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
Hi Anon - Thank you for writing. Could you please give us more specific information on what you mean when you say "all good sensation is gone from down there." Are you referring to the normal sensation during urination or are you referring to sexual sensation? When you say your doctor "would not tell" are you saying that he said he can't give you a specific answer because you are still early in the healing process or he refused to give you an answer at all or something else? The more we understand what you're dealing with, the more we can help you. Thanks, Pat
March 1, 2010 - 5:35pmThis Comment
I just had surgery for UD its been about ! month from surgery and it feels as if all good sensation is gone from down there is that normal? I'm also 19 years old im very scared that my nerves are damaged down there and i'll never be able to have good sensation down there. how long does it take to completely heal from this surgery? my doctor would not tell me
March 1, 2010 - 12:17amThis Comment
hi, i am recovering from Diverticulm surgery right now. I am doing ok, I had the pouch like cyst at the opening of my urethra and had it since I was 20 years old. I'm 40 now.
December 21, 2009 - 4:56pmdoing ok, had a good surgeon, at least i can say that so far, 4 days after the surgery. her name is Dr. Fleishmann in White Plains, NY.
This Comment
Hi Anon - It's good to know you're doing ok following your surgery. Will you keep in touch and let us know how your recovery goes? We wish you all the best. Pat
December 21, 2009 - 6:30pmThis Comment
Turns out that I do not have the condition. I am at a loss now, because my lower back is still killing me and the urologist i am seeing just put me on antibiotics for a full month. thanks for the useful information.
November 4, 2009 - 11:39amThis Comment
She has had numerous problems in the year and a half following surgery. I would caution you to ask about possible side effects. My daughter has been in and out of the hospital at least 10 times with what they now refer to as Chronic Pelvic Pain Syndrome. I can only assume it was a result of the original surgery, but I am not the medical professional. She has been seen by so many of them that I have lost count. Good luck with your treatment. Did they diagnose it through a VCUG?
November 3, 2009 - 8:23amThis Comment
Can u please tell me the name of the Dr at UCLA, I have just been diagnosed and would like to visit him. Thank you!!!
November 2, 2009 - 1:12pmThis Comment
I'm sorry to hear you're going through so much pain. Have you chatted with your primary care physician about what you're experiencing? He or she may be able to recommend a urologist in the Las Vegas area.
Another good resource is urologyhealth.org -- a division of the American Urological Association Education and Research. You just type in your zip code and a page will display doctors in your area. Will you keep us updated on your diagnosis and treatment?
September 10, 2008 - 8:09amThis Comment
Thanks for sharing this information! I just did some research on this topic...and there is not much information out there. How frustrating this must have been for you (above and beyond your daughter being in pain and consistently misdiagnosed).
For other readers who would like to learn more about this condition, one of the only sites I found that discussed this is at the Medical University of South Carolina:
http://www.muschealth.com/bladderhealth/health_info/urethral_diverticulu...
A few points to note from this site:
- "UD is a condition in which a variably sized "pocket" or outpouching forms next to the urethra. Because it most often connects to the urethra, this outpouching repeatedly gets filled with urine during the act of urination thus causing symptoms".
- Some people with UD have no symptoms, other shave extreme pain and discomfort
- "Since many of the symptoms associated with UD are non-specific, patients may often be misdiagnosed and treated for years for a number of unrelated conditions before the diagnosis of UD is made. This may include therapies for interstitial cystitis, recurrent cystitis, vulvodynia, endometriosis, vulvovestibulitis and other conditions."
Thanks, again, for sharing your daughter's story, as I'm sure this will help many women who have been misdiagnosed for years (as even the site mentions!). Laurie, I'm glad your daughter is doing well now!
July 31, 2008 - 1:32pmThis Comment