dates went so well). She actually likes me in diapers more than not, and has been fully supportive. I can understand the balancing problems though, I've had a number of years where I use up my allotted 80 hours of sick time and my 80 hours of vacation time just on surgeries. Now that will ruin anyone's personal life, military strong or not.