My daughter was misdiagnosed several times since January of this year and spent a night at the hospital in Connecticut on a morphine drip due to the pain.
She is a healthy 19 year old athlete ... she plays volleyball at Trinity College in CT. …
They kept trying to treat her for a UTI but all her labs kept coming out clear. As a result, she has been on every type of antibiotic for no reason. She came home to Los Angeles for more tests, returned to school in CT, agreeing to come back to Los Angeles again for Spring Break for a cystoscopy instead of going to Rome as planned :(
At this point, they believed it was probably "Painful Bladder Syndrome" for which there was no cure. They performed that operation at Cedars and the doctor ruled that diagnosis out, said there was nothing wrong and wanted to prescribe hypno-therapy.
At this point, I contacted the head of urology at UCLA … He told me that the only thing he could think it might be was a "Urethral Diverticulum". He saw her and advised her to have a VCUG done once back in CT since she had to get back for classes ... this is an x-ray taken during urination while being catheterized.
The doctor in CT who performed this procedure had the nerve to (with hostility) say -- , "You can thank your mother for putting you through this." She then had to call me with her tail between her legs when she confirmed the fact that, yes, there was indeed a Urethral Diverticulum.
They couldn't schedule the surgery at UCLA until early June but we were willing to wait because … the doctor had written the book on this particular surgery.
She had the surgery, was catheterized for another three weeks, wearing a bag strapped to her leg. She had several post-op complications but is finally feeling better this week. Six months of constant pain ... according to her, it was like a severe UTI ... like razor blades playing inside her. So we finally have another happy ending. Poor thing has suffered tremendously with this whole ordeal. It is rare for someone under the age of 40 to contract this, but it can happen.
To find out more, visit
http://www.muschealth.com/bladderhealth/health_info/urethral_diverticulu...
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Add a Comment39 Comments
I had ad an UD about 3 years ago. My third child was 3 months old and I was having vaginal discharge that was yellow and sticky like puss. It also felt like tremendous pressure on my vagine, NO symptoms or pain associated with a uti. When finally took a look it looked like a prolapsed uterus but ended up being a prolapsed uteru. Surgery went fantastic but recovery was awful!! Weeks with a catheder strapped to my leg and feeling it in.... It's been three years and hasn't returned, to this day we still don't know what caused it.
February 20, 2012 - 7:33pmThis Comment
I am 23 and have just been diagnosed with UD. I have had a white mucousy discharge daily since I was 10. I had pain with intercourse from 18 onward with my gyno telling me it was 'vaginisums' which means 'all in your head.' Every urine sample I gave my entire life said that I had a UTI and no one thought that was suspicious. I saw 3 gynos before being sent to a urologist today. He told me it was UD and that I will have to have surgery. I am enraged that it took over 10 years to get diagnosed. I have suffered through urinary frequency, urgency, pus drainage daily, and pain my entire adult life because no doctors knew what this was. My symptoms screamed UD. I am afraid of the surgery and the prolonged cathiterization, and I am afraid the UD could return after surgery. I also have terrible genetics and am finding that UD is a pregnancy risk factor so I would like to get my tubes tied during the UD procedure. Has anyone done this? Thank you for sharing your stories, despite being glad to know my problem is fixable-I still feel alone as I have these past 10 years of the struggle. I write for Yahoo! and intend to do a womens health article on this during my ordeal. http://contributor.yahoo.com/user/1458133/candace_matthews.html
February 20, 2012 - 4:55pmThis Comment
Hi -
I had my UD surgery on 8/22. I originally work up two weeks prior to my surgery with a strange sensation and pressure in my vaginal region. The first gyno I went to did not know what to make of it. She referred me to a urologist. The urologist was strange, he seemed even scared to exam me. I was very frustrated b/c nobody could tell me what was going on. My sister recommended her gyno and upon arrival the nurse diagnosed me in minutes. Then the gyno confirmed. They did an ultrasound and referred me to a gyno/urologist. The gyno/urologist confirmed the diagnosis on a Wed and asked me to schedule my surgery for the following Monday. I didn't have time to freak out, it went so fast.
Came out of surgery okay - took a little longer than they anticipated (2.5 hours) in surgery. My doc also could not find the neck of the diverticulum despite the extensive MRI process (over an hour of pix with a shot of something to make it easier for them to see my organs), so I'm also a bit worried. Doc said if urine makes its way thru the neck of the diverticulum into my body, I would be so sick that I'd need to be hospitalized. So, I would know.
