Are there any Anti-Circ groups out there besides NOCIRC?

[falcon]

There are no NOCIRC groups in the Syracuse area, I was hoping maybe there is something else... I think I'd feel better having a flesh-and-blood support system when doctors tell me things that I've read are wrong (long story short... a pediatric urologist recently told us that we should retract our son's foreskin to rid him of a smegma pearl, which I knew was wrong, so I didn't do it of course... but I know I'd feel more confident going against a specialist if I knew others going through the same thing...) Thanks for any help

[Sarah]

Flalcon- There are many other groups, but none as strong for parents as NOCIRC... others are specialty groups like Doctors opposing circumcision and Attorneys for the rights of the child...

A NOCIRC office in your city may not mean any more than a intactivist with an e-mail address. They probably don't have a support group or a list of parents or professionals who can help you...they may never have even had a child! It's not like LLL- there are no meetings or anything. In fact, if you put your mind to it- you could become NOCIRC Syracuse! I think that NOCIRC folks would be happy to give you support or opinions, but they are not in a position to see your child or resolve his problem. They can't go head to head witrh a urologist for you... you are in as good as position as they are to find out the answer to this. If anything they could just point you to medical literature which fills out the picture of what you may have heard.

Do you think mothering moms could help? Has this been going on a long time? Is it really big? Is it causing him pain? I hope not- I hope that wait and see is a reasonable option for you... most of the smegma pearls we have heard about on this board resolve on their only in only a few days. My son never had one, and I have seen photos online- but other than that- I don't have any personal experience to share. Other moms here have been this route- I hope they are reading!

Love Sarah

[falcon]

The pearl he has is fairly big (maybe about the size of 2 or even 3 peas mushed into a lump), and he's had it for a couple months now... our family doctor wasn't sure what it was, so she referred us to the urologist (in case it was a tumor or something). The urologist quickly diagnosed it as a pearl, and said that we should retract him, because it is at the very base of the head of his penis (and if we left it alone he may have trouble retracting naturally when it does eventually happen and then would need to be circumcised).

Since he doesn't seem to be in any pain, and everything I read about care of intact boys says to not retract his foreskin (and that forced retraction can lead to a host of other problems like infections), I felt confused about this advice. So I emailed a nurse at NOCIRC about this situation, and she told me definitely leave it alone. So that is what I did. It won't get infected, since it is in an anaerobic environment, so I think the only thing I have to worry about is if it gets bigger. Still, I feel nervous that we got the wrong info from a specialist, and I wish there was more info out there. Boys should not be circed for pearls according to the NOCIRC site, so why is this specialist suggesting this could happen? You'd think being a urologist, she must have dealt with intact males before, so she should know what she is talking about.

Ok, well, if nothing else I got to vent my worries. If anyone out there is going or went through something similar to this, I would love to hear from you (what you chose to do and how it worked out).

[Frankly Speaking]

Summer:

As wild as it may sound, there are many physicians who have never even seen an intact male and the majority have almost no experience with an intact male. Their typical action is to give an off-the-cuff diagnosis and prescriptive advise without ever doing any research on the condition or remedies. That is what has happened to you.

Marilyn Milos that you contacted at NOCIRC has almost 30 years of nursing experience with a concentration in intact boys. She also has a back-up group of very knowledgable and experienced physicians in intact boys. You could not possibly go to a more knowledgable source of information.




Frank

[laidbackmomto2]

My son had smegma pearls (I think when he was about 2) on either side of base of the glans on the underside of his penis (ok, that was a mouthful). They looked like they were large white peas that had been flattened underneath his foreskin. I really didn't pay them much attention and within a few months, they had disappeared without me even realizing it (ie. nothing "oozed" out, nothing showed up in his diaper). When I did notice that they were gone, I also noticed that my son's foreskin was "looser" than it had been, so I'm pretty sure the pearls had assisted in his foreskin separating from the glans.

If the pearls are not causing any swelling, irritation or pain, I wouldn't worry about them at all. Sounds like your son has moved on to the next stage of penile development

Cindy

Lindsey (96/02/26)
Jason (00/06/08)

[falcon]

Thank you for your responses. I did have the feeling this doctor office I went to had not dealt with many intact boys from a few of the things they did and comments they made (like I had to quickly swipe the nurses hand away when she started tightly pulling at his foreskin "to check for smegma" and when the doctor commented on "the extra skin" he has aka foreskin) But it's just so hard to believe since they are such a busy, busy office (we had to wait in the crowded waiting room for 1.5 hours to see the doctor). And I've never had to deal with such bad advice from a physician before, so it has been bothering me a bit. And of course I want to be 150% sure I am making the right choice for my baby, so I have been asking as many experienced people as I can find about this situation (thank goodness for NOCIRC). The extra reassurance from people I've found online does make me feel less alone in my decisions

I am supposed to take F to a follow-up visit with the urologist in a month or two. But since pearls are normal, I probably will not do so (since if I go, I'll probably just get harassed about not following the drs orders to retract). I don't really want to have to deal with this office ever again. It is times like this, I wish I lived in Europe where intact is the norm. Oh well

[A&A]

Yes, circumcision not only affects those boys who are circumcised, it also affects those of us with intact boys, because we have to deal with the resulting ignorance in doctors. Dr. Fleiss in LA. is an expert pediatrician to whom perhaps you could place a call. (I've never tried calling him, so I don't know how well he returns phone calls.)

[ldsapmom]

Both Marilyn Milos and Dr. Fleiss are not only fountains of knowledge and information, but they are also generous with their time and do, in fact, return phone calls!

I spoke with both (Dr. Fleiss even called my house! I did not have to call him first!) when we went the rounds with my older son who was born with a chordee penis (which eventually did require circumcision to loosen the embryological scar tissue forcing his penis to stay taught and point unnaturally downward). They were both lifesavers, though, and I am so grateful for nocirc.

My second son remains intact -- his penis was fine, but he was born with a heart defect (made us wonder whose getting all the perfect babies out there? LOL). Both are fabulously healthy now, btw.

[falcon]

I thought I should follow up on this, in case anyone else is going through a similar thing... F's pearl completely vanished a couple of weeks ago. (It took almost a full year) He's not retractable, so it must have broken up and washed away. I am *so very* glad that I left it alone, and didn't follow the advice of the urologist we went to. I don't know what we'd do without this board and no circ

[Frankly Speaking]

Thanks for the follow up. I had remembered a post like this one and couldn't remember who it was. Since we hadn't heard anything, I had assumed it had resolved. Thanks for the follow up. I get lots of PMs as well asking for advice on a wide range of penis problems but rarely get an update. I do remember them and do worry about the outcomes. I just wish I had enough room in my PM file to keep all of them for later follow up.




Frank

[Quirky]

want a bigger box?

:LOL Sorry, that sounds rude, doesn't it? Frank, for the low low price of only $15 every six months, you, too, can get a mailbox capacity of 500 PMs!

http://www.mothering.com/discussions/subscriptions.php?

Plus you could put up a cool anti-circ avatar.

[Frankly Speaking]

Actually, it doesn't sound rude to me at all. My generation had a slang that gave that a whole different meaning. To me, it actually sounded quite generous! :LOL




Frank

[hummingbear]

Originally Posted by falcon

Still, I feel nervous that we got the wrong info from a specialist, and I wish there was more info out there. Boys should not be circed for pearls according to the NOCIRC site, so why is this specialist suggesting this could happen? You'd think being a urologist, she must have dealt with intact males before, so she should know what she is talking about.

You would think that a specialist would research all the different options! My nephews urologist recommended circumcision; my sister didn't buy it! He is just fine!