urethral stricture

I am a 48 yr. old female who has suffered with a stricture for almost 20 years. After many dilations I have an almost normal flow which has been fine for a long time but am driven to distraction by the pain I have when urinating. There has been no explanation given to me for the cause of this condition. Does the catheterization help with the pain or only the flow? I am afraid to catheterize because I am afraid of the pain. Does anyone have just the pain? Has anyone ever used a medication that helped with the pain and discomfort? I have been told by my urologist that the reconstructive procedure is iffy and can cause permanent damage to the bladder and create permanent incontinence. The feedback here is very helpful. Thank you.

Hi Bemp and Jill, It's so nice to have someone to talk about this with! Bemp, I'm so glad you've found a little relief at least. I had the same hesitations cathing while traveling, but pack it all up like you did. In fact if I go anywhere even overnight, I pack the whole kit and kaboodle just in case. I wonder if your doc could do more dialations (it's just a tube they insert like a caterer and it's just as quick as catching. ) I had it done a couple of times when I was at the doctor's anyway, it helps increase flow temporarily. I've read about women being given self dilation tubes, that doesn't look any harder than cathing either. Maybe that would be useful in your case. For myself, if my stream was still as slow as yours I'd be cathing a few times a day. My doctor gets concerned about the amount of fluid left in the bladder - better to get it out all at once, plus then you don't have to go a million times a day.

Jill, I don't have too much pain with urination. A little burning , especially after cathing, maybe, but not what you're describing. That must be pretty awful, cuz we all gotta pee! I don't think cathing would help with the pain and it does hurt a little. Perhaps you could try it and if it hurt less than urinating , maybe you could empty that way instead of going through the pain of urination. But of course, I don't know, I'm no doctor. I feel for you though.

Thanks Betsy yes I agree it's so good to have someone to talk to about this. Some good thoughts I do get

scared re too many dilatations as I already have scar tissue from the radiation and worry about extra

scarring. It is all a lot of trialling.

Jill, I don't get pain generally or when I cath either. There has been an odd occasion when I haven't used

enough lube and it was painful and I broke a bit of skin.

However when I first had the uro-dynamic studies done 2 years ago when they were first investigating the issues post radiation the nurse cath me as part of seeing how much urine was left in my bladder and the pain was terrible and intense and I cried with the pain. I now think that first catheterisation broke through

the scar tissue formed from the radiation. When the doctor first suggested self cath I was very anxious

due to this experience and the pain. The nurse did it in the office and there was no pain so that alleviated my fear. I started self cath 6 weeks after the dilatation done under anaesthetic so obviously the urethra

was open enough and now it's about keeping it open.

I have never taken any medication for my bladder/urethra issues. I cannot consider any reconstruction

due to my complex issues from the cancer.

All the best with finding a workable solution Jill.

I can't believe I found women with such similar lives as mine!! I'm so relieved! My retention issue, turns out after three urologist and an oncologist's opinions, to be from pelvic radiation treatment I endured 10 years ago.

About 7 or 8 months ago I noticed, as you mentioned betsy4, that I was having to urinate way too often and was up in the night at least 5 or 6 times. My GP wasn't concerned but at one of my visits this May it was discovered I was extremely anemic and had me hospitalized.

Having a history of ovarian cancer 10 years ago, my oncologist was informed of my hospital stay and suggested a CT scan which found a cancer recurrence BUT also a very overextended bladder.

My oncologist thought it was necessary to insert a foley catheter right there in his office a week later, and like you bernp, I was in pain, crying, the works. I don't know if it was tissue blocking or a stricture but whatever it HURT!

Well after a few mistakes by doctors (leaving the foley in for a week, taking it out with little or no advise with me back in the hospital in June with kidney pain and vomiting for one) I have been self-cathing three times a day. This was not an acceptable answer to me so I saw two other doctors who gave me Rxs and said to see them again in three months. Well the drugs didn't do anything and I wasn't going to wait three months to discuss other options. So I scheduled appointments, 4 months out sometimes, and kept them in my back pocket in case. Glad I did.The doctor I saw in December's at least paying attention.

Yesterday I had a cystoscopy and was "stretched open." I came home expecting miracles and found that after calling the nurse today that I have to wait two or three days for the swelling to go down before I'll see any difference. After reading about these repeat procedures, I'm less excited about this but maybe, just maybe I'll finally be lucky.

Believe it or not I had the recurrence of cancer and lung surgery and the only thing I kept hounding the doctors about was this urinary issue. It is a quality of life issue. Some of you are more skilled than I am apparently but I haven't mastered this enough to feel comfortable in a public bathroom. I tried to do it over the toilet but sometimes I'd place it where I thought it should be but it wouldn't go all the way in and I didn't want to try poking somewhere else, so back to the floor, light and mirror trick. You can't do that in a restroom stalls.

I see others talking about lube and infections and I wanted to share what was recommended to me. It was a self-lubricating catheter that's supposed to cause less damage to the lining therefore cutting down on infections. It worked better, i still got a few infections but I was getting them constantly before. This catheter is made by Rusch "Female FloCath Quick Kit" (contains the catheter, a povidone-iodine prep pad for cleaning among other things). I'm sure other companies make it but I got this through 180 medical in the US. I hope it's available for you.

I'm so glad to find you all because I don't feel like talking about this to other people usually because I know they can't understand this, who would - I don't really understand it either but at least I've found someone who can relate to the experiences.

