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BXO/male lichen sclerosis in 15 year old son - help needed, please

16 replies

CurlyhairedAssassin · 17/09/2021 15:38

DS (15) has had some urinary issues for a long while but I think has been hiding the extent of it from us due to the fear/embarrassment of being examined or whatever. He's had a few UTIs over the past 18 months-2 years but unfortunately due to the lockdowns he wasn't physically examined down there by anyone (and wouldn't let me look either, or just see how his urine flow was) - we had brief telephone consultations with the GP then told to drop urine samples in and prescribed antibiotics which seems to clear up any actual infection (he finished 3 days of antibiotics last weekend) but it's gradually taken him longer and longer to have a wee, and I think he's been hiding how bad it's got, or maybe just got used to it being "normal" for him. I guess we knew something must be up when he took longer and longer int he bathroom than normal but assumed it was to do with his UTIs, or even just on his phone!

However, earlier this week, he couldn't pass urine at all and was very upset, so we had an emergency dash to A&E which was horribly traumatic for him as his foreskin was so tight and the urethra so narrowed that they could not insert a catheter at all (despite trying various sizes, having the main urology consultant called out, and gas and air etc). It was horrific really, I wouldn't wish that on anybody. He was in lots of pain both from the urinary retention in his bladder, plus the end where they were trying to widen things to get a catheter in (bleeding at the opening etc Sad). After him screaming out with pain and crying they decided it was too traumatic for him to continue and he would have to have an emergency procedure to widen his urethra etc, under general anaesthetic so that they could get a catheter in and get his bladder emptied. It was the middle of the night by this time and I think they had to call the surgical team out, it wasn't ideal all round. Horribly stressful and worrying.

Anyway.....they finally managed to empty his bladder and ultrasound and blood tests don't show any damage to his kidneys (which is a major relief). He stayed in hospital another night as they said he has something called BXO, a chronic skin condition/disease which causes scarring of the foreskin and can go up the urethral tube, which is what has happened with him. He needs an operation to fix it, and has been released home with a catheter until Monday when he returns for his op.

We have 2 choices: a full circumcision or a preputioplasty (which basically retains the foreskin but cuts are made to widen/loosen it). There are pluses and minuses with both. There is a 20% chance that if he opts for the preputioplasty that it might not fix the issue and he might need to have a circumcision later anyway. But obviously circumcision takes longer to recover from and there may be sensitive issues, possibly long term.

He is a very young 15, emotionally, and started developing later than his friends. He is just not at the point at even thinking about a sex life and how this choice might impact on it. Since the emergency procedure we've had a frank discussion about erectile function etc, and it seems he doesn't even masturbate as "can't see the point." Grin It's possibly because the tight foreskin issue means it's not pleasant for him to touch down there like that, I suppose.

Anyway, I guess I'm asking for advice from anyone who has had to help their son make the decision over which procedure to have. I feel like it's a big responsibility because if we opt for the circumcision, once it's gone, it's gone and what if he later regrets it? If we opt for the preputioplasty will he hate us if the BXO recurs and he has to go in for further surgery, and a circumcision anyway?

Its so hard to know what to do. Plus the terrible guilt I feel at not realising how bad things had got. He was very private before, about his privates, and just did not want to dicuss it at all, and as I said, the lockdowns and lack of face to face consultations have just made things develop so that it's got more difficult to sort out.

Apart from seeing if anyone else's son has had this problem, I'm also posting to urge anyone with sons who you have even a slight concern about, regarding foreskin or weeing issues, to get them checked out physically. If they're at an age where they are embarrassed and you think they are minimising the extent of the problem just tell them my son's story and hopefully that would have them ruuning to the GP to get looked at!

