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HELP corrective surgery scheduled 9-30

post #1 of 12
Thread Starter 
Hi, I was directed here by a woman from another board I participate in. I was talking about the problems my son is having at 3 years old from his circumsision. I was hoping someone could help me decide whether surgery is really needed for him.

I'll start at the begining, my son's circumsision, we feel, was somewhat botched to begin with. He had/has a lot of foreskin still. It didn't look anything like our oldest son's. Anyway, we had problems with it fusing to the head of his penis. Our old doctor told us he was fine and it wouldn't be a problem. Well a year later, his foreskin is fused all around the top of his glans, the very top is still open, but he has started getting these white pustules on the bottom side of his head. Our new pediatrician told us it was smegma built up underneath where it has fused. It is very sore for him. To wipe him up or bath him and wash there hurts him. Our doctor scheduled him to see a urology specialist and told us he will probably need out-patient surgery that day to release the foreskin and get the stuff out. She said normally she would do it in the office and just pull back the foreskin (yanking it back--sounded very painful to me), but that she couldn't do that with his because of how much is fused.

I am SO sorry we ever had them circumsized, we mostly did it because my dad was not cir'd when he was young and chose to do it as an adult, and he made it clear to us that we should do it while they are young and wont remember etc. Everyone I know is Cir'd including my husband, brother, etc... I didn't think anything of it. I wish I had done more research on the subject before we ever decided. I can't take those decisions back now, but I need to know if something else can be done for my youngest boy now.

I hate to see him in pain, and really would hate to see him go through another unnecessary surgery. If anyone here can help, I would appreciate it. Thanks.

Christine
my e-mail: cbutler75@adelphia.net
post #2 of 12
I know the experts will come along and correct me if I'm wrong...but it's my understanding that the adhesion of your son's remaining foreskin to his glans is his body's attempt to repair the wound and re-normalize itself. If he were intact, his foreskin would be adhered to the glans like the fingernail is to the finger for most of toddlerhood if not beyond.

Except for the everyday pain issue, I would say that it would do more harm than good to forcefully retract your son's remaining foreskin. I wonder whether the pain, though, is actually from any smegma buildup as opposed to just the pain of adhesions that may be pulling as they separate naturally (given that he's 3, that would not be unexpected - often intact little boys get pain and irritation when their foreskins start to release, as they may release unevenly and pull differentially).

The problem with yanking it back, whether with pain relief or not, is that the tearing could cause injury that would cause scar tissue to form, leading to more adhesions down the road that are unnatural as opposed to natural. Also, smegma is not in and of itself a concern - it's not infectious nor does it promote infections. (The word "smegma" comes from the Greek word for "soap" - it is a natural, cleansing substance just like the substances your vagina secretes to clean itself out.)

What I would recommend (in my non-expert opinion) is finding a foreskin-friendly doctor to consult with, one who doesn't believe that the answer to every foreskin problem is to a) cut it off or b) yank it back, thereby causing more problems than are solved.

I think your son will be grateful to have as much remaining foreskin as possible when he grows up, so I would be extremely conservative now in treating what may be a non-problem.

Apart from the experts like Frank whom undoubtedly will post to add information and correct me if I've screwed up, you might also want to contact Marilyn Milos, the nurse who runs www.nocirc.org. She is a great source of information.

Best of luck!
post #3 of 12
Christine:

I'm going to give you a very longwinded explanation because you need to understand all aspects of this to come to the best decision for your son.

As recently as the early 1990's, the prevailing medical practice was to cut as much of the skin from the penis as necessary to have the skin tightly stretched on erection. However, this was causing many problems from buried penis syndrome to hair on the penile shaft and even skin so tight in adult men that it would tear during sex. A large percentage of circumcised men have circumcisions so tight that their penis can not reach full erection. After more than a hundred years of this, the medical profession finally recognized the problem and instead of just ending circumcision, they decided to start doing loose circumcisions. That is, leaving much more skin for the child to "grow into."

Well, that has it's own problems as well as you can clearly see. We have many mothers come here with the same problem as you and still, even with all of these problems, the doctors continue to circumcise. A big part of the problem is that about 80% of circumcisions are done by OB/GYNs who will never see the child again or hear about the problems. that's probably the reason that pediatricians are far less likely to recommend neonatal circumcisions. They get to see all of the problems.

In an intact child, the foreskin is bonded to the head of the penis just like the fingernails are bonded to the nailbeds. Over time, this bond breaks down and the foreskin releases to become retractile. There is a very wide range of ages that this happens ranging from toddler to teen.

During the circumcision procedure, this bond is separated. The normal response of the body is to try just as hard as it possibly can to put itself back to as close to normal as it can. This includes rebuilding the bond between the foreskin and glans. This is what is happening to your son. With it being put back to as close to normal as possible, it will then go on to behave much like normal. That includes releasing the bond when it normally would.

