BXO help needed _{Page 2 of 2}

Mr Avar Bracca is based at Russells Hall hospital Dudley West Midlands

I have suffered from BXO for many years and it manifested itself by reduction in the flow of urine flow. Like many, I put it down to ‘small bore’ rather than a medical condition until one Christmas it resulted in a complete blockage.

I was circumcised and had two surgical interventions to open up the pipe work but with limited success. For the last number of years I have been using catheters on a weekly basis just to keep things flowing. I have also been using Dermovate ointment which has proven very helpful.

Two years ago the intervention already described of opening up the penis down to beyond the restriction was proposed. The skin from inside the mouth used as a graft to form a new piece of pipe work, and then some 6 months later, the penis reformed. I was traumatised and could not contemplate the surgery and some two years later, I continue with the catheters and ointment but have resigned myself to needing some form of intervention in the future.

Is there any UK based organisation or group that those with this condition can either get good impartial help or can at least where experiences can be shared. Is there an alternative medical, homeopathic or surgical procedure that anyone can commend? How many others are as traumatised as I am with the prospect of such serious surgery with very little information and no apparent psychological support?

Would appreciate any guidance that can be offered.

N

I'm 55 years old and was
circumsized at birth. April 11th 2008 I was diagnosed with BXO by a Urologist. My primary complaint is decreased flow and greyish/whiteish pus and a dried residue gluing the urethra closed where I have to pry it open but no pain. These symptoms started about 6-7 months ago. I'm not certain exactly how he arrived at his conclusion, he did mention the white ring around the urethra on the glans, but there was nothing more than the physical exam he conducted, no biopsy, no xray etc but I did give a urine sample. I didn't get much information from him, in fact he suggested I go on the internet to find out more about the condition. He mentioned two options for dealing with it, one was surgery the other was doing it myself at home. I'm not sure what he meant by that though, he didn't elaborate. I wonder if he was refering to urethra replacement or a graft for the surgical option and doing it myself by simply doing what I'm doing now by opening up the uretrha with my fingers?

Hiya

My boyfriend was diagnosed about 3 years ago with BXO.

'DANR2013 regarding the doing it at home your self'
The only thing I can think that he means is BXO gets better and worse when it's worse my boyfriend has to use any type of lubrication and the hospital give him a pointy wooden stick very similar to a golf tee believe it or not! they have in various sizes and 2 or 3 times a day he has to open up the hole so it doesn't just stick close.

Noddy

Whats the latest with you?

I have also been burying my head in the sand when it comes to surgery.
I have been opened up twice in the past, the last time was 5 years ago and after that time I was told that the next stage was fillet the penis, skin graft and then have the 'open wound' for about six months! Upon hearing that I decided the best option was to carry on as I am and see what happens. I have been using catheters on and off for the past 5 years and am dreading going back to the eurologist as I know the codition has worsened.

It seems to be at xmas when it is at it's worst, can this be linked to the increase in alcohol consumption?

I'm supposed to be emigrating in the next few months but as the condition has worsened it looks like it'll be off for a few years if I stay and have the op.

Not sure what to do!!!!!

I haven't raised the subject with my wife yet, just don't know how to, especially as we're all looking forward to the big move, kids as well.

Any suggestions would be gratefully recieved.

S

hi

i just found your bxo writeup. wow!

i've had bxo for 3 yrs with 7 trips to the ER for a catheter..

i just completed urethraplasty- split head down to thinner part of penis.
clob helps..

urethra is still restricted so i might be like you in due course.

email me if you have any info or news...

good luck to you

thomas

I was diagnosed with BXO in 2002 when my ex girl friend tore my banjo string. Unfortunately the doctor didn't seem to think it was much to worry about. She just said I may need to get circumcised if it gets worse and that should cure it. Gave me some steroid cream too, which didn't do much.

Any way. It's progressed slowly without ever being alarming. Although sex often aggravates it.

Recently I when to a Urologist to see about circumcision. He said He would need to cut off more than just the foreskin as I now have patches on my glans. Obviously I freaked out.

Looking on the internet I found some medical reports of occasional successful treatment with long term antibiotics. The thinking being that BXO and LSA is SOME TIMES linked with infection with a type of Borrelia bacteria. It's the same or similar bacteria that causes Lyme disease. I was hoping I could persuade my doctor to try this, but as I have no other symptoms of Lyme disease I can see why she is reluctant. I'm now trying clobetasol cream.

So what I would like to know is:

Has anyone been treated with antibiotics for this? Did it have any effect?

Have any of you guys been bitten by a tick and have any other weird symptoms or medical problems? Lyme disease causes an incredible long list of conditions, and can also be asymptomatic or dormant for years.

From what I've read it seems clear that you can have BXO without having a Borrelia infection. So antibiotics will do nothing for you other than make you feel like crap.

