scar tissue at urethral opening

[momto4kids]

My 7yo DS has been complaining of pain when he urinates so we took him in to see our family Dr. He tested NEG for any infections and when she further looked she said he had a narrow opening......so today we saw the Urologist.

Turns out he has an overgrowth of scar tissue at the opening as a result of his circ ~ I left almost in tears because of what we did to him. The Dr is suggesting surgery to snip the tissue. I asked about it recurring and he said this happens in 1% of cases. I also asked about letting it be until he is older ~ what would happen. No real answer since he said most are taken care of at a young age. My DS wants to have the surgery since it hurts him whenever he urinates and we respect that. My DH who usually questions all Dr's is on board also.

Is there any other information that I am needing??? I feel so bad for my DS, he has so many other issues and then this on top of it (which we had CONTROL over).

My DH did say on the way out of Children's that at least we knew better this last time and did not make the same mistake.

Dana

[carriebft]

This sounds like meatal stenosis:

http://www.emedicine.com/PED/topic2356.htm

(it actually happens in 7-10% of cases)

Surgery to make the opening larger is definitely needed if there is pain and whatnot going on and he does have a diagnosis that is certain of this.

If you are still really uncomfortable with the idea of surgery, maybe get another opinion first before proceeding , but I would do that fast because you don't want infection and whatnot occuring from the small opening.

I know some other moms on here have had to have this surgery done, hopefully they will post to try and alleviate some of your fears. s

I hope he is feeling better soon!

[glongley]

Dana, I'm so sorry your son (and you) are going through this. What you are describing is called meatal stenosis. Contrary to what the urologist said, the article on meatal stenosis at eMedicine states that the rate is actually more like 9-10% of circumcised boys, and is exceedingly rare in intact boys. It states that it is the most common complication of circumcision (though unfortunately, this complication is rarely mentioned to parents). It also covers information about the surgical correction, called meatotomy.

http://www.emedicine.com/PED/topic2356.htm

If your son is having pain, it sounds like the appropriate treatment. Especially if he is emotionally receptive to having it done. It's not going to fix itself, with the scar tissue there. Can't find but I believe I have read that about half of boys who develop this condition need to have surgical correction.

I know there are other moms who have gone through this here.

I know this may not be a top priority right now, if you feel inclined to write a letter of feedback to the practitioner who circumcised your son, I would encourage you to let him/her know of the complication and request they give better information for parents considering consenting to circumcision. Doctors need to get this feedback to change their practices, otherwise they never hear of the outcomes that happen later, and how people's lives are affected.

Best wishes to you and your son, Gillian

[kittywitty]

My son also has this. The scar tissue is so bad it actually was almost entirely closed for awhile. He had the surgery and I suppose it's helped a little, but not a lot. :

[momto4kids]

Thanks so much for the feedback! I feel a bit better knowing that this is a legitimate reason for medical intervention. I was just worried that it would be an unneeded intervention and I really don't want to put my son through more stuff.

Dana

[momto4kids]

Originally Posted by kittywitty

My son also has this. The scar tissue is so bad it actually was almost entirely closed for awhile. He had the surgery and I suppose it's helped a little, but not a lot. :

How old is your DS? My worry is that he will have rescarring and have to go through this again.

Dana

[Frankly Speaking]

Originally Posted by momto4kids

Thanks so much for the feedback! I feel a bit better knowing that this is a legitimate reason for medical intervention. I was just worried that it would be an unneeded intervention and I really don't want to put my son through more stuff.

Dana

I'll agree with the others here. It is meatal stenosis and it will not self resolve. It must be addressed.

This happens with between 9% and 31% of circumcised boys but is virtually unknown in intact boys. The danger is that it can become so severe that it blocks the flow of urine sufficiently to cause bladder damage or to back the urine up into the kidneys causing kidney damage. As you have seen, it can also be painful to the child.

It is essential that you demand anesthesia for the procedure. Many doctors perform the procedure with no pain management at all. This is nothing less than genital torture for the child. Make sure you are in the room to watch the anesthesia being administered and be sure sufficient time is given for it to take effect, 15 to 20 minutes.

