Urethral diverticulum and fear of surgery?
October 31, 2011 8:18 AM Subscribe
I was recently diagnosed with a urethral diverticulum which bulges through my anterior vaginal wall. I hadn't noticed it at all until I went to a nurse for bacterial vaginosis, and she referred me to a gynecologist for what she thought was a cyst. The urogynecologist I met with sent me to get an MRI and suggested surgery to remove the pouch, since it is periodically filling with fluid and could cause complications (recurrent UTIs, &c.) if not treated.
I'm terrified for many reasons. The idea of having surgery at all is scary (I will be totally anesthetized), let alone surgery in a sensitive and delicate area that I'm afraid could permanently alter my sexuality. I've Googled the condition and surgical treatments multiple times, but I really can't find anything but medical literature, and nothing which discusses quality of life after the surgery. I will be on program of antibiotics and have to wear a catheter for several days. Many accounts of the surgery seem to imply that it is difficult and can lead to fistula or reconstruction of the urethra. If the diverticulum were bothering me, I would consider this surgery necessary. At present it's merely unsightly and a slight obstruction to intercourse.
I guess my question is, has anyone else experienced this? Have you had surgery to correct it? Am I worrying too much? I know that the outer 1/3 of the vagina is the most sensitive area, and I'm afraid that surgery there will reduce my enjoyment of vaginal intercourse. I'm young and I don't want to undergo an unnecessary medical procedure that will hinder my enjoyment of sex for the rest of my life. I've also read that it can lead to significant problems with incontinence, which is not currently a problem even with the diverticulum. The few anecdotes I could find on the internet referred to extremely long healing time (exceeding 8 weeks), blood transfusions, and bacterial infections. Right now I feel very scared. Any counsel is welcome.
I'm terrified for many reasons. The idea of having surgery at all is scary (I will be totally anesthetized), let alone surgery in a sensitive and delicate area that I'm afraid could permanently alter my sexuality. I've Googled the condition and surgical treatments multiple times, but I really can't find anything but medical literature, and nothing which discusses quality of life after the surgery. I will be on program of antibiotics and have to wear a catheter for several days. Many accounts of the surgery seem to imply that it is difficult and can lead to fistula or reconstruction of the urethra. If the diverticulum were bothering me, I would consider this surgery necessary. At present it's merely unsightly and a slight obstruction to intercourse.
I guess my question is, has anyone else experienced this? Have you had surgery to correct it? Am I worrying too much? I know that the outer 1/3 of the vagina is the most sensitive area, and I'm afraid that surgery there will reduce my enjoyment of vaginal intercourse. I'm young and I don't want to undergo an unnecessary medical procedure that will hinder my enjoyment of sex for the rest of my life. I've also read that it can lead to significant problems with incontinence, which is not currently a problem even with the diverticulum. The few anecdotes I could find on the internet referred to extremely long healing time (exceeding 8 weeks), blood transfusions, and bacterial infections. Right now I feel very scared. Any counsel is welcome.
I don't have any personal experience with the procedure, but I did go through some of the medical literature (probably the same stuff you googled up) to see if a nurse's reading would yield any insight (IAAN, but IANYN, etc.).
There are a variety of surgical techniques that can be used to treat this condition, but unfortunately they don't have very good data on which approaches have the best outcomes. The location of the diverticulum along the urethra seems to have some bearing on the likelihood of complications like incontinence or fistula, so it would be good to ask your doctor about the odds of post-surgical trouble in your particular case. It sounds like the surgery is more difficult to do if you get lots of UTIs while taking a "wait and see" approach, because the irritation can cause scarring in that area. But it also sounds like many people choose not to have surgery if they are not having any bothersome symptoms. So you'd be in good company no matter which way you decide.
I haven't been able to find any medical literature about sexual side effects after the surgery. I imagine nobody's done any studies, but your doctor may have some insight from following up with patients after surgery. You might also want to try asking on a health-related message board, like the Urology Message Board at HealthBoards (although they do say their site will be down for maintenance on Nov 1, FYI).
