Urethral diverticulum anyone know about this???

[jen74]

Hi ladies.
As you all know from my latest post, I have been suffering Reccurent UTI's, since the end of May with the same bacteria it seems. I cannot figure out why I keep getting the UTIs since I am always careful, I take only showers, do not have sex, shower and bottle wash after BM's etc.. I was looking up some stuff on the internet and came across urethral diverticlum as a cause of repeat UTI's. Though I have to say, the surgery to correct this sounds horrific!! Even the tests to confirm it sound horribly painful.
HAs anyone had any experience with a diverticulum? I cannot begin to imagine where or how I would get one excpet for possibly catheterizing to do instillations. Just curious if anyone here has any info on this disorder?
Jen

[jackiew75]

Let me know what you hear and I will do the same... I was diagnosed yesterday with a large one that has pus that can be "milked" out (gross I know). They now tell me that I dont have IC.

I have an MRI on Thursday and another appt with Uro on 9/16 to schedule possible surgery.

[jen74]

How did they diagnose yours? Did they say how you could have gotten it? I am scheduled to have a cystoscopy with biopsies on Sept.9th. I wonder if they would see it that way. I have read about the surgeries and such and it does not sound to reassuring. They say that they will come back alot of times and that the surgery is a very difficult one. Could they see the diverticulum just by looking down there? What symptoms were you having for them to suspect that?
Jen

[jackiew75]

Well, I gave birth 10 weeks ago, so this was a follow up with a new Uro... When he did the normal pelvic exam, I almost passed out from the pain. He said that he could feel a "mass" on the urethra and that when he pushed on it, it secreted stale, pussy urine which he tells me is indicative of UD... I have the mri thursday to confirm his diagnosis.

I do feel like it is a bit premature to still rule out IC since foods still aggrivate my bladder, so maybe I have both. I sure hope not. I have all the symptoms of IC but I guess they share the same symptoms. Sex is down right excrutiating, especially in certain positions. From what I have read, a lot of people are misdiagnosed with IC, PBS, etc when really they have urethral diverticulum.

What about you? The Uro told me that my UD is about the size of a golf ball from what he could feel... Not good.

[jen74]

Wow, that is big. Can you tell by looking down there yourself? Did the uro think that giving birth could be the cause of the diverticulum? I cannot imagine it being that big. I mean the urethra itself it very small. I wonder how he could feel it from the outside. I have heard that alot of people are overly diagnosed with IC when they really have other issues going on like UTI, endometriosis, and like you said possibly the diverticulum. Did he say why he did not want to look in your bladder with the cystoscopy when you saw him?
Jen

[torry]

Well, I gave birth 10 weeks ago, so this was a follow up with a new Uro... When he did the normal pelvic exam, I almost passed out from the pain. He said that he could feel a "mass" on the urethra and that when he pushed on it, it secreted stale, pussy urine which he tells me is indicative of UD... I have the mri thursday to confirm his diagnosis.

I do feel like it is a bit premature to still rule out IC since foods still aggrivate my bladder, so maybe I have both. I sure hope not. I have all the symptoms of IC but I guess they share the same symptoms. Sex is down right excrutiating, especially in certain positions. From what I have read, a lot of people are misdiagnosed with IC, PBS, etc when really they have urethral diverticulum.

What about you? The Uro told me that my UD is about the size of a golf ball from what he could feel... Not good.
I was diagnosed 2 weeks ago with UD. I had an MRI, CT endovaginal ultrasound and cysto all with in 3 weeks, to reach this diagnosis. My surgery is tomorrow morning. I can tell you more after that if you like.
torry

[torry]

Hi ladies.
As you all know from my latest post, I have been suffering Reccurent UTI's, since the end of May with the same bacteria it seems. I cannot figure out why I keep getting the UTIs since I am always careful, I take only showers, do not have sex, shower and bottle wash after BM's etc.. I was looking up some stuff on the internet and came across urethral diverticlum as a cause of repeat UTI's. Though I have to say, the surgery to correct this sounds horrific!! Even the tests to confirm it sound horribly painful.
HAs anyone had any experience with a diverticulum? I cannot begin to imagine where or how I would get one excpet for possibly catheterizing to do instillations. Just curious if anyone here has any info on this disorder?
Jen
I was diagnosed 2 weeks ago with UD. I had an MRI, CT endovaginal ultrasound and cysto all with in 3 weeks, to reach this diagnosis. My surgery is tomorrow morning. I can tell you more after that if you like.
torry

[jackiew75]

I dont know why the Uro did not want to look in bladder.... I think its because he believes that the UD is my only problem even though I have issues with certain foods and beverages. I guess we will see once I get the UD taken care of.