There is a possibility of recurrence in the future and there is a possibility that the underside of the glans will be susceptible to irritation and infections throughout childhood. This is due to the termination of blood flow to the area as a result of the circumcision terminating the artery that feeds oxygen laden blood to the area.



Frank

[Microsoap]

My 25-year-old now-ex-boyfriend (still my best friend) has it. Early on in our relationship when things got sexual, we were comparing penises and he asked me why I had such a large opening (I'm an intact male) and I had to level with him and tell him what he had was metal stenosis, a complication from his male infant circumcision and what I had was... well, normal. 10% of all males circumcised as infants will have some type of complication (they think/they're lied into believing this will avoid "future complications" by doing it as an infant when it's actually very much the other way around!!!!!!) and this one of them. His 'pee slit' is actually quite tiny.

I'm also sorry you were lied to by the doctor with the "1%" b.s. number. Unlike skin bridges which are an unsightly complication, metal stenosis is a serious one internal-- as well stated by Frankly Speaking-- which needs to be resolved, despite the further invasive surgery and ultimately, further damaging of nerve endings resulting in decreased sensitivity for your son. While his urethra will be wider, scar tissue will form. I hate to sound so gloomy, but this is the long-lasting complications doctors NEVER mention when they state the "problems" avoided by doing the circ shortly after birth.

[Jane]

I thought the 1% the doctor spoke of was the risk of reoccurance after it's taken care of, not the rate of incidence.

I do think it's important to involve your ds in the decision making here - after all, it's his penis, and he's certainly old enough to participate. Frank's advice about anestethia is good, too.

[Papai]

Sounds like meatal stenosis. So sad.

[fruitful womb]

My ds had meatal stenosis and what you're describing is A LOT like what he went through.


Ds had a procedure with topical anesthetics, emla. It didn't do a damn thing as far as pain relief. He freaked out, even ran to me crying, "Mama that completely freaked me out." He was 4 when this happened.

Its returning, but not to the point of needing more surgery. I hate the thought that maybe it'll get worse and he'll HAVE to have surgery again. I HATE that doctors don't tell you this is a complication when "selling" circumcision.

Its IMPERATIVE that you let the doctor who circumcised your ds KNOW what he/she did to your ds.

After he has surgery, my advice to you is to purchase whats called second skin from spenco. Make sure he heals. The opening absolutely NEEDS to be protected while healing!!! Otherwise, it'll just close back up again.

I didn't use this on my ds and wish I had. I found it long after his surgery. In fact, I was going to post a thread asking advice about putting it on him now (he is 7yrs old too) as a protective barrier. This is something that a foreskin is designed to do in the first place. I don't want to hijack your thread, honest and I'm really shy about posting threads but I'm going to anyways. right now...

I know what you're going through. Its awful. I do know it will help if you make it known how wrong this is to the doctor who perpetuated this problem in the first place.

[Bm31]

I had the procedure for meatal stenosis which happened following my re-circ at age six. Thirty-some years later while being treated for kidney stones I was termed by the urologist as still having mild meatal stenosis. He said it was common for the opening to tighten up again even after the procedure. I don't have any day to day issues from it (I would guess a smaller urine stream than average), but it did create some discomfort issues when he had to use a probe to remove a stent. I would assume the probe was a standard size that would work on most men, but with me he had to use what looked like a medieval torture device to spread the opening and get that inserted. It also makes wonder what would happen if I needed a catheter. Circ....the gift that keeps on giving. :

[Frankly Speaking]

Microsoap, and Bm31, I have a question: Sometimes an indicator that meatal stenosis is going to happen is a frenular area that is very susceptible to irritation and infection in children. Mothers describe it as prone to redness and irritation and sometimes weepiness that they often blame on wet diapers but also on swimming pool chemicals, bubble bath and other suspected irritants. Indeed, during the first half of the 20th century, doctors put the blame on mothers for not changing their babe's diapers quickly enough but it is now known that has little or nothing to do with it. It does appear that the condition improves with age but that may not be so simply because I don't think there has been any research on the issue. Have either of you noticed any tendency toward irritation of the frenular area as adults? Anyone who is intimately familiar with a man who had meatal stenosis can jump in here as well!