Had some pain coming out of anesthesia, but was given something that made me feel better instantly. Was sent home w/ a catheter (on for day time and one for night) along with a strong narcotic, 600mg ibuprofin, antibiotics, stool softener. The day after surgery I was okay, but the catheter wan annoying and it irritated my insides. I took my ibuprofin and not the narcotics b/c the pain was not much.
The following day, I woke up and had a very strong bowel movement which dislodged my catheter. So, had to go in to see the doc again. They filled my bladder with saline and asked me to pee. They said if I can produce over 200cc's then they would allow me to go w/out the catheter. I produced 325cc's. So, I went home w/out a catheter. Today is Saturday evening and I'm feeling no pain, but still bleeding a little bit - only enough to necessitate a panty liner.
I have my f/u appt w/ the doc 9/7. Guess I'll know more then. Hope this helps someone...
August 27, 2011 - 5:33pmThis Comment
I too am a 19 year old diagnosed with "Urethral Diverticulum." I went to my family physician, gynecologist and now I am scheduled to see a urologist in another month. I am very scared and worried about the surgery that most likely awaits me. If there is any way I could talk to your daughter or you about what she went through I would greatly appreciate it.
Thank you,
March 18, 2011 - 5:28pmJanelle Gibson
This Comment
I am 20 years old and have just been diagnosed with what they believe to be UD. As I was reading your daughters story it seems as though I was reading my own. For the last year I've been seeing various urologists, who much like your daughter claimed that I was having recurrent UTIs, and then once I'd been on every possible antibiotic they began to believe I had IC/ Painful Bladder Syndrome. After much pressure from my mother and I, we got an MRI in which they found a very small cystic structure that they believe is UD. Its been more than a year since my first emergency visit with pelvic pain, pain during urination and pain during sex and I am just now being transferred to a specialist with UD. As I am waiting for my first appointment with this doctor I am also seeing a gynecologist who despite my UD believes that I have endometriosis. I am worried that with the UD surgery which will hopefully occur within the next few months, my symptoms will continue since it seems to treat the cause of the symptoms not the cause of UD. What has been the recent Doctor's explanation of your daughter's recurrent problems? Have they still been connected to UD or endomentriosis or the other pelvic condition you mentioned? I completely sympathize as my life is consumed by pain and anxious waiting for doctor's appointments.
August 31, 2010 - 1:47pmThis Comment
Hi
I am a 30 year old women who recently went through surgery for Urethral Diverticulum exactly 5 weeks after my c-section....This all started about two years ago; in total [including this time], the UD bump occurred 3 times on me. The first two times the bump (between my urethral and vagina) burst, fluid and pus came out. The doctors treating me at the time just gave me anti-biotic and that was it. I did some research myself and found that UD was the symptoms I was having. So I requested sonogram and MRI done on me. My current doctor couldn't confirm whether the test shows a cyst or UD. But a surgery was scheduled anyway to remove it. I woke up and was informed that it was in fact a UD...now I am in my recovery stage. I've been wearing this indwelling catheter for 8 days already...still 5 more to go...
Did you get your surgery yet? How is recovery for you? Any post-surgery complications?
December 11, 2010 - 2:11pmThis Comment
I just have the UD surgery and I am 30. The UD was identified via a pelvic exam from my ob/gym. At first from the MRI, it appears to be a vaginal cyst but the surgeon believes it was UD based on the muscle layer it appears. However, she can't find the communicating neck of the UD to the urethral. I didn't need catheter but I am worried that it will come back since she can't find the communicating neck. Anyway, it has been day 3 since my surgery, the pain and spot continue but not so bad.
March 11, 2010 - 9:47amThis Comment
Hi,
Would you please till me your post-surgery experience? Were there any complications? I had my surgery done recently exactly 5 weeks after my c-section. I am still wearing the indwelling catheter and it won't be off till another 5 days. Thanks
December 11, 2010 - 2:15pmThis Comment
I like your daughter am very young 24, I had my UD removed three weeks ago at UNC Chapel Hill ( my OB referred me to them who knew right away what it was)..after surgery they said everything went great , they found it right away and removed it. Just had my catheter out last week , the first week after surgery was miserable , worse than child birth but I am pretty sure the UD is coming back, there is no way I will ever have that surgery again. I go in three more weeks for my 6 week post op, we will see then.
March 1, 2010 - 7:00pmThis Comment
Do you have an update as to whether the UD came back or not? My Gynecologist believes I have the same condition, but I don't want to undergo such a terrible aftermath if it's just going to come back.
March 19, 2011 - 8:10amThis Comment