My recommendation and the recommendation of the AAP and AMA is to do nothing. Let that normal bonding and subsequent separation take place on it's own. That also includes caring for your son's penis by doing nothing. Don't try to retract the foreskin and don't try to clean inside it. When it does normally separate, it will look like what is viewed as a normal circumcised penis. The alternative is to have the adhesions lysed surgically and then you will have to maintain the separation by daily retraction and application of a barrier ointment such as Vaseline to prevent the reattachment of the foreskin to the glans. This will be very painful to your son both immediately after the surgery and possibly for the entire time that this is necessary as his glans and inner foreskin is extremely tender and sensitive. I know one mother who decided to do this and she is still applying Vaseline a couple of times daily and her son is 7 years old. If she misses a day, the adhesions start forming again. I can only imagine what this regimine is doing to her son psychologically. It ain't natural for a mother to be doing that at that age!

The only caveat here is that if the scar line from the circumcision is adhered, they should be lysed. (surgically separated) Scar adhesions will not release on their own and can cause skin bridges. This is usually not the case.

The white spots you are seeing are not pistules. They are called "pearly penile papules" and are quite common and absolutely benign. Nothing needs to be done about them and trying to do anything is not likely to achieve any benefit.

My recommendation is to cancel the appointment for now. There is no immediacy to have this done. Research all about this and educate yourself until you are confident you clearly understand all aspects of this condition and can make an educated and informed decision. Once you are an educated medical consumer, you can make a truly informed decision about how to proceed in the best interest of your son and at that point, you can elect to go ahead with the surgery or to wait for normal release of the adhesions.

If you have any other questions or need links to mdical research, just ask us and we'll be happy to provide it. A good place to start your research is at the www.cirp.org medical library. Just type any word or phrase you don't understand into the search block and you will get medical research articles and reprints of articles from medical publications around the world.



Frank
post #4 of 12
Quote:
Originally Posted by Quirky
Apart from the experts like Frank whom undoubtedly will post to add information and correct me if I've screwed up, you might also want to contact Marilyn Milos, the nurse who runs www.nocirc.org. She is a great source of information.
We were posting at the same time and I didn't see a single screw up. Your information is right on target! Are you trying to replace me? :LOL Just kidding!




Frank
post #5 of 12
Christine- Sorry to hear that you guys are having problems.

This whole pistule/ pearly papule thing... could we get some clarification about what you are talking about? I don't think what you said:

Quote:
Well a year later, his foreskin is fused all around the top of his glans, the very top is still open, but he has started getting these white pustules on the bottom side of his head. Our new pediatrician told us it was smegma built up underneath where it has fused.
was a sufficient description for Frank to say:

Quote:
The white spots you are seeing are not pistules. They are called "pearly penile papules" and are quite common and absolutely benign.
Are you talking about white lumps UNDER the skin where the adhesion is? Or maybe pockets inside scar tissue? (I remember I had a wierd white head thing inside my c section scar) Could these be pearls of smegma?

Here is a picture of the normal anatomy Frank mentioned- just to clarify.

http://www.circumstitions.com/Images...ry/papilla.jpg

Here is a picture of a smegma pearl:
http://dermatlas.med.jhmi.edu/derm/I...eID=-234504218


There are picture on Jenny's website of post-circumcision adhesions and post adhesion surgery- they are kind of upsetting to look at- just warning you. One of the pictures shows the acumulation of smegma which was trapped inside the pocket of adhesion. http://www.circumcisionquotes.com/complications.html

I think that before I would go for surgery, I would try a steroid ointment to see if that will get the adhesions to release before you go a more invasive route. Has that been offered? Would one of the doctors be willing to try that before the lysing?

If you do the lysing- that should go with lots of pain relief and emotional support.

I think wait and see is fine- if a child is not having any problems from the adhesions ... but if he is in pain, as you say he is... surely that is something that can not be ignored!! He needs some relief. What is happening to him is not normal. He should not have to live with daily pain in such a sensitive place.

I do not like surgery, I am always going to want to see people exhaust the conservative routes before surgery happens. I know of a man who had surgery for adhesions... (actually he was circumcised as a child because he had adhesions with his foreskin- he resents this) and he says that to this day he had a lot of pain in the zone where the adhesions were attached- there is a pit there. Imagine steaming the seal of an envelope before trying to open it- the time spent in softening that seal will prevent any tearing. The cream might help to allow the seperation to occur in a more perfect manner without risking tearing the surface below it.


Love Sarah
post #6 of 12
Thread Starter 
Quote:
Originally Posted by Sarah
Christine- Sorry to hear that you guys are having problems.