Apricot, I don't think anyone knows the incidence of reoccurance of meatal stenosis. The incidence of first occurance of this condition is only an estimate and is not accurate as evidenced by the 9% - 31% range. I've never seen anything about second occurance. Even the statistics of first occurance could be very wrong. Dr. Paul Fleiss reports the incidence in his patients at 60% and I suspect his numbers are so high because he is very well educated about circumcision and meatal stenosis and knows that it is a complication of circumcision. As such, he eliminates intact boys from his statistics. Most doctors do not know this and would be expected to include intact boys in their statistics. Depending on the area, this could make a huge difference in the reported rate. For instance, in a west coast area where only 30% of boys are circumcised, if all boys were included in the survey the incidence of meatal stenosis would be about 45% less than the national average. Likewise, in an area such as Iowa or Nebraska where the circumcision rate may be as high as 70% - 80%, the reported rate would be much higher if intact boys were included in the results. You also have to factor in that these boys may not first seek treatment until they are 6 to 10 years old and until that time, would not be included into the statistics. To get accurate results and see the full effect of meatal stenosis, a group of boys would have to be designated as participants in the study and then followed to adulthood. They would also have to be separated into groups as being at risk of meatal stenosis via observed symptoms but not actually having meatal stenosis and those in another group who both have the symptoms and the stenosis. Those would need to be further divided into groups requiring surgical intervention and those whose condition is not severe enough to require intervention.

I suspect that with such a survey and accurate diagnosis, Dr. Fleiss' observations would be very close at 60%.



Frank


Frank

[Bm31]

Originally Posted by Frankly Speaking

Microsoap, and Bm31, I have a question: Sometimes an indicator that meatal stenosis is going to happen is a frenular area that is very susceptible to irritation and infection in children. Mothers describe it as prone to redness and irritation and sometimes weepiness that they often blame on wet diapers but also on swimming pool chemicals, bubble bath and other suspected irritants. Indeed, during the first half of the 20th century, doctors put the blame on mothers for not changing their babe's diapers quickly enough but it is now known that has little or nothing to do with it. It does appear that the condition improves with age but that may not be so simply because I don't think there has been any research on the issue. Have either of you noticed any tendency toward irritation of the frenular area as adults? Anyone who is intimately familiar with a man who had meatal stenosis can jump in here as well!

I don't remember anything specific to that area when I was a kid. Then again, my whole penis was a mess with the constant breaking and rehealing of the adhesions. The stenosis occured very shortly after the re-circ at six, so diapers didn't have anything to do with it. Other than the top of my scrotum ending up where my frenulum should've been, I don't remember anything specifically problematic about that area. My meatus basically just closed up to a pin-hole size.

As an adult, I did have a couple of occasions where I got a split (like a paper cut) right where the glans meets the frenular area about 5-6 years ago. In the last year I've had a couple of ...not sure how to describe.....hard, dry, dead skin type "nub" things develop in that area. I have no idea why or whether either of these occurrences contributed to the return of the "mild" meatal stenosis. The biggest thing I've notice in the last few years is that even though my frenulum was completely scalped it was the one spot I actually had some sensation in. But now, it's totally dead like the rest of it.

[phatchristy]

Does anyone have any pictures of what a normal urethral opening is on a normal intact adult?

It sounds like someone I know has a DH who may have meatal stenosis and asked me what was normal. And, I don't even know because DH is circumcised.

I have to say that I've heard the meatotomy (sp?) having to be done for a few boys in a playgroup I used to attend. No big surprise none of the mom's seemed to know that it was a result of their son's circ. Sounds like some urologists don't want to say anything to impede their future business.

[momto4kids]

Originally Posted by Frankly Speaking

I'll agree with the others here. It is meatal stenosis and it will not self resolve. It must be addressed.

This happens with between 9% and 31% of circumcised boys but is virtually unknown in intact boys. The danger is that it can become so severe that it blocks the flow of urine sufficiently to cause bladder damage or to back the urine up into the kidneys causing kidney damage. As you have seen, it can also be painful to the child.

