No IC and now Urethral Diverticulum? Help!

[jackiew75]

Went back to see Uro today that I have been waiting ages to see... We talk about IC and how he wants to try some new meds to stop the urge but basically tells me to take some Motrin for pain because narcotics are just a bad thing.... He asks me to undress and lay on the table for the exam and when he does it, I just about faint. I start sweating and nearly crying because he is just about killing me with this pelvic exam. He quickly tells me to get dressed and that he will be back in to talk to me because he thinks I do not have IC but have urethral diverticulum. He said that the pain, the sac he could see/feel and the fact that he could express pus from my urethra lead him to this conclusion.

I am at a loss at this point... for a couple of years I am told IC and now this. He tells me that I need to have surgery sooner rather than later and scheduled me for an MRI in 2 days and a follow up in two weeks with another Uro in his office that specializes in these cases.

I am horrified. Part of me is thankful that it might not be IC (no life long chronic bladder issues) but angry that nobody found this before with all of my complaining that I am in pain and something is wrong.

Can anyone offer any advice or similar stories?

[ICNDonna]

It would be wonderful if what you have can be fixed! I'll cross my fingers for you.

Hugs,
Donna

[jackiew75]

It would be nice! Sadly, I can find very little about the surgery from a patient's perspective. Frightening to say the least.

I am curious to see if anyone on this board has had the same problem and still had IC or not. Apparently, the symptoms of IC and UD are very similar.

[jen74]

Did they ever look inside your bladder to confrim the IC? Maybe you dont have it and maybe it is just the diverticulum. But if they looked inside your bladder and seen the IC, then I would think that the IC would be seperate from the urethral diverticulum. I am not a doctor, so I could be wrong. I hope that they can fix you and you do not have IC after all. That would be great.
Jen

[jackiew75]

No... they were going to do that but then decided not to because of what they found yesterday. I am wondering if they will be able to see any deformities within the bladder with an MRI... Do you happen to know?

Jackie

[jen74]

They say an MRI is one of the best ways of x-raying since it is very detailed. I am not sure if it would see an imflammation within the bladder, but it would see any type of mass or cyst I am sure. I hope all goes well.
Jen

[jackiew75]

Well, I FINALLY have a diagnosis. I dont know whether to feel happy, sad, ****** off or what. The MRI results came in this morning... I have a large urethral diverticulum. All these years thinking I had IC... Well no wonder none of the treatments were helping me!:loco: I really thought I was losing my mind.

I dont really have any reason to post here anymore but thank you all for all of your wonderful support and may someone, someday soon find a cure for IC! Peace and happiness to you all!

Jackie

[SharonA]

I am very happy that you do not have IC. That is wonderful news. I hope you get this taken care of quickly and that you have a wonderful and healthy life.

:):):):):):):):):):)

[jen74]

I am sorry to hear about the UD, but glad that you may not have IC. Did they ever dx you with IC, meaning did they ever look inside the bladder to see if it was inflammed? In any event, I hope they can fix this for you. Is surgery the only option?
Jen

[jackiew75]

They never looked in the bladder to see if it was IC... Just ASSUMED because of the symptoms. I wish I had known more at the time. The best thing I could have done was change Uro's, I just wish I would have done it sooner. With that being said, you can't change the past, just move forward and I am greatful for the valuable lessons I have learned along the way. I also started seeing a new PA in my PCP's office and I just love her to pieces! She has been very proactive in helping me get to the bottom of this!

So because this has been there for so long undiagnosed and I am suffering sometimes severe pain, i received a call from the Uro... Surgery is scheduled for next monday to remove the rather large urethral diverticulum. There is no other option for this because I have severe symptoms. Part of me is very excited as I do not remember what it feels like to go to the bathroom without experiencing pain.... The other part, I am not crazy about the surgery but I will get through it!

I encourage all of you out there that reads this post and has been dx with IC solely based on symptoms to seek out a new Uro. I did not have to live like this for years. I thought I was going crazy; none of the treatments would work for me and everytime I complained that the elmiron, rescue instills, elavil, tylenol, etc. were not working for me, the uro looked at me like I was crazy and then just brushed me off. Be proactive in YOUR health because your body belongs to you, not anyone else.

Jackie

[jen74]

I encourage all of you out there that reads this post and has been dx with IC solely based on symptoms to seek out a new Uro. I did not have to live like this for years. I thought I was going crazy; none of the treatments would work for me and everytime I complained that the elmiron, rescue instills, elavil, tylenol, etc. were not working for me, the uro looked at me like I was crazy and then just brushed me off. Be proactive in YOUR health because your body belongs to you, not anyone else.

Jackie[/QUOTE]\


Way to go Jackie, I could not have said it better!!
Good luck with your surgery.
Jen

[jackiew75]

Thank you Jen! I will update you after the surgery! :woohoo:

[Charisse]

Please do update us. My Uro-GYN suspected urethral diverculitis but I had a hydro done and although my urethra is way more inflammed than my bladder I don't think he saw any pouches or pus like I was hoping for. I have to start seeing a new Uro now anyway though so I will ask him to review the pics from my hydro and see what he thinks.