This whole pistule/ pearly papule thing... could we get some clarification about what you are talking about? I don't think what you said:

First I would like to thank you guys for your responses and the links. I will be sitting down with my husband tonight to discuss everything, and being able to show him things will help. It will also help us formulate some questions for the doctor.

At the underside, base of my son's penis head he has a nodule, cyst, something filled with white stuff. The pediatrician told us it was smegma built up there and she said that in itself would not hurt/bother him, but the whole reason we took him in was because it does hurt him. It might not be that in itself, but it seems to be an area of serious tenderness for him. We initially took him to the doctor on the 1st of the month when we noticed the white ball of smegma (or whatever it would be called properly) and the doctor told us it wouldnt be a problem to wait a month for the appointment to see the specialist. Though she didn't tell my husband anything we could do for him in the mean time or for the pain/tenderness. Unfortunately I wasnt able to go to the appointment and my Hubby doesnt always think of things like that.

My son has a high threashold for pain, he gets his shots (the ones that burn) and all he does is says "ouch" and thats it, its over. With this, every time I wipe him (still not potty trained yet) he tells me ouch and his eyes tear up and he tries to pull away. Same when we try to bath him. It's not something that is an emergency, but I don't want my little guy to be in pain day in and day out when his pull up rubs him wrong, or when we wipe him and whatnot.

I am going to check out the links you guys posted and hopefully get enough information so we don't go in blindly and I can ask informed questions without being blown off easily. I feel like both of the pediatricians we have had have just blown off all our concerns about his circumsision from the begining. And I will be having a chat with my OB/GYN when I go back in for my next check-up about all this, since he is the one that did the procedure on my boys.

Thanks again,

Christine
post #7 of 12
Christine- I'm glad you are getting help here. One thing I want to caution you about is when you see the doctor, be sure to make it clear that you do not give permission for him to rip apart the adhesions. This would be very painful and possibly damaging to your son. Doctors often take it upon themselves to just tear them apart, without asking the parents, and without pain meds. This should be said before your son's pants are off. Also, be by your son's side, as it can and often does happenvery quickly that docotrs ignore parent's requests regarding forcible retraction.

See the sticky at the top of this page "Warning for moms of Intact sons" Even though your son is circ'd, it still applies to you.

Hope your appt. goes well.
post #8 of 12
Christine- how did your son's appt go today? Please let us know what the doctors said about your son.
post #9 of 12
Thread Starter 
First of all thank you to everyone here who helped give me a little education. Wish I had found you all a few years ago!

Secondly, my son's appointment went wonderfully. To my surprise the urologist that we saw was not one of those gung ho happy to slice and dice doctors I am so affraid of. She explained how everything works (which I had read up on myself thanks to the links here) and told me she didn't feel like he needed surgery and did not know why my regular pediatrician refered us to her at all. She basically told me about the steroid cream to use if he is in any pain, which the past two days the redness/soreness had cleared up for the most part--go figure just before he sees the doctor-lol. Anyway, she told us how to take care of it and suggested not trying to pull the skin back anymore and just let it go natural and see how things progress. She explained, just as some of you had, that it would release on its own later on. She said by 10 she really doesnt see that many boys that still have adhesions, usually it has released by then on its own.

She also said she could do the surgery, but it would only be cosmetic, and most likely end up adhering again afterward and if something else went wrong later he then would not have enough skin left to repeat it another time if it were necessary. This is the point where I said NO I didnt want to have to do the surgery anyway, unless it was a LAST option and had to be done because of health risks.

Anyway, she was an excellent doctor. I am so glad. I went in there prepared to battle it out with a slice and dicer. I was so relieved when she seemed to be more of a naturalist, and not so worried about padding her bank account with unnecessary procedures. YAY for this doctor!!! We went to Children's Hospital of the Kings Daughters in Chesapeake, VA btw.

Anyway, thanks again for pointing me in the right direction.

Christine
post #10 of 12
Oh, Christine! That's just fantastic! I'm so glad to hear everything went so well for you and your son! Also glad to hear that you found a Urologist who is competent and educated. This could have been such a disaster and it turned out so great!

If you would, I would like to know the name and location of this doctor for future reference if you don't mind. It seems she has both the right attitude and correct information. You can post it here or send it to me in a PM if you don't mind.





Frank
post #11 of 12
Thread Starter 
I would gladly give that information out, especially if it would help other parents in this area who need to see someone they can trust.

Children's Hospital of the Kings Daughters in Chesapeake, VA

Jean Hollowell, MD -Urology

CHKD Urology, Hampton Roads, Virginia

Christine
post #12 of 12
Yeah Christine! Such good news. We all needed that, to hear that there are SOME educated doctors out there. You must be thrilled.
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