All your specific questions are all really good ones to ask the urologist who would be doing the surgery. If it were me, I would want to have a surgeon who has plenty of experience with the procedure being proposed. You can ask the doctor how many of these surgeries s/he's done, and how often there were complications. Ask if there's anyone in your area who does especially a lot of this kind of surgery, and see if you can get a referral.
posted by vytae at 8:52 AM on October 31, 2011
There are a variety of surgical techniques that can be used to treat this condition, but unfortunately they don't have very good data on which approaches have the best outcomes. The location of the diverticulum along the urethra seems to have some bearing on the likelihood of complications like incontinence or fistula, so it would be good to ask your doctor about the odds of post-surgical trouble in your particular case. It sounds like the surgery is more difficult to do if you get lots of UTIs while taking a "wait and see" approach, because the irritation can cause scarring in that area. But it also sounds like many people choose not to have surgery if they are not having any bothersome symptoms. So you'd be in good company no matter which way you decide.
I haven't been able to find any medical literature about sexual side effects after the surgery. I imagine nobody's done any studies, but your doctor may have some insight from following up with patients after surgery. You might also want to try asking on a health-related message board, like the Urology Message Board at HealthBoards (although they do say their site will be down for maintenance on Nov 1, FYI).
All your specific questions are all really good ones to ask the urologist who would be doing the surgery. If it were me, I would want to have a surgeon who has plenty of experience with the procedure being proposed. You can ask the doctor how many of these surgeries s/he's done, and how often there were complications. Ask if there's anyone in your area who does especially a lot of this kind of surgery, and see if you can get a referral.
posted by vytae at 8:52 AM on October 31, 2011
Anonymous, I have a friend-of-a-friend-of-a-friend who had this procedure and a less than optimal outcome. I could share with you also a sort of analogous decision that I've faced if you can memail me, or maybe you can ask the mods to post a throwaway email?
posted by gubenuj at 9:49 AM on October 31, 2011
posted by gubenuj at 9:49 AM on October 31, 2011
This is completely anecdotal, so please take it with a grain of salt. Roofus said above, "And also very very rarely they can conceal a cancer." This is exactly what happened to my relative. I hesitated to post this because the chance of this happening is so remote, but I can attest to the fact that it did happen to someone dear to me, and with a very sad outcome. Because of that, I personally wouldn't hesitate to have this surgery. If I didn't choose to have the surgery, I'd have my urogynecologist monitor it vigilantly.
posted by MelissaSimon at 1:54 PM on October 31, 2011
posted by MelissaSimon at 1:54 PM on October 31, 2011
This thread is closed to new comments.
There isn't a lot of really high quality information around on urethral diverticulae, even in the medical literature. My guess is that most doctors are completely unaware of the condition. Your presentation as a possible cyst is classic. I don't really know where to recommend for non-medical language information, but I do quite like this paper, with a case series and review, which was written by two former colleagues of mine.
Some things you need to know:
1. Urethral diverticulae are really common, and most are undiagnosed
2. The spectrum of symptoms is wide, and as in your case they can be completely asymptomatic
3. They aren't life threatening, but we don't know much about the natural history of them
4. The surgery is quite specialised, which is why you have been referred to a urogynecologist
5. In my experience the complication rate is low, and recovery time is reasonable, and you shouldn't expect persistent pain during sex
I am extremely sympathetic to the idea that an asymptomatic diverticulum should be left well alone (in fact in general, I feel like everyone should avoid all surgery until they really have to have it). But, having said that, I personally would probably go ahead with the surgery, as your urogynecologist recommends. It's kind of horrible to think of this little untreated pouch of urine, pus, and miscellaneous fluid. The diverticulum could grow, and a larger diverticulum is harder to remove (also very very rarely they can conceal a cancer). As with most of these medical questions, if your gynaecologist can't reassure you about the wisdom of their recommended treatment option, you should seek a second opinion.
posted by roofus at 8:40 AM on October 31, 2011 [3 favorites]