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I have had enough of this.

Posted by Emily on 25/6/2009, 2:36 am

Hi,

(I am SO sorry this is so long. I only really have one question at the end the rest is just background/history.)

Just a quick introduction, my name is Emily, I am an 18 year old female, live in England and have been suffering with this (paruresis) for as long as I can remember.

I am effectively coping with it, in that I go out and live a day-to-day life, however most of my daily life is somewhat based around this. I am unable to use public bathrooms, and frequently have to come home during free periods at college and breaks at work, which is gradually destroying my social life to the point of non-existence. Although, luckily both of these places are within a 15minute walk.

In September I am due to start university. I am going to uni in my home town due to family reasons, but my decision was also swayed by this problem. Uni is within an easily commutable distance.

However. Next summer (2010) I have the opportunity to go abroad to somewhere I have wanted to go to for a long time. This is my problem. I SO badly want to go on this trip, but right now, that isn't a feasible option. The sole reason for this is paruresis.

This got me thinking about how much of my life has been destroyed by this, and I finally feel able to talk about it now, and overcome being ashamed to get help. I just keep thinking now how much better/how much more free I would be not having this problem.

So. I thought about my options.

(My current situation is: the only place I am able to pee is at home, and sometimes not even then if I am stressed about it.)
1. CBT or counselling. I have previously had CBT for this problem, and it was partly successful (being able to go in non time pressured situations in bathrooms away from home where I felt safe most of the time) however this then failed and went back to before the CBT.
2. Do nothing and be miserable.
3. Catheters. I feel that this would be the best option, as it would:
a) allow me to pee away from home in very stressful situations
b) give me a "plan B". If I am stressed about peeing I can usually work through the "I can come back in 10 minutes" & "people probably don't care if they hear you" at home, but the one thing that always gets me is the "If I don't pee now, I will have to wait for [long amount of hours]" i.e. if going on a long car journey and not being able to go on the journey. I feel that if I have a "plan B" I will be able to work past that to the point of not actually having to use "plan B" just knowing its there.

Question:

How do I gain access to catheters? From this message board I have found http://www.coloplast.co.uk/ which seems good as it is a UK company and has compact ones I could take travelling / seem easy to use, etc. I don't seem to be able to order off the website.

What am I supposed to do? Should I see my GP to ask about it? Will they definitely allow me to use it (i.e. not make me attend CBT)? I am happy to order them myself but to register on the site to buy you need to enter GP details. I'm a bit confused!

Thank you for any help, and apologies for the length! Emily xox

Re: I have had enough of this.

Posted by alex on 25/6/2009, 8:02 am, in reply to "I have had enough of this."

Hi Emily
I can understand your frustrations
as a psychologist and psychotherapist I know this is not an unknown or uncommon phenomena
What is good however is that the CBT did work for you before.
But it didn’t seem to stick as they say.
There are several possible reasons for this that I will not go into here
One however is that you may not have had a support mechanism at the time to keep up the new cognitions and you may have slipped back into the habit of retreating to the security of the home…easy to do and only a15 min walk away
In this forum you will get help and support and may even access personal contacts in your area that would help
Also the workshops are very good to help consolidate progress
Consider getting to one as soon as yon can
I know that the UKPT do have arrangements that cash help financially if this is problem
Also consider returning to the psychologist on the basis that there was some degree of success before
(Although I get the feeling you are resistant to this option?)
So option 1
the CBT is in my view desirable with a good therapist
Option 2
as you must know is not really an option
Option3 catheters
these have helped many people cope with the physical problems of bladder draining. But again in my view they are most successful when the mental or psychological issues are turned around
that’s the value of your plan B just knowing they are there helps
many people will be able to help you with information about suppliers
remember in paruresis there are two or four stages
the CBT deals with the last ones; that is to help you cope with this problem
stay in touch and let us know what is happening
alex

Re: I have had enough of this.

Posted by Emily on 25/6/2009, 8:16 pm, in reply to "Re: I have had enough of this."

