Hi, I just wanted to share my story with others as I have been able to find very little information posted on the net from other woman with urethral diverticulum.
I am 44 years old. I have never had a UTI in my life. About 6 weeks ago i felt a strange sensation after peeing and then burning. It got worse as the days went by. I went to my GP who put me on antibiotics although no infection showed up in a pee sample. The pain got worse it was like a terrible heavy period dragging sensation that would keep me awake of a night. I googled my symptoms (as you do) and diagnosed myself with a UD. I saw the GP again and mentioned i think i might have a diverticulum, she went mad at me and told me not to be silly. My pain got so bad i went to Hospital Emergency, they put a catheter in straight away as by that stage my urine flow was getting blocked. I was admitted and had an ultrasound and MRI that diagnosed a Urethral Diverticulum that was so infected with a big abscess within it. I was sent home with a catheter in for 2 weeks to wait for the infection to settle. I needed a urogynacologist because the diverticulum was bulging into the anterior vaginal wall so badly it had almost completely filled in my vaginal space. I found a great URO/GYN AND she removed the catheter last week and i had a cystoscopy a couple of days later so she could see where the diverticulum connects with the urethra because the higher up it is above the sphincter the more dangerous it is for incontinence problems. My diverticulum is a horseshoe shape and is very complicated so she is going to do a marsupialisation until it gets small enough to do a diverticulectomy. The marsupialisation is where they open the diverticulum up into the vagina so when you pee it will also come out your vagina instead of filling up the diverticulum. This only works if the UD opening is below the urethral sphincter otherwise pee will just flow out all the time. My surgery is booked for the 3 June 2011 so I will let you know how i go. I am not sure what the post op recovery is. Hope this helps someone like me, that likes as much info as possible and googles everything!
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I had my UD operation 3 weeks ago. I had it for a long time but was misdiagnosed in my previous whenever I visit my doctor when I had pain , done MRI didn't read The diverticulum, I had cystoscopy, ultrasounds (transvaginal) it say vaginal cyst yer it was huge lump coming out on my vagina,i gave birth OB perform marsupialization After 6 weeks it was back big lump I was sent to urologist again he suggested for a x-ray(voiding with contrast) positive UD huge 3.5 by 2.5 I was scheduled June 6 ( 3 weeks from now) operation was no good I lost blood my hemoglobin drop stayed in hospital 3 days... Went home with catheter for one week before catheter removal went for voiding contrast test was ok... Next day went back to hospital for Cath removal...now when I look at it it seems there is a lump again.... (Sigh) I am 40 years old it affects my sexual relationship too I am married. Anyone has dsame issue.. how r u all?
June 24, 2017 - 7:53pmThis Comment
I know th is is an old thread, but it was nice to read about other experiences. I'm 26 years old and currently 7 months pregnant. Being pregnant definitely complicated the diagnosis because everything I complained about they attributed to being pregnant until I finally came in which what I called a huge lump in my vagina. Before they say it they said oh probably just a cyst and we're completely shocked when they actually looked. It was infected too so no I'm on an antibiotic. I see the urogynecologist a week from today (sadly the soonest they could get me in). I'm soonest anxious to find out more about this and what the plan is especially since I'm pregnant...
May 16, 2017 - 6:00amThis Comment
I have the same issue. I'm 17 weeks pregnant and have a u.d. And was on anti biotics... And unfortunately no one will help me. No surgery no relief :(
April 11, 2018 - 10:46pmThis Comment
I just found out I have a UD. I have chronic pelvic pain that has worsened these past few months. Have recurrent UTI s and have IC. Glad I'm not going crazy but scared of the surgery. Had hysterectomy at 21. I'm now 50 and tired of being in pain. My UD showed up on an MRI looking for adhesions. Any advice would be appreciated.
December 6, 2016 - 6:46pmThis Comment
Hi All
I know this is an old post therefore i may not get any response at all but i was just wondering if you have had any recurrences or further trouble since your op 4/5 years ago? I am only just 25 and have been diagnosed with a UD in the neck of my bladder which is very large & in an extremely awkward place. My consultant is now trying to source the most experienced surgeon he can find as none of the surgeons at my hospital can complete the surgery i need and im very high risk of being incontinent for life. I've been so ill with this, sever upper UTIs which have resulted in me being hospitalised 5/6 times in a few months. Passing urine is so painful and then instantly after i feel so swollen and heavy almost like the pain & feelings i get with endometriosis which i also suffer from. Any info/advice would be great as i cant find much online & dont know anyone thats even heard of UD before. Im so young and facing massive life changes...