I did have my MRI tonight. Uhhggg.. What a crappy experience! When I left, I tried looking at the pictures that were left up on the computer screen and I think I did see the UD and it looked rather large. I did have dye injected through an IV so that helped me to see the highlited area. It certainly did not look very good.

I meet again with a new Uro on the 16th that specializes in female bladder/urethra surgery. My PCP is keeping her eye out for the results from my MRI and will call me with all of the details as soon as they become available. I am curious to see how quickly they will schedule the surgery. Do they consider it an urgent matter?

The Uro didnt feel it from the outside BTW... He felt a mass when he did a pelvic exam. And yes, golf ball size does seem a bit large but I can tell you that my husband noticed something wasnt right during sex. He only really mentioned that it could be something that you are born with.... I read about how it could be a child birth or an infection from one of the many glands in that area.

Torry... Good luck with your surgery and please keep me posted. I am looking for any and all info you could provide since the internet really has nothing from patients about the surgery. Did they tell you how long that you would be in the hospital for? How many days with a cath? Which procedure they are doing? How long have you been having symptoms? Size? Were they able to "milk" pus from your urethra? So sorry to inundate you with so many questions but I am trying to be very proactive about this and arm myself with any information I can. I will be thinking of you tomorrow and hoping that all goes well with the surgery and its recovery.:pray:

[SharonA]

Torry...I hope the surgery goes smoothly and your recovery time is short. Please let us know how you are as soon as you are able. (((Hugs)))

[torry]

Hello Ladies,

Thanks to all for well wishes! Well I made it home and glad to be here too. Everything went quite well. I'm lucky to have probably the best Uro/surgen in the Phoenix area.
I was up and walking around with in 2 hours of leaving the recovery room. Doc said that it was a very important part of a healthy and speedy recovery. My hips hurt pretty bad (due to positioning durning the actual proceedure) but a little pain med helped and after I walked it felt better too. I was offered Morphine at 2 hour intervals, but only had one injection after getting settled in my room. I think Morphine is an over-rated, short lived painkiller with a lot of side effects. I opted for something easier to tolerate. But frankly, the pain from the actual surgical site was never a problem. The first night was a little rough because of the bladder spasms/contractions. I couldn't sleep for more than 15-30 at a time. I kept waking up with a great need to urinate. It was the foley cath causing these bladder spams, and that was uncomfortable, but the use of antispasmotic drugs has helped for now.
My UD was about golf ball size, but size is not a factor in symptomology, treatment or recovery. It was resected and exsized, then the urethra and vaginal wall were reconstructed. Doc said that everything went quite good during surgery. I get to try life without a cath on this Thursday, I am looking forward to that day. If all goes well then it stays out but about 25% of patients will need an extra week with the indwelling cath. I am keeping my fingers crossed. I don't really care for all of the meds I need to take right now, but none are permanent, just for recovery. I think I'm doing really well, other than feeling a little weak, kind of spaced out and tired. Some of what I am feeling is caused from the meds. I did screw up, they told me to eat a normal diet so I had sushi and a very small taste of pizza late the night after surgery. Well don't jump right into your favorite foods, take it easy, I backed down to some soups and easy to digest foods and will resume a normal diet slowly, my stomach was not ready for a regular diet, but everyone is different. My doc hands out tons of info on this subject that he gets from a well trusted web site. I will be happy to share this site with anyone who may be interested. Wow! I'm pretty long-winded today. Have a great day ladies, and thanks again for the well wishes. I will be happy to try to answer any further questions re; this matter. :grouphug:

[SharonA]

Torry...Thank you for the update. I am very happy that the surgery went as well as it did. I hope your recovery continues to go well. :)

[jackiew75]

Yay! I just jumped on this morning to find out if you had posted how things went. I am elated to hear that you are doing this well post op! :woohoo:

Here is to a speedy recovery for you! I should be getting my MRI results today for my UD... I will post then. I may have more questions for you (if that is ok with you). I can find very little on the web about UD from a patients perspective.

[ICNDonna]

I'm glad it went well for you. Thank you for letting us know.

Sending healing thoughts,
Donna

[torry]

Jackie,
No problem, if I know the answers to any of your questions, I will be glad to help.
torry

[jen74]

Hi Torry.
I am glad all went well for you. I just cannot imagine having a cath in. When I do my instillations, just having it in for a minute is agony for me, I cannot even move an inch it hurts my bladder so bad. I hope you can get rid of it soon, my fingers are crossed for you.
How did they find out you had a UD? Did they say what caused it? What were your symptoms? Sorry for all the questions. I am wondering if I have this. I keep getting a UTI that wont go away ( same bug every time). I cant think of what else could be causing this. I do have IC though, my bladder was very inflammed just when looking inside, but It does not explain why I keep getting this same UTI back every time I stop the antibiotics. I hope I do not have a UD as I could not make it through all that. I cannot take pain meds or anti-spasm meds since they are anticholenergic meds which slow down thw gut ( I have slow motility issues as it is).
Jen

[Agape]

I had never heard of urethral diverticulum before reading these posts. Is this common? What are they symptoms and who is likely to get this condition? Seems there is always something new to worry about and I am a big worrier.
Good luck to all of you suffering from this and ones who have recently had surgery for this condition. Also, thanks for enlightening the rest of us.

