Urethral Diverticulum in my 19-year-old daughter
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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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!
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?
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!!!
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?
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.