Thank you
December 2, 2015 - 5:09amGemma xx
This Comment
Hi Gemma, i am the orginal poster just saw your comment. Sorry to hear of your problems. For around 4 years i was completely fine then i had another one come back or the same one? I had another MRI as i knew the pain straight away so asked the GP for one. She put me on antibiotics straight away and sent me off to my gynaeurologist here in Perth Australia. She said i could have more surgery but again higher risks of incontinence after surgery as the more they operate your chances of full recovery minimalise each time. I have decided to not have surgery and for the last 12 months when it flares up i take Tramadol and panadeine forte for pain relief. I will only have surgery when it gets so big i have no other choice. Yours sounds like its very large and if you have been hospitalised with the pain then you should definitely go the surgery. It is worth it if it works even for a few years. Let me know how you go. Kind Regards Sharon x
January 27, 2016 - 2:57amThis Comment
Hi Gemma xx,
I don't want to go through to many detail regarding your matter, because I'm not a doctor. I can only share my experiences with you. I had a large UD in the neck of my bladder for years. I went back and forth to doctors, complaining of pain, only to be given medicine. No one could figure out what was going on with me. Finally, I found a doctor that identified my problem, as a large UD rapped around the neck of my bladder. She told me that I had a very complicated case and no one in my State could do the surgery I needed to fix the problem. My doctor at the time referred me to the University of Pennsylvania, to me with one of the best surgeons in that field. I met a woman doctor there at the University and she assured me that I was going to be all right. She went as far to tell me that she had preformed many UD surgeries.
I don't want to tell you her name, because I'm not sure if she would be the best doctor for you. But I will say check her out for yourself. The only thing I can tell you, is people with extreme UD cases come from all over the country to the University of Pennsylvania in Philadelphia PA, seeking this doctors help.
I don't know which State you are from, but I hope it's near the University of Pennsylvania, located on 8th and Walnut in Philadelphia PA. Google it to make sure I'm giving you the right street address. I had two surgery with in a year. Shorty after my first surgery, I started to experience the same kind of pain once again. The doctor didn't believe it was another UD, but she didn't take any chances and order a MRI.
To everyone surprise another had grown back in a short period of time. The doctor couldn't understand how it grew back so fast and so large. I didn't know what to think anymore.
It's going on two years, since my second surgery and the pain is back. I had another MRI taken with contrast recently and the results showed another UD.
This is the three one with in two and half years. I'm waiting for the doctor to come back off her leave of absent in late February 2016, to find out the next move.
I hope I've given you enough information to call the University of Pennsylvania to find the name of the only woman doctor that specializes in UD surgery. I hope you understand, why I didn't just come out with her name. The verdict is still out for me, so I can't say she is the best doctor in the field, until I find out why my UD keep coming back. I know she is one of the only one in the State of Pennsylvania that preform extreme UD surgeries. I want to believe that she is one of the best and will soon take care of my problem once again. I will keep you posted.
January 24, 2016 - 7:43pmThis Comment
Hi All
I know this is an old post therefore i may not get any response at all but i was just wondering if you have had any recurrences or further trouble since your op 4/5 years ago? I am only just 25 and have been diagnosed with a UD in the neck of my bladder which is very large & in an extremely awkward place. My consultant is now trying to source the most experienced surgeon he can find as none of the surgeons at my hospital can complete the surgery i need and im very high risk of being incontinent for life. I've been so ill with this, sever upper UTIs which have resulted in me being hospitalised 5/6 times in a few months. Passing urine is so painful and then instantly after i feel so swollen and heavy almost like the pain & feelings i get with endometriosis which i also suffer from. Any info/advice would be great as i cant find much online & dont know anyone thats even heard of UD before. Im so young and facing massive life changes...
Thank you
December 2, 2015 - 5:09amGemma xx
This Comment
Thanks for posting your experiences. I'm 43 and have recently been diagnosed with a urethral diverticulum via an MRI. Mine is small but highly symptomatic. I've had 6 months of fluctuating UTI symptoms, sometimes so severe I've been unable to sit or walk. Awful. I'm in the process of finding the most experienced surgeon I can. My diverticulum is in the mid urethra which I'm told is difficult to operate on as its surrounded by important muscle structures. Higher risk of complication post surgery.
I would be very interested hearing from in anyone who has had the surgery and how you fared postoperatively.
I will post an update to advise of my progress.
Apparently quite a lot of these procedures are performed but there are very few accounts from patients regarding their recovery
Anna
July 9, 2015 - 6:25pmThis Comment
Hi all,
I am a 46 year old female who is 5 days post op froma urethral diverticlum that had a small stone inside. Took the docs forever to find my problem. Actually had a hysterectomy 2 years back because they thought that would resolve my symptoms. Turned out it was a diverticlum which was coincidentally found on a CT scan for a completely different reason. So here I am 5 days post op with a Foley catheter for at least 2 week. Pain is minimal. I have more discomfort than anything else due to the catheter. Found out that by walking around it moves and causes friction which leads to an awful burning sensation and the urge to urinate which I should not feel since I have a catheter. Also have some urine which seeps out into the toilet when this happens. Not too sure if that is normal. Other than that I do have some blood but not a huge amount. Will be making a 2 week follow up appointment this morning with my Uro/gyne. Not sure if it is best to stay on bed rest. Anyone have info please let me know. Like Allyson mentioned not too much info out there on this subject.
Will keep you posted.
July 30, 2012 - 5:28amThis Comment