hi,
i am a 46 year old woman who has just had a bulbar urethoplasty surgery in London. I'm posting as this is a very rare condition and I couldn't find anything much about the condition and surgery online. if you have any questions on anything at all please ask. I had been self catherterising for over three years because of a stricture that stopped my peeing independently.
Hi Sarafurn,
I'm an older man who was left with strictures following two procedures for TURP. My strictures are very complicated...long and adjacent to the external sphincter, and perhaps at the bladder neck. In any event, mine caused high level incontinence that has persisted for over 16 months now. Blockage may be down the road, as two procedures to attempt to resolve the strictures have been unsuccessful.
I hope your surgery will be successful for you. I know from my research that strictures are not as common for women as they are for men. I recently traveled to the Center for Reconstructive Urology headed by Dr. Joel Gelman who is entirely dedicated to reconstruction for men. I know now that my condition is so complicated that there may not be a path to resolving the strictures and regaining continence.
I will share one piece of information that might be of interest to you. When bladder neck strictures are treated with urothotomy, injection of mitomycin C has be shown to be effective in keeping the strictures from coming back, at least for a much longer time.
Hi Glenn,
thankyou so so much for sharing. I will ask my consultant about that. I had the buccal mucosa urethoplasty on Monday at West Moreland St in London with surgeon Tamsin Greenwell, I'm home now. Hope your get some resolution
warm wishes
Sarah
Hi Sara, I too am in late 40's & had my 10th unsuccessful dilation recently. I have been suffering this disease my life long. It is gradually getting worse tho. My doctor is looking to do a buccal mucosa urethroplasty & im petrified! How was your surgery & was your recovery long?
Hi
Well I'm three weeks post op. I was home after two nights in hospital. My surgery was done by Tamsin greenwell at Moreland street in London. The surgery lasted around two to two and a half hours. The vaginal area pain that night was ok after being given dihydrocodiene and just became a soreness. The mouth/cheek can be painful mainly when I tried to eat solids I would recommend sticking to smoothies and meal related Emmy shakes which I got on prrscriptionsssny food just caused problems for the first five days, sleeping as much as possible speeded up healing loads. I'm due back in the next week or do for my second follow up as they were not able to take the catheter out yet as not fully healed, what are you most scared of? Please ask me anything else
Warm wishes
Sarah
Thanks Sara for yourspeedy reply. I am most fearfull that the Op isn't a success & I will be left with a permanent catheter. I have a large family (had 4 Csections)& very busy life, 3 weeks recovery is long. The pain I endure every day to pass water is tough but I don't know if I can risk having this Op. I am in Ireland & my doc says he will be getting a specialist from the UK to do it, even so, I have never been so afraid of surgery. Please update me on how your progress is when they take the catheter out.
Every good wish for your speedy recovery.
Hi,
i will ill keep you updated, I'm told the success rates are really good long term, Tamsin greenwell is the only surgeon to do it in the UK for women.
take care keep in touch
warm regards
Hi Sara, just wondering how your recovery is going?
Hello Sarah, I see it is 9 months since your surgery. I am wondering how you are getting on now. Can you share the pros and cons pleas? Dr Tamsin Greenwell has just been recommended to me. I live in Ireland. It's a very big decision whether to have the surgery or not.
Hello magicv, I am also in Ireland and contemplating this surgery. Have you had the surgery? How are you now and who did it if you've had it.
Hi Nettie
I can pee now I couldn’t for years because of my stricture, Tamsin Greenwell is an amazing surgeon, may be useful if you asked me specific questions s I don’t mind discussing anything however awkward etc ..,
Best wishes
Sarah
HI Nettie didn’t get your text
Warm wishes. Sarah
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Glenn
Thank you Glenn. I am very new to this.
Hi there Sarafurn , I am 24 and from ireland and was diagnosed with a urethral stricture 2 years ago and have had 3 dilatations the most recent one in june , after i stopped being able to urinate and had a catheter in for 6 weeks pre op and 3 weeks post op, and i am symptomatic already in august . My consultant has said that he doesn't reccomend the surgery as he would be afraid it would lead to further problems but i would love if you could please let me know if the surgery has been a sucess, and if you have had any complications since.
Your information would be greatly appreciated, thank you
jennifer
Hello Sarah
My name is also Sarah and I am awaiting this same surgery with Tamsin hopefully later this year. I am terrified and have so many questions.
perhaps you would mind being in contact with me to help with questions I have?
My email is: sarah@skatehut.co.uk
I would be ever so grateful
Hello. I know this forum is old but I am hoping by some miracle that you will see this and could maybe get in touch with me to help me. My name is Sarah and I am 39. I’ve been suffering with urethral stricture my whole life and for many chunks of time it’s really ruined my life. I have dilations done all the time but they are starting to need doing more often now and I can’t self cath either because it’s so bad. Even the nurses can’t do it. I’ve finally been referred to Tamsin Greenwell in London for a reconstruction. I don’t know how long the waiting list is but I’m on it. I’m so scared though as I know nothing about this operation and feel like I’m going in blind. My 2 urologists here in Birmingham can’t help me because they say that they don’t know much about it in females as it’s so rare.
I’d love to talk to someone who has been through it. Am I able to leave my number or email address in here? Sarah