[torry]

Agape,
I don't know how common UD is. I'd never heard of it until mine. Trying to reserch it is how I came across this site. (a very nice forum, may I add) I'm told the symptoms vary quite a lot. Stats on this seem to be few, but the ladies here have been open and willing to share, in a effort help each other. torry

[torry]

Jackie,
I can't answer your private message until you empty your mail box. I got an error stating that it is full and can not send my note to you. But yes, it's my name and anytime is ok.
torry

[torry]

Jen
Thanks for the good thoughts. The cath was the worst part, by far. UD found by accident, but it was huge and ignored by several docs. It's hard to get adaquate health care. Keep trying till someone listens! If you feel like you have a problem you prob do, and just have to push until you get help, it's not always easy. I always thought a female dr would be more sensitive to female problems, but that was not true in this case. My UD was easily visable, and bypassed by my female gyn. I expected her to go ** what's that" but she said, " I don't see what you are talking about, may I call in my collauge, to see if she can see what you are talking about?" By visable I mean a golf ball sized bulge blocking the opening to my vagina. I was, to say the least, more than puzzled. The urologist seemed to know what he was looking at right away, but still did several tests to confirm his suspitions. The surgery has been a very good thing, in my case, but everyone is different. This is the first time in years that I have been totally pain free! And it's only 12 days after the surgery.

[jen74]

Wow Torry, I am so happy you are not in any pain. This is great news! I cannot believe the gyne did not think a golf ball size swelling was abnormal. Could you actually see it? I cannot see anything out of the ordinary from looking at my vagina. It all looks normal. But of course that does not mean there is not a problem. I just had a cystoscopy and biopsies done this past Tuesday and will see the uro This Wednesday to go over things. I am gonna ask him to take a look and check things out. I am glad you are doing better. What were your symptoms with the UD?
Jen

[Charisse]

I am happy to hear you came through your surgery and am hoping to read you don't have IC! I was praying for a UD myself last year but my Uro-GYN said nope it was just IC. Would you mind sharing the link with us to the site where you get reliable UD info?

[Hannah13]

Hello Ladies,

Thanks to all for well wishes! Well I made it home and glad to be here too. Everything went quite well. I'm lucky to have probably the best Uro/surgen in the Phoenix area.
I was up and walking around with in 2 hours of leaving the recovery room. Doc said that it was a very important part of a healthy and speedy recovery. My hips hurt pretty bad (due to positioning durning the actual proceedure) but a little pain med helped and after I walked it felt better too. I was offered Morphine at 2 hour intervals, but only had one injection after getting settled in my room. I think Morphine is an over-rated, short lived painkiller with a lot of side effects. I opted for something easier to tolerate. But frankly, the pain from the actual surgical site was never a problem. The first night was a little rough because of the bladder spasms/contractions. I couldn't sleep for more than 15-30 at a time. I kept waking up with a great need to urinate. It was the foley cath causing these bladder spams, and that was uncomfortable, but the use of antispasmotic drugs has helped for now.
My UD was about golf ball size, but size is not a factor in symptomology, treatment or recovery. It was resected and exsized, then the urethra and vaginal wall were reconstructed. Doc said that everything went quite good during surgery. I get to try life without a cath on this Thursday, I am looking forward to that day. If all goes well then it stays out but about 25% of patients will need an extra week with the indwelling cath. I am keeping my fingers crossed. I don't really care for all of the meds I need to take right now, but none are permanent, just for recovery. I think I'm doing really well, other than feeling a little weak, kind of spaced out and tired. Some of what I am feeling is caused from the meds. I did screw up, they told me to eat a normal diet so I had sushi and a very small taste of pizza late the night after surgery. Well don't jump right into your favorite foods, take it easy, I backed down to some soups and easy to digest foods and will resume a normal diet slowly, my stomach was not ready for a regular diet, but everyone is different. My doc hands out tons of info on this subject that he gets from a well trusted web site. I will be happy to share this site with anyone who may be interested. Wow! I'm pretty long-winded today. Have a great day ladies, and thanks again for the well wishes. I will be happy to try to answer any further questions re; this matter. :grouphug:

I'm probably facing the same surgery down the line and I'm utterly terrified. I may pester you for more info as things progress on my end. Glad things seem to have gone well for you!