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've been diagnosed with UD.. Haven't been scheduled for surgery yet but the pain is intense...was wondering if I could use a heating pad or something to help relieve the pain..meds are only lasting an hour at the most..I have a very high tolerance for pain and this is way off the charts for me!!! Any suggestions are welcomed..need of relief asap!!!!
October 15, 2016 - 4:58pmThis Comment
follow up question: how much UD surgery cost? does insurance covers it? thanks
June 15, 2016 - 7:22pmThis Comment
Hello Anonymous,
Your best option is to contact your health insurance provider.
A representative should be able to give you an estimate of the cost of the surgery and if your policy will cover all or any of the cost.
Maryann
June 16, 2016 - 9:03amThis Comment
i am planning to go in for surgery but sooo worried and scared. thanks to this messages i felt a little more safe and secure after reading all your comments.
June 15, 2016 - 6:36pmThis Comment
Hello,
April 1, 2016 - 11:00amI am 25 years old... I just received a call today that I have Urethral Diverticulum. I'm not going to lie, I feel really sad, I've had 4 surgeries on my breast to remove breast lumps; another surgery six months ago for a hernia removal and today Learn that I need this surgery, I can't do anything but think that my body is defective :( :( However after reading your comments, I feel less scared, thank you for that. Even though I am surrounded by people, I feel really lonely right now. My father died of cancer and I can't stop thinking if that will be my destination.. For the surgery, I have some questions, do you loose sensation for sexual intercourse, or does the vagina look 'weird' after the surgery or does it look normal? Can you walk or bike afterwards? Is there a chance of not becoming pregnant? I'm sorry that I am making so many questions, I am just really scared and confused right now. I will really appreciate any help!
Thank you so much and I wish good recovery and good health to everyone!
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I had surgery for UD 5 months ago. I thought after the surgey everything would be fine,...boy was I wrong. There were no complications during the procedure, in fact the worse part for me was being Catherized for a week. The original issue is gone, however now I keep getting infections. On top of that my Libido has decreased and the physical appearance of my vagina has been altered. I'm extremely pissed and confused. I am now in the process of working with my gynecologist to figure out what keeps causing infection. I also think I may have developed a fistula as a result of the surgey.
November 2, 2016 - 3:04pmThis Comment
Hi Anonymous, so sorry for situation your in at the moment, I just wanted to say i had a UD 20 years ago, I had it removed and life got back to normal all those things your worrying about didn't happen to me. Everything still looked and felt the same so try not to worry.
April 25, 2016 - 2:45pmOh and yes I conceived too,
Wishing you all the best
issy
This Comment
I'm also a 19 year old girl going through this and I am so tremendously scared
March 6, 2016 - 7:59amThis Comment
TO - 19 year old scared. I am the person who posted about my surgery in Nov of 2015, Kim. Don't be afraid. It annoying, but its not painful. You are asleep for the surgery, on pain med for a couple of days . But then once the anesthesia works its way out of your system you will feel normal. Carrying the cath bag around is annoying, but not painful. Just keep it up off the ground (don't drag it on the ground) and be careful to move it as you move.
March 6, 2016 - 12:47pmThe recovery takes awhile and its annoying to have the cath bag. But its OK. Its much better than being sick, having a constant infection, and being on antibiotics all the time.
Hugs to you.....it will be Good!!!
This Comment
Hi. Can you pls give me an idea how much the UD surgery cost? Does insurance covers it? Thanks
June 15, 2016 - 7:25pmThis Comment