Hypospadias Support & Education – Welcome

This site is published by the Hypospadias UK Charitable Trust, which has been formed to support men and boys with hypospadias.

The site is written for boys, men, and parents of boys, with the aim of providing basic information and advice for anyone who has the condition called hypospadias. This is a relatively common birth defect, but it is rarely discussed, and very little has been written about it for the lay reader.

Of the four persons who have contributed to this website, three have hypospadias themselves and the fourth has extensive experience in discussing issues and counselling men with the condition.

The level of discussion and presentation is intended to be suitable for people without specialised medical training. We have included commonly used terms instead of scientific names in the hope that this will make the material easier to read and understand. Where appropriate we have given the anatomical or medical term in brackets ( ).

This site is NOT meant to be a scientific review or a discussion of the relatively little scientific and medical literature that has been published to date about hypospadias. However, some of the issues discussed here are based on authoritative sources, and references can be provided if required.

None of the authors of this site is a surgeon specialising in hypospadias. It will quickly become apparent that we believe that there may be too much emphasis placed on corrective surgery at present.

While the severity of your difference from the normal may call for surgery in many cases – and there are many examples of excellent work being done in this field – we think it is important to recognise that choosing not to have surgery is often a viable option which may deliver better long term outcomes, particularly if counselling and support are also provided as required.

If you want to take part in more discussions with men who have hypospadias, or see some illustrations and pictures of hypospadias, check out the discussion forum on Yahoo groups (over 18s) at https://groups.yahoo.com/neo/groups/HypospadiasMen/info

Other resources include the Hypospadias and Epispadias Association of America.

Facebook has many support groups – search on the words hypospadias, support, parents, etc and you will find many to choose from.

The Daily Mail has published some interesting articles in recent times:

http://www.dailymail.co.uk/health/

http://www.dailymail.co.uk/health/article-3349874/

http://www.dailymail.co.uk/video/health/video-1134877/

http://www.dailymail.co.uk/health/article-409521/

http://www.dailymail.co.uk/health/article-2064554/

and the Daily Telegraph

http://www.telegraph.co.uk/men/health/

And here’s a very interesting article by Professor Alice Dreger – Do You Have To Pee Standing Up To Be A Real Man?

 

Could You Help With A Research Project?

I am Dr Keeley Abbott and I am a researcher at Birmingham City University.

I am carrying out a research project (alongside Dr Jagjeet Jutley-Neilson) that explores parental pre-operative and post-operative experiences and concerns of hypospadias repair.

As such, I am interested in talking to parents who are considering surgery but perhaps may be uncertain of whether to proceed, or those who have decided against surgery.

The study involves taking part in a short (informal) interview via telephone or skype. The discussion will cover areas of concern pre-and-post surgery and decision-making/attitudes around surgery.

We are specifically looking to talk with:

• Parents with children pre-surgery (within 24 months of birth or in the last 3 years).

• Parents considering surgery for their child or those who have decided against surgery for their child

Please note – parents must also be English speakers.

If you are interested in taking part, I will send you further information about the study.

If you are happy to take part then you will be asked to sign a consent form before completing a brief online questionnaire. This will include some basic demographic questions, as well as contact information.

Please use the email address below to express an interest in taking part in the study or to receive further information.

Research contact detailskeeley.abbott@bcu.ac.uk

Please do not hesitate to contact me if you have any further questions. I look forward to hearing from you.

Dr Keeley Abbott

(and on behalf of Dr Jagjeet Jutley-Neilson).

Would You Like Some Support?

Resources for parents

Facebook closed groups are a very helpful resource for parents.  If you apply to join, you will need to answer some questions to ensure you are a parent of a child with hypospadias.  The sites are very friendly and supportive. Search on Facebook groups for:

Original Hypospadias & epispadias support group.

Hypospadias Parent Support Group (Pro-surgery and Pro-choice)

Hypospadias/Epispadias Support Group v2

Books

A useful book to read.

https://www.amazon.com/dp/1475088973/ref=cm_sw_r_cp_api_j02ZAbBCF6EK9

For men with hypospadias

If you want to talk with a man who knows what hypospadias is like, and get the support of sharing your experience, fears, and hopes, please email us.

We have all been through the experience of living with hypospadias, in varying degrees, and we know how important it is to end the feeling of isolation and aloneness with friendly support.

Information about hypospadias for men, boys and parents from the UK Hypospadias Trust