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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I am laying in bed recovering from this as I write this. As others have said, the surgery is OK the recovery sucks. It took them three years to diagnose my diverticuli (and three urologists, the first two said I was being a baby). It was diagnosed 9 years ago....and I treated it with antibiotics all that time, first going on and off them as needed (usually 3 times a year) and then in the last couple of years taking antibiotics once a day. Finally, I had too many issues with the medication, and hoping that the surgery had improved over the years....I found a surgeon and did it. My diverticulum sits up high, below the bladder, and was shaped like a cashew nut, wrapped around 2/3 of the urethra, with openings into it from both ends of the diverticuli.
November 25, 2015 - 3:31pmSURGERY - He went in through the vaginal wall, the diverticuli was infected (the urine test said it wasn't - ha ha - its always said it wasn't infected - and my white blood count wasn't that high - so they misjudged). The diverticuli was choking the urethra, so it was a complicated surgery to remove it, and then to be careful not to spread the infection. This was Hijaz at University Hospitals in Cleveland, OH. Because of all that I am getting a catheter for 3 weeks (SUCKS!). I trust him, but I had some issues with his staff (such as misjudging the infection). But he is very good, so he is a big part of why I finally decided to go through with this.
POST SURGERY - I haven't had any pain, nor any bladder spasms. I was constipated, and after taking the pills he gave me, and then adding Miralax and Castor Oil, was still not going. So I took something the pharmacist recommended - a fizzy sour drink guaranteed to clean you out. And it did, after three hours. I have been eating light, mostly soup, but once a day I might have half a sandwich. Lots of liquids!! Very important to keep the urine clear and moving.
The first 3-4 days I had vaginal bleeding (light). Then it stopped. I laid around most of the time, kept the night catheter bag in place so as not to be changing bags (I stayed at home). I would get dizzy when I stood up for very long. On the 5th day I was moving around more, and that night I had deep red and dark red vaginal bleeding, I think the "scab" came off. It went away the next day.
OVERALL - I am not leaving the house for a full week. I am going out tomorrow for Thanksgiving, going to switch to the small catheter bag for that. Then low key again for the weekend and the following week I will have to go to meetings.
TIPS - I ordered larger catheter leg bags on Amazon, 32 oz bags, the ones the hospital gave me I will have to empty every hour. You will need one night bag a week (they wear out too) and then depending on how often you are going lots of leg bags. You can clean the bags out, but its very very dangerous that you introduce an infection into your bladder during this, by contaminating the tube when you are chaining the catheter to a different bag. So I am choosing to use new bags, and not change that often.
I also am making a belt (you can buy them online, but its not complicated to make one) that will help hold up the leg bag if it gets heavy (the elastic straps around your legs are not that strong). Its modeled after the ones I saw online, nylon strap around you waist, two pieces that come down and loop (with velcro) over the elastic straps of the leg bag. When I am in mtgs next week, I can't always just walk out to empty it. So the small leg bag they gave me wont work. I also took a couple pair of leggings and cut a slit from my crotch, horizontally over about 5 inches to where the catheter tube is "glued" to my leg. Then I stitched all around the edge of the slit / hole so it wont unravel (leave a little give for the stretchy fabric). So when I pull the leggings on, I can weave the bag and tube through the hole and hang the bag on the outside of the leggings. Then wear a dress or long tunic over it all. Its Ohio, and its cold.
Also, for me sitting upright where the tube comes out was uncomfortable. So I used some of those travel neck rings (for airplanes, to wrap around your neck) that I sit on so that my hips bones are on the pillow, and the center hole is open beneath the tube/catheter so I am not sitting directly on it. That is much better!!
Kim K - I will watch this forum, if you have any questions let me know.
This Comment
I had same surgery. The problem I am having is voiding (pee) after they remove catheter. They removed it 3 weeks after surgery and I ended up in the er with 900 ml of urine retention in my bladder. I was having severe pain similar to labor. They put catheter back in for a week and removed it again still could not go severe pain. So now my catheter is in again for a week. Did you have this issue?
November 29, 2015 - 12:19pmThis Comment
Could post the name of the doctor who was head or Urology at UCLA and did the surgery for your daughter. I need to have the surgery as well. thank you
February 13, 2015 - 4:27pmThis Comment
I have to have the surgery to remove my UD. I am worreid about having the cathetar in. Does everyone have to have one?