If anyone's interested, email me and I can send you copies of the few medical articles I found.

The remedies like nitric acid, merc sol and sulphur may help here. Those who are interested in homeopathic treatment may give further details so that the indicated remedy may be suggested.

Surgeon's name in UK is actually spelled Aivar Bracka. You may want to check out this article. Very unfortunate since he seems to be highly skilled (search his name with the correct spelling and you'll find the article -doctor-abused-his-male-patients)
I've had the condition for about 6 years and am circumcised. Definitely seems to be spreading down the urethera (gulp). Have both read and observed over the years that diet is definitely a factor. More importantly BXO shows all the signs of an auto-immune condition. Since childhood I've had serious asthma, allergies and digestive problems, which are all related to immune problems. If any irritation is started by an infection/injury/repeated irritation the immune system goes too far and keeps adding scar tissue. Not wanting to jump too quickly into surgery, I've been trying to attack the problem with diet (eating the good and avoiding the bad). Have also observed over the years that the problem gets worse when I'm fighting a virus or sick in some way (immune system down.) I started a regime of barley grass+acerola powder+pre/probiotic a few weeks ago and will let you know how it goes. God bless you all, this is scary stuff.

Can anyone tell something about symptoms when BXO spread to the urethra.
And what are the first steps to do when you suspect on that.

Sabra/Girilal,
I've got Echinacea 1000mg (which state 1 daily on the bottle), Hypericum 200c & Thuja 30c - please confirm the dosage so that my husband (45 yrs) can begin immediately.
Kind regards.

BXO My Story
I first had the symptoms of BXO in 1991 I had swelling and tightening of the foreskin, lesions and due to erections the first of many scars, my sex life became almost non-existent.
I became depressed and reclusive; thankfully I recovered from this first attack of BXO and remained clear of it for about five years. Since then I have had numerous occasions where it has completely taken over my life.
During the years that followed I have tried everything that I could get from doctors, chemists and alternative therapies. All without any real success.
It wasn’t until February 2011, twenty years after that first attack. That I (through trial and error) discovered the main culprit that causes my BXO.
What I realize now is that all those Doctors and professors that have researched BXO and also LS. Were not sufferers and approached the subject through the medicate for the symptoms route, rather than concentrate on finding the causes.
Over the twenty years I have suffered this condition I have become more and more attuned to listening for the subtle signals that my body sends out.
Something that no matter how good the Doctor they could never do.
I have used myself as a human guinea pig (lab Rat) since I made a number of discoveries about my BXO condition. Using my own research and results I am puttting together an information pack. Which if followed could see you free of Phimosis (foreskin swelling) in as little as 48 hours and clear BXO completely in a matter of weeks.
SURGERY SHOULD ONLY BE CONSIDERED AS A LAST RESORT, If your interested Im on you tube bxo cure It's worked for me.

For over 30 years my BXO got worse In 2006 I contacted Dr Shelly who was at the time the expert on BXO. He recommended a concentrated dose of antibiotics over a 3 month period. It worked! I saw a radical improvement with my BXO and it stayed that way for about 2 years. It started coming back and again tried the antibiotics. This time, it held it in check but has still come back slowly, but not as bad. I have read now that some believe that it is an autoimmune problem and I still believe that it is due to spirochetes in the bloodstream. I started taking this product 2 weeks ago, and OMW It is clearing up my BXO.. Better flow, less swelling. WHY? This product boost the immune system, activates white blood cells and goes after Lyme disease (spirochetes) GET this product.... EMAIL me fvproductions1 at windstream dot net

To danr2013
Saw your post from long ago on 2008-04-13. What happenned? Did you have BXO? I believe you said you were circumsized at birth. I was also and believe I have now have BXO. I am desperate. I believe it is heading to surgery ultimately, and I would rather get that over with now than have to live like this until things get unbearable, but I don't know if I can find a surgeon willing to perform a glansectomy or glans resurfacing with bxo or at least not until it is very bad. I hope you get this, and I hope you can respond, and lastly I hope you are doing well.

girilal said Thuja has everything to do with abnormality in Penis tissues, that's how Thuja was discovered.
First try the lowest available potency, if you see any effect at all (good or bad) shift to the Thuja 30 one a day for some weeks or use the diluted version of low potency thuja.

Hey girilal! Any update on whether Thuja made a difference or solved the problem?

stewy777 said so if you have just been diagnosed with bxo use homeopathy as well as doing what the doctor says'.stewartie777
hoymail.com contact me if you need more info.[/QUOTE

Did the grafting/surgery last for you? You said they estimate a 10 year life span for the grafting - you're about 16 years in... how is it going?

Any words of advice, caution, or otherwise?
Tried emailing you but it bounced back.
Thanks.
[Edited by dragonreborn on 2020-09-11 19:13:04]