It is essential that you demand anesthesia for the procedure. Many doctors perform the procedure with no pain management at all. This is nothing less than genital torture for the child. Make sure you are in the room to watch the anesthesia being administered and be sure sufficient time is given for it to take effect, 15 to 20 minutes.

There is a possibility of recurrence in the future and there is a possibility that the underside of the glans will be susceptible to irritation and infections throughout childhood. This is due to the termination of blood flow to the area as a result of the circumcision terminating the artery that feeds oxygen laden blood to the area.



Frank

Thank you Frank ~ the Dr. we saw said that we had 2 options.....

1. in office w/ the topical (which would be in place for 1 hour before beginning procedure) and another drug to make him groggy (and "forget" what was being done)

2. in the hospital under general

we are looking at option 1 since I am leary of how he will react to the IV and medication (I have a very sick reaction to it)

Also ~ I was planning by all means to at least have my DH present in the room regardless of what the Dr says.

Dana

[momto4kids]

Originally Posted by fruitful womb

My ds had meatal stenosis and what you're describing is A LOT like what he went through.


Ds had a procedure with topical anesthetics, emla. It didn't do a damn thing as far as pain relief. He freaked out, even ran to me crying, "Mama that completely freaked me out." He was 4 when this happened.

Its returning, but not to the point of needing more surgery. I hate the thought that maybe it'll get worse and he'll HAVE to have surgery again. I HATE that doctors don't tell you this is a complication when "selling" circumcision.

Its IMPERATIVE that you let the doctor who circumcised your ds KNOW what he/she did to your ds.

After he has surgery, my advice to you is to purchase whats called second skin from spenco. Make sure he heals. The opening absolutely NEEDS to be protected while healing!!! Otherwise, it'll just close back up again.

I didn't use this on my ds and wish I had. I found it long after his surgery. In fact, I was going to post a thread asking advice about putting it on him now (he is 7yrs old too) as a protective barrier. This is something that a foreskin is designed to do in the first place. I don't want to hijack your thread, honest and I'm really shy about posting threads but I'm going to anyways. right now...

I know what you're going through. Its awful. I do know it will help if you make it known how wrong this is to the doctor who perpetuated this problem in the first place.

Thank you so much for your post! It's good to know that I am not the only mom out there. Do you remember how long they left the EMLA in place before beginning? The Dr said it would be on for 1 hour before he began the procedure. (This will be done at Children's Hospital of WI)

AS for letter writing....any ideas on what to all include in it?

Another question ~ if 1 DS has this, what are the odds that my older DS would? The same OB performed both circ's.

Dana

[fruitful womb]

Originally Posted by momto4kids

Thank you so much for your post! It's good to know that I am not the only mom out there. Do you remember how long they left the EMLA in place before beginning? The Dr said it would be on for 1 hour before he began the procedure. (This will be done at Children's Hospital of WI)

AS for letter writing....any ideas on what to all include in it?

Another question ~ if 1 DS has this, what are the odds that my older DS would? The same OB performed both circ's.

Dana

It definitely wasn't an hour. It was more like 20 minutes and he felt everything.

I'm not sure about ds2 but theres always that chance with any circumcision.
I'm furious at your OB right now.

OBs in TX do not do them. That I know of anyways.

[kittywitty]

Originally Posted by momto4kids

How old is your DS? My worry is that he will have rescarring and have to go through this again.

Dana

He was 4 almost 5 when he had surgery. He is now 6 and still has bedwetting issues and a strange spray. He gets irritated a lot, too. They said he may need a repeat surgery someday. I really hate myself.

[Frankly Speaking]

Originally Posted by momto4kids

Another question ~ if 1 DS has this, what are the odds that my older DS would? The same OB performed both circ's.

I don't think there is a heredity component in meatal stenosis. Little is known about it other than it is caused by reduced blood flow to the area. A particular doctor may cause more incidences than another doctor because of the way he/she performs the procedure or the differences between the types of impliments used for circumcision may cause more meatal stenosis with one type more than the other but again, this is not known. More research needs to be done to quantify it and to more accurately identify the eitology. Possibly, with more understanding, more boys could be free of this problem.


Frank