November 5, 2014 - 1:55pmThis Comment
Nope I just had this done and my surgeon told me before surgery I might wake up with or without it it can be from 1 day to 6 weeks depending on how the surgery went and how much the actual urethra was touched during the procedure . Had severe bladder spasms with the catheter I had it for 10 days. Just got it removed on Friday and i couldn't be happier good luck !
March 3, 2015 - 9:54pmThis Comment
I was 18 at the time. Its not a condition where you can comfortably ask your parents or gfs q's, seek for help or answers. so I went to three doctors to find out what that strange lump bugging out of me. (Pus white green and even black at one stage). 3 gp was not able diagnose my condition so they end up saying its an UTI.Finally the next meet up with a new GP that actually thoroughly examined me - referred me to see a specialist in gynaecology. Who said it was a UD. The pouch was 4cm in size. The risk of having this surgery it might affect the urethral line. I ended up going through with the surgery. Had the cathe in me for a night. Left on the night because my parents are strict - didn't know I had the surgery. My Parents are ones who will blame themselves if anything was wrong with me or happened to me or exaggerate the situation more than it really is. Didn't want to worry. Mind you I told them at the age of 25 about the surgery and they burst into tears. And I was fine after the day of surgery. slight pain but bearable coz I left without asking questions or hearing the nurses out. I just took panadol. I had the snow trip on following day. so I went the next morning. So I went out as normal. Even went toboggan and that was fine. My recommendation to teens stay in hospital, let the docs monitor you, rest in bed, usually docs would want the cathe in for 3- 5 days, when you urinate after you take the cathe - do it slowly, expect slight bleeding for 3 or 4 days the after operation. Remember to go back to see the specialist after two weeks for check up & att least 3 times after that and then every 6 months from then on. I'm 29 now and the pouch reappeared this time it's not filled up with pus or hard just more like hanging skin. I have slight pain like a sharp stitch when I'm constipated and ready to open my bowels, it aches in winter,doesn't have much feelings when you have intercourse because most of the nerves were damaged. I have a heavy feeling of my female organs below collapsing. So here goes to the specialist again. I will want to have gives after a year or two . Already I have sharp pain around the operated area when I'm opening my bowels (only when constipated) wonder If I will be able to give birth naturally or is it better to have a c sections. I have high chance of having twins - runs in both family. So I can imagine the pain.
July 13, 2014 - 10:13pmThis Comment
I had my surgery about a month ago, I had an unusual UD. I swear I've had that thing for at least a year and a half but my gyno said she would have noticed it- it was slightly larger than an egg right on my urethra. I had NO symptoms except I could feel it move if I did a move of - like touching my toes. Mine was thought to be a gartners duct cyst, only in surgery did they see that it was attached to the urethra and had caused a slight UD. The odd thing was that it was filled with embryonic fluid.
Personally, I had a fantastic surgery. I did go to a Urogynecologist who really specialized in all vagina/urethra issues. I had the catheter in for 5 days, I called it my pee purse. Honestly, I didn't mind it. It did feel like I was tethered bizarrely to furniture from time to time- yes, I didn't notice a catheter to the point I would get up and walk away from it. Before surgery I prepped by recording a lot of TV shows in advance, learned how to crochet, and stocked up on yarn and liquids- post op sat in a recliner with some pain meds, tv, crocheting and some diet cream soda and enjoyed myself (you don't even have to get up to pee). Best week ever.
I'd say if you are scared about loosing sensation and complications- take the time and find an experienced specialist. It's worth it. :)
November 4, 2012 - 9:39pmThis Comment
Who did you go to what doctor?
January 5, 2016 - 6:47pmThis Comment
Hi I know you posted this a while ago but I was wondering if you would mind having a chat/giving me some advice on this topic. I have the same thing and waiting to undergo surgery. Very scared and feeling totally lost with limited info. Thanks x
July 29, 2015 - 5:32amThis Comment
I have just had surgery for this and it was absolutely fine. No pain after, just taking paracetamol as a precaution. However, am looking forward to having the catheter removed just so I can get back to normal. My surgeon was great - she explained in great detail what she wad going to do and even drew me pictures. She ended up having to take a bladder biopsy, and I am now awaiting the results.
August 23, 2015 - 2:51pmThis Comment