OP posts:
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Goingoutout123 · 17/09/2021 15:51

DS had BXO. Only affecting foreskin at the time. Doc advised circumcision before it spread to urethra. He was 8. Took a week off school and was quite sore (and super sensitive) for a bit. He was an absolute trooper about it. I don’t know if it would be more traumatic for a 15 year old who is more developed? Don’t beat yourself up about not realising. We only knew as one day DS had a spot of blood (where scarring must have torn) and we investigated. But at age 8 he was weeing with the door open and sharing everything! 15 year old boys don’t share. I hope everything works itself out. If he could have the operation before a school holiday it might help with a more private recovery?

VitalsStable · 17/09/2021 16:13

Hi Curlyhairedassasin my DH went through something similar at 18 years of age. We had DS circumcised at a young age due to the same thing that DH had.

He's collecting our son from school at the moment but when he's back in a couple of hours I can ask him to give you advice from his personal experience if you'd like?

CurlyhairedAssassin · 17/09/2021 16:14

Thanks, Goingoutout.

This op can't wait due to it having got so bad. Sad So no chance of waiting until school holidays unfortunatley. Obviously they can't risk an episode of acute urinary retention again as it's a medical emergency. They already had to widen his urethra during the emergency op the other day so obviously the tissue there must be affected by the BXO too, I giuess. They are going to check that part with a camera when he's under the anaesthetic next week. I'm assuming that if there is any risk of reoccurence when they look that the preputioplasty would be the less safe option, and the full circumcision would be better.

God it's a worry. It's great that they sorted your son out when he was young enough not to be embarrassed. I asked my son last year if I could just check it out and see how the wee comes out and he called me a wierdo and made me feel like one for even asking!

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SparklingLime · 17/09/2021 17:16

What a nightmare for your poor son and you, OP. I hope advice is along soon. Flowers

CurlyhairedAssassin · 17/09/2021 17:29

@VitalsStable

sorry, must have missed your post. Yes, if you don't mind asking your husband then advice from a man who went through it at 18 would be really helpful, thankyou (if he doesn't mind!). I think it comforts DS to think he is not the only one who's had to go through this.

I guess I'm worried about loss of sensitivity long term if he has a full circumicision (as well as the painful recovery). Imagine if he tells me later in life that I've ruined his sex life forever! Shock

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VictoriaBun · 17/09/2021 17:43

That sounds like a very painful experience for your son. We have no experience of it , but if you haven't looked already , I copied a small portion of info from Wikipedia . As it's for medical reasons , he shouldn't feel worried about having a circumcision . My dh had one for another medical reason as a young boy , and he doesn't have any problem with having sex . Also as your son has yet to have a sex life ' it would be his normal '

Taken from Wikipedia :
The prevalence of circumcision is the percentage of males in a given population who have been circumcised. The rates vary widely by country, from virtually 0% in Honduras and Japan, to 6.6% in Spain, to 20.7% in the United Kingdom,[1] to 45% in South Africa, to 75% in the United States,[2][3][4] to over 90% in Israel and many Muslim-majority countries.[2][5][6] In 2010, the World Health Organization (WHO) estimated 30% of adult males worldwide (aged 15+) are circumcised, with about two-thirds of those being Muslims.

VitalsStable · 17/09/2021 19:46

OK, husband of VitalsStable here. I had 'emergency' circumcision when I was 18 after my foreskin tore during my first ever penetrative intercourse. It was a pretty horrendous experience and one which I have let affect me for my entire adult life. It needn't have. It's only now 30 yrs later I am properly dealing with this. A circumcision is incredibly normal and very common (think about it, all Jewish, Muslim boys and a very large percentage of American boys have this done). My biggest mistake was not addressing the psychological issues there and then. Talk to your son, this would be an operation that will dramatically improve his health and when it gets to the right time his sex life. What you definitely do not want to happen is what I went through, so I'd say get this done as a necessary routine operation - not an emergency as that will only make the recovery more difficult. Please talk to your son, make him feel that it is a simple and very common procedure (because it is!). He will be like millions of other healthy young men. Yes recovery might mean an uncomfortable couple of weeks where you might doubt the decision you all made to get this done, but within a few weeks I guarantee the benefits will be obvious. Please make sure you talk to your son, I was not able to do this with my parents as sex was never ever discussed in our household. You will be closer to your son for it and talking now will aid the physical and mental recovery. I know this to be true as our son had the snip when he was 4 (this was medically necessary as well) and there are no regrets. He is now an adult and has not had any issues since.