Thank you Alex and Andrew for the responses.

In regards to CBT, yes it did work to a certain degree. It worked in some situations, but it never got as far as working in highly stressful/time pressured situations, and never got as far as working 100% in the non stressful situations. However having it helped with other anxiety (such as social situations/giving class presentations).

I am willing to try CBT but am not optimistic that it would work to a degree where I will always be able to go no matter how anxious/stressed I am in whatever situation, which is what I would be aiming for.

To an extent I can sort of do CBT by myself, after learning about how it works, the effectiveness of it and what to use it for during psychology AS/A2 level. I can identify thoughts and challenge them:

Thought: "I don't want people to hear me because they will tease me/laugh, etc."
Challenged to: "Everybody has to pee. Everybody pees in the same way (females, at least!). Water hitting water will make a sound. People are mature enough not to tease you about a natural bodily function."
&
Thought: (If out with friends) "I am taking such a long time and people will think I'm weird."
Challenged to: "If I take a while I can go back and say there was a queue and I didn't want to wait. It is ok to wait for something to happen. It is unlikely everyone else will be super quick/go as soon as they get there".

Doing this helped previously. It now doesn't though. But, I could never ever get the "if I don't go now I'll have to wait" one changed.

This is why I feel that Plan B/having a catheter would be helpful, as it would, as Andrew said, remove so much anxiety. Having a plan B in other situations has also been helpful to me (e.g. coping with exam stress is helped by thoughts of being able to resit, and knowing I can leave the room if I start to panic). So I think if I had it there, I wouldn't necessarily need to use it if that makes sense?

I will make a GP appointment to ask them about getting a catheter. I am prepared to "fight my case" as it were. I think I have thought about it enough to arrive at the best option.

-If it is on prescription does that mean that they will order it?
-Who will pay for it? Me or NHS?
-Is it expensive?
-Is there anything I can say if GP is adamant that its a no? (I have the option to see another GP if one is really not understanding).

Thank you both so much for your help! (& apologies again for length, even though you said not to!)
Emily.

Re: I have had enough of this.

Posted by Andrew on 25/6/2009, 9:19 pm, in reply to "Re: I have had enough of this."

Hi Emily

RE "I dont want anyone to hear me". Co-incidentally I was talking about shy bladder with a woman who has no problems going anywhere, but is slightly affected by being able to hear others peeing, and so by implication being heard peeing by others. She said she does what her daughter did when she was 3 and playing hide and seek i.e. covering her eyes and so thinking that because she could not see her Mum, her Mum could not see her! So she blocks her ears. Worth a try?

Re your questions: it is on prescription, so I assume you will have to pay something towards it. Cant be high because no-one else has mentioned the cost.

If you email me your address (in confidence) - the email address is at the top of this page - I can email you an article from Professional Nurse magazine in which continence nurses advocate the use of ISC for self-management of urinary issues.

cheers

Andrew

Re: I have had enough of this.

Posted by Emily on 29/6/2009, 7:36 pm, in reply to "Re: I have had enough of this."

Hi Andrew,

Thanks for the reply, and sorry about the delayed response!

Yes, blocking ears is a good idea, thank you. I think I might have tried it before, but I'm not sure. I think it may help in the safe/non-time pressured/I can go home if need be situations as a starting point to trying to get used to it again. I know sometimes at home I have found it easier to go at home when having earphones in and then kind of realising afterwards, "oh, I had earphones in and felt less anxious".

Thanks for the extra info about the prescriptions.

After posting this I'll send you an email, as the article sounds interesting.

Emily xox

Re: I have had enough of this.

Posted by Andrew on 25/6/2009, 8:18 am, in reply to "I have had enough of this."

Hi Emily

Firstly please do not feel the need to apologise; this is what this forum is for: to unload to an understanding and supportive group of like people.

A quick answer: you go to your GP and ask to be shown how to do ISC (intermitent self-catheterisation) and why. The reaction can be varied, from OK lets do it, to NO that is not the solution, and that infection is an issue.