Hi Ladies,

My story is similar to most. Diagnosed with Colon/Rectal cancer Feb 2013. Had Surgery, Chemo and 5 weeks of Radiation. Shortly after starting Radiation problems with urinating began. Its been a year now and the pain is excruciating. Burning, stinging, feeling bloating, just out right, miserable. Currently seeing the 3rd Urologist. He has suggested self-cathing 4 X's per day, but I can't. It is so painful, I feel like I'm gong to pass-out. Don't have UI infections. Not sure where to go from here. Doctor tells me if I don't empty my bladder I could end up with Renal Failure and on Dialysis. Very scared and frustrated.

On the other hand, very grateful Cancer was caught in time, but fear the problems with this issue will be a life-time of ...........

My story is very similar to many of yours. Was diagnosed with cervical cancer in 200 and had pelvic

radiation. I've had intermittent problems with strictures since then.

For several years my flow would gradually decrease until I would just be dribbling. One morning after that stage was reached, I'd wake with a very full bladder and the increased pressure would break through the

stricture. It would be painful and I'd spot blood for a few days but my flow would return to normal.

Gradually the scar tissue would build back up and the cycle repeated.

The strictures have now become so bad as to require dilation and wearing a catheter for two weeks after.This treatment will work for a few months and then I start having flow problems again and require dilation again.

I don't think self cathing is going to be an option for me. I work as a nurse and my work barely allows me enough time to urinate naturally. Having to take time out to catheterize is not something I see happening.

Am going to make an see the urologist next week and discuss possible options. Hopefully something

short of surgery can be done.

Welcome to the discussion ladies. Chris, I love the idea of a self lubricating cath. I am going to look into that!

Catching was painful for me at first, I feel like when I am doing it more often, the opening is actually bigger and it is both easier to pee and to cath. I bought a smaller one than the dr. Recommended, and boy did that ever make a big difference. Smaller cath, lots of lube, could help.

I also have never been able to do it without a mirror. But I place the mirror on the edge of the toilet, so it could be done in a public restroom. In some cases cathing is much quicker than peeing when all you can to is trickle , trickle trickle.

It's no fun ladies, but I sure am glad to have found you guys to comiserate with! Also it beets the alternative of not peeing.

I'm so glad to see responses again. I thought I got onboard too late and everybody left. Wendi & Arkie - I'm so sorry to hear you have so much pain involved. I really hope you find an option Wendi because you don't want to harm your kidneys and end up in the hospital. Arkie, I'm so with you on trying to live a normal life and cathing. Unfortunately/fortunately, I became unemployed when I ended up in the hospital this summer, so I've been struggling with this at home. Hard enough - and work too - what??? Please push your docs for help. Most of them seem to think self-cathing IS the answer.

As far as pain, I've been lucky so far except during the first time they put a foley in me. Speaking of pain, the "stretching" didn't work for me, not even for a short time. I did get a cystoscopy out of the deal and that at least identified the problem and luckily there isn't anything life-threatening. The damage was most likely caused from the radiation but it didn't cause bleeding, etc. it damaged nerves.

I had a follow-up appt with the nurse practitioner of the doctor's office and was told that all the muscles, including the pelvic floor are way too tight. She, the nurse practitioner, recommended something that I'm very hopeful about - physical therapy that would include myofacial release therapy. I will be starting that in about 2 weeks. I'll keep you posted.

Betsy the self lubricating catheter was such a relief. As the woman on the phone at 180 Medical (the people who send me these catheters) explained that enough of the lubricant doesn't really stay on the catheter and these catheters end up scratching the skin, and gives bacteria a way in. The amount of infections has been reduced. I hope you can get them, I'm sure you'll be pleased.

This situation really is awful. My advice - keep pushing for an acceptable answer. I stay nice about it with the docs but I forge ahead and tell them we need to think of something else and they do. Hang in there!

Hi I am a female also in my early 50's.  My reason for replying is to keep bladder awarenes open and not a hidden disease.  Due to the embarrasment for so many women we are not getting all the information that we need in regard to urethral stricture.  My story is not a nice one.  I was told I had a urethral stricture also but I did not.  I found out I did not have it after having a procedure called Internal Urethrotomy that I became totally loss of all my urine control in other words Totally Incontinent.  I had more surgeries trying to correct the error instead of taking care of my true diagnois a overactive bladder.  You see the problem is that we have to have doctors that are experience not in just their titles and the school they went to, don't get me wrong, of course that's great, they also have to be HONEST.  Due to the fact the Urethral Stricture is RARE in Women we must have doctors who are certain without a shadow of doubt that we truly have it.  How do you know you truly have this disorder, can you or I read the xrays....how many of us even question our doctors who we go to for care.  There are women who they know do not have the disease but because of their severe symptoms they diagnois of with it.  I eventually had to have reconstructive surgery and now self catherize for the rest of my life.  Everybody situation is different, but let's don't critize each other, let

's hear each other's story.  Yes, our medical can be very much different, but let's share, I wish there was a larger web site that I could have went on and found out some of the things I had to learn after this mistake was done one me. There has to be some type of system that warns us before doing this surgery and it lists other bladder conditions that we may have.  I wish you the best, talk to your doctor, talk, talk, hopefully he or she will be honest with you.  I now have a good urologist she is great I wish I had here before my medical misfortunate. 

 

I was misdiagnois with urethral stricture and had a procedure that was incorrect to. The procedure was to correct a stricture that at the time I never knew. I am now helping women to understand that urethral stricture is a very RARE disease in women. We must make sure that we truly have the disease. I originally have an Overactive Bladder. There are no web sites on a large scale for Women like you and myself to share our medical stories so that others can hear of stories like ours. For women who TRULY have the disorder we must have doctors not only experience and trained but must undersrand the Urodynamics testing in regard to Women versus men. I would like to be able to find women like you and myself.  I cannot do it by mysekf I need women willing to be open about duscussing Bladder Disorder conditions whether they have it or dont Bladder Disease is still not as open of a discussion like other women conditions.