CurlyhairedAssassin · 17/09/2021 22:59

@VictoriaBun: You're actually right, this would be his normal, wouldn't it, when he starts his sex life? I hadn't thought of it that way before, so thankyou.

@VitalsStable: Thanks to your husband. That is so helpful and thankyou to him for being so open about his experience. I hadn't actually considered the psychological aspect of starting off your sex life with such difficulties straight away. That must have been a shocking experience, made 10 times worse at it was when trying to lose your virginity when people are at their most nervous and vulnerable anyway and it's a big deal.

Luckily, I don't get embarrassed at all at discussing anything to do with sex or body parts and after my son's dash to A&E earlier this week, he now sees that it's just another body part and function so has been discussing things more openly than he was before. DH is a different matter, he was brought up in quite a traditional Catholic household where you just didn't discuss details of stuff like that with your parents.

I guess we will probably go with what the consultant advises for his particular case rather than having any strong feelings either way then, about appearance or whatever. It may be that in my son's case a circumcision would be the safest and best option rather than just the loosening procedure which may end up needing a full circumcision at a later date anyway. He has been doing his own research and is aware that circumcision will be sore afterwards for a couple of weeks. I have just read out your husband's experience to him and I think it is helping him process all the info and how this happening now could well avoid any major issues when he is a sexual adult. The worst thing for him is fear of the unknown - he's happiest when he's armed with all the information so he can prepare himself, even if some of the details are a bit unpleasant. Thankyou again.

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Dunrovi · 17/09/2021 23:11

You sound like you're doing a cracking job of supporting your DS through a very difficult episode OP.
I have no experience of this whatsoever but I think I'd be veering towards a full circumcision as it sounds like that's your best chance of dealing with this in one go.
Also it would be nothing remarkable for future partners, where as an irregularly cut foreskin might need to be explained. Millions of men all over the world are circumcised, most women will have come across one before, or at least seen pictures!

VictoriaBun · 19/09/2021 18:01

Good luck to your son for his op.

MrsFin · 19/09/2021 18:07

DH had a circumcision at a young age too. I'm not sure why and he's not here to ask.
No sex life related complaints from either him or me Smile

CurlyhairedAssassin · 19/09/2021 19:38

Thankyou. I'm trying to put a brave face on for his sake, but I've been googling (I know, I know), and the idea of a recurrence and lifelong issues from the condition itself (not the circumcision) is really giving me anxiety.

I'll update tomorrow.

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SparklingLime · 20/09/2021 23:04

Hope today went well, OP.

CurlyhairedAssassin · 21/09/2021 11:50

It all went well. He had the full circumcision. I just hope we (he) made the right call between the 1 options. They said there were no apparent issues with the urethra higher up which is good. He’s done a couple of normal wees since and marvelled at how quick it came out compared to before. One thing they noted is that his wee hole is slightly off centre (hypospadias I think is the medical term) but this shouldn’t cause him any issues. Perhaps the fact that he opted for the circumcision is better in that case, I’m not sure.

He is obviously still sore and worried about putting the antibiotic ointment on, but he slept all night so the pain must have been well-managed.

He goes for follow up with the urologist in 8 weeks, which is when we’ll get a histology report about the BXO.

It’s a relief that that part is over and done with. Just hoping for no further complications or regrets.

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VictoriaBun · 21/09/2021 13:27

At least he is the other side of having it done !
Wishing him a good recovery.
" Can you get me a sandwich Mum "
" Can you get me some crisps Mum "
" Mum can you get ........ "
It's going to be a long 8 weeks ! 😂😂

CurlyhairedAssassin · 21/09/2021 17:08

Oh yeah, he'll milk it for sure! Grin

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