If the GP says it is not the solution, you will have to be assertive and challenge them as to what you are supposed to do. There is no answer to that.

As for infection; yes the infection rate is higher for women for obvious reasons, but again is it the lesser of two evils?

BTW the caths are disposable use-once items obtainable on prescription.

You are right when you say that it would give you a plan B. Furthermore, people often find that having a plan B removes so much anxiety that they do not need to use the cath; e.g. "If I don't pee now, I will have to wait for long amount of hours" would no longer apply, allowing you to work through the other negative thoughts.

Finally do consider coming on a workshop; that will give you the chance to practice in a self-controlled way, and to pick up a lot of helful tricks and techniques.

And.. do post again and never mind the length OK :-)

Andrew

Re: I have had enough of this.

Posted by Mark L on 26/6/2009, 2:51 pm, in reply to "Re: I have had enough of this."

Hi Emily,

Thanks for sharing everything! The more the merrier lol.

It seems like now is a good time to really tackle this with your potential trip next year.

I aggree with everything mentioned above. I have just gone through the process of obtaining catheters as I am worried about my stag night and long day trips on my Honeymoon. See here:

http://members.boardhost.com/paruresisUK/msg/1237158400.html

First, I saw the GP. He wasnt aware of the condition. I saw him 4 years ago about getting a catheter and he didnt aggree (infections etc). This time, I knew what to say and said 'what do I do when im stuck on a 9 hour flight?!' Remember its your choice, so insist if you need to.

He aggreed and refered me to the hospital where I saw a urologist for a consultation. He aggreed it would be a good idea and was also unaware of the condition. A month or so later, I went back and was shown how to use one by a nurse. I was given about 4 or 5 to take away with me.

They are not expensive to buy yourself, I was given a website so if you want me to find it let me know. Anyone can buy them from it.

I would strongly suggest catherers and also to book onto a workshop. Dont be put off by this being a male dominated condition, women do go on workshops.

Keep us updated!

Take care,

Mark

Re: I have had enough of this.

Posted by Emily on 29/6/2009, 10:45 pm, in reply to "Re: I have had enough of this."

Hi Mark,

Thanks for the reply and sorry it has taken me a while to respond.

I read your post about obtaining catheters, and it was very informative, so thanks for linking to it. It seems like getting catheters has helped you and helped with knowing that its there if you need to use it. I hope your stag night and Honeymooon and everything goes well!

I think going to my GP would be the best thing to do at first, to see what they say. I vaguely mentioned it before when I went to see them about anxiety and they just seemed brush it off as "general anxiety" or something. But hopefully with all the info I have now I'll have more success.

Depending on what the GP says the website you have might come in useful, although, if its not too much trouble, would it be possible to find it for me please?

Yes, the workshops do sound like a good idea, and the success stories from people after going to them seems really good. I'll definitely think about it, although I'm not entirely sure how I'd get it past my parents (as I still live at home, and they'd want to know where I was going) but maybe/hopefully in the future.

Thanks.

Emily

Re: I have had enough of this.

Posted by Mark L on 30/6/2009, 12:53 am, in reply to "Re: I have had enough of this."

Hi Emily,

As for your parents... Most of the people I have talked to about this condition have told their parents early on. The more people you tell, the more pressure it takes off. I personally have only told my parents ans my Fiancee.

If you still dont want to tell your parents, then just make up something, ie: college related trip, weekend away with friends etc. It would be a shame to put up with this for longer than you need to.

I have included my email address so hopefully you can click my name and send me an email. I will then send you some advice about obtaining them (written by another sufferer)

For now, here are some links:

http://www.hollister.com/uk/products/product_series.asp?id=2&family=57&series=298

http://www.astratechuk.com/Main.aspx/Item/465468/navt/73077/navl/73086/nava/77376

http://www.flocath-quick.co.uk/

http://www.coloplast.co.uk/ECompany/GBMed/Homepage.nsf/1989cec9be30ee68c12569ff0036969d/7bde46d6b120b20e00256c5b0044a55c?OpenDocument

All the best,

Mark.

