Tuesday, January 14, 2014

Saving My Son from Unnecessary Circumcision

When my second son Andrew was approximately 12 months old, he had a urinary tract infection so bad his urine became sort of like sludge. It would ooze out when he urinated, and appeared gritty. Our family doctor cleared it up with antibiotics, but after that his urine started becoming trapped inside of his foreskin after he urinated, the opening of the foreskin would be squeezed shut, and only a drop or two would exit. I don't know if this was related to the UTI in some way, but the trapped urine happened after the UTI. I worried because the entire contents of his bladder would be inside the foreskin, and I thought maybe the urine would be forced back up the urethra, perhaps causing damage or more UTIs. The amount of urine would cause his foreskin to swell to the size of half a lemon (which is pretty big on a tiny little boy). THAT is what I considered outside of normal ballooning. My now 5 year old;s foreskin also balloons when he urinates, but no where near as much as that. I spent a lot of time on the internet searching for things like "trapped urine," "foreskin ballooning," and "small foreskin opening," but really wasn't able to find a lot of information outside of the diagnosis of phimosis. At such a young age, real phimosis is almost unheard of, though many USA doctors misdiagnose it in children because they are not educated in normal intact anatomy. Everything I read made it sound like what Andrew was experiencing was way outside of what was normal and my concerns grew.

By the time Andrew turned two, our family doc though perhaps someone should take a look. She didn't know what to do. She is intact-friendly, but doesn't see many foreskins. She referred us to MSU Pediatric Urology where we saw Dr. Bartkowski. The first recommendation from him was to circumcise. I told him I wanted to avoid that, and that we should try anything else first. He thought about it for a while and decided on a course of steroid cream, hoping to widen the hole. We used that for 3 weeks. The extreme ballooning was still happening, so we had to schedule a follow up appointment with Dr. Bartkowski. He very reluctantly said to try for 3 more weeks, but no longer as it would make Andrew's foreskin grow too big and then we would have to circumcise for that reason too. If the second course of cream didn't fix the problem, then we would have to circumcise. We used the cream for 3 more weeks and still had the issue, so I just did not call or go back to Dr. Bartkowski.

We started seeing the issue less and less, but Andrew became interested in potty training and it was causing a problem because he would be frustrated that nothing was coming out, so I started searching for another doctor. There were several local intact-friendly pediatricians, but none of them would take us on a consult, and we did not wish to switch providers permanently. I had heard that UofM Pediatric Urology was good but they wouldn't take our insurance. Several months of calling around yielded nothing but frustration on my part. Why is it so HARD to find a knowledgeable doctor? Then I heard about Dr. Van Howe, and that he was moving to Saginaw from Michigan's Upper Penninsula. This placed him within a 2 hour drive for me instead of 8 or more hours. When I called in his new office in August, his practice wasn't set up yet and they thought he might start taking patients in September but the staff did not have a lot of information. I called again in September and his staff confirmed that they would take our insurance but they were not sure if they could take us as a consult. I had to call several more times and explain our full situation each time before I finally got an answer. I finally convinced them in the beginning of January and got our referral straightened out with our local family doctor. Amazingly, none of his staff that I talked to knew that Dr. Van Howe was such a big name in genital integrity and that he would know so much about foreskins, but that was our golden ticket and I was determined to see him.

We saw Dr. Van Howe on January 10th and he was so kind and patient. I explained Andrew's whole history and my concerns. He said that even the extreme amount of ballooning is normal- in fact, it was good because it showed that everything is still nice and elastic as it should be. In some very rare cases, the skin becomes hardened, like a callous, and is unable to expand. He did an exam and said the opening is a good size, but that we could try to encourage it to open up a little more with another course of steroid cream, but this time for 6-8 weeks straight. He was confident that the cream would resolve the issue, if time alone did not. If the cream did not work and we were still concerned, we could attempt surgical correction in a procedure that makes 3 very small incisions, like pie wedges, then sort of rotates the cuts to make one bigger hole. It's a common surgery in Europe, but only about 6 doctors in the USA know how to do it. It would have to be done by a pediatric urologist who can do plastic surgery, and the closest one is in Boston (that he knows of). However, he did think that Andrew's situation is totally normal, and having the surgery would be extreme. So, my nerves are at rest, Andrew is mostly normal, and I think the cream will do it's work and I'm a happy mother.

These are some links to websites and Facebook groups that helped me along the way:

Saving MY Son,

1 comment:

  1. Hi Natalie,
    I realize I am a few years late to the party on this one, but I am hoping you may be able to help. My son is 32 months old. 5 days ago he began urinating and started screaming. We have been to 2 emergency departments. 1 dr forcefully retracted him. Despite me telling him not to and to stop. The second was very kind but had no more answers than the first. I was told his foreskin opening was too small and he too has quite extreme ballooning. While I am glad to know it is normal to see ballooning that is that intense, as your sons'...I am hoping to find answers for why he has such intense pain. They first thought balanitis. But he had no discharge. Then UTI. But the antibiotics gave him hives and then no signs of infection were ever found in his urine. So now they are saying its non-specific urethritis. But there are no real answers for helping his pain. The only way he can pee is in a tub of warm water. Just his feet. Because it forces him to go. He holds his urine all night long now. I dread the click going off every 2-3 hours during our days becuase I have to make him pee so he doesn't get a UTI on top of this. The Motrin doesn't touch the pain, cant use tylenol. Azo was no good. He has broken blood vessels in his eyes and face from screaming so hard. His little body shakes and is covered in sweat. I'm aearching for an intact friendly pediatric urologist but I only have 2 in my state. Its brutal watching him hurt like this.
    Did your son have any pain with his issue?
    How is he now?
    Did the steroid cream work? What kind did they give you?
    Any help or advice is welcome!


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