Re: I have had enough of this.

Posted by Colin on 30/6/2009, 8:21 pm, in reply to "Re: I have had enough of this."

Hi Emily
You will feel heaps better if you can summon up the courage to tell your parents what you are going through on a daily basis. They are your parents, and if something is worrying you, they really would prefer to know. And you will find that they understand perfectly.
Take a look at the script at http://www.ukpt.org.uk/first_visit/first_visit_How_to_Tell_Someone.htm
and run through it first, then just sit them down and quietly tell them. You could always just give them the script to read.
You will be so surprised that alarm bells do not ring, and no-one makes a fuss. It is a big deal to you, but most likely not to them. Most people report that actually afterwards it was a bit of an anti-climax compared to what they had feared. Please try to tell them, and ask for their help in booking onto a workshop as soon as possible. It really will help you overcome this nasty problem we all have, and put you back on the path to a happy and enjoyable social life.
Remember everyone one on this site is here to support you. Keep in touch, and let us all know how it is going.
Colin

Re: I have had enough of this.

Posted by alex on 1/7/2009, 2:15 am, in reply to "Re: I have had enough of this."

for sure tell your parents in the way Colin suggests
I would not advise making up a tale
paruresis was once known as the secret phobia
lying is a process that only increases the anxiety factor in my view
bite the bullet
start to open out on this
all the evidence shows that it helps
use material from this site and others to inform parents or the GP
if you need more help... just ask!

Re: I have had enough of this.

Posted by Pete L on 1/7/2009, 8:45 am, in reply to "Re: I have had enough of this."

Hi Emily

Colin is right, your parents would be best to know about this as they wouldn't wish for their daughter to struggle through something on her own.

You don't have to feel like you've let them down or anything, completely the opposite in fact. Just by approaching them, you add strength to a family relationship. What are parents for afterall..... other than money and taking out your frustrations!!!

If, as Colin said, you find it difficult, just let your mum and dad read the 'how to tell' notes and then answer any questions they may have. In addition, it may be helpful for you to let your parents read your own post, and the replies to your post. You could even go one step further and let them spend some time reading several other posts!!

Your parents may not fully understand the severity of Paruresis and the effects it has on peoples lives, however, they too can seek advice on this website so as to find out what can be done to help. Sometimes, you can explian until you are blue in the face but it still doesn't sink in. So, let them read it in their own way, as if reading a book. They may well connect to this quicker than you think. Then you will feel great relief (pardon the pun!)

The most important thing to remember, and to keep saying to yourself, is that you are normal, and everyone who has this condition is normal. I was one of those who recently attended the workshop this weekend, I would have never believed, before I went, the change it would make. We all entered that workshop feeling anxious, nervous, pesimistic and many other negative thoughts......... this is perfectly normal, Emily. Then, here comes the good part, you WILL come out of that workshop on a massive high having accomplished........well, that part's up to you!!

I am sure that, between you, this website and ALL OF US, we can help you. Let us know how it goes.

Best wishes

Pete

Re: I have had enough of this.

Posted by Jane on 9/7/2009, 10:18 pm, in reply to "Re: I have had enough of this."

Hi Emily

The attitude of GP surgeries to catheters seems to vary, but it is worth persevering. The practice nurse where I go, and the GP, were against me using catheters, but reluctantly referred me to the urology department at the local hospital, where they were really sympathetic and helpful, they knew all about paruresis and have given me ongoing support. I was lucky to have the support of the mental health nurse at the surgery too, she had not come across paruresis before, but talked to colleagues and found me lots of information. You are doing just the right thing in tackling the problem now, I am 62 and have had it since my early 20's, did not know until a year or two ago that it was something other people have too! Good luck, let us know how you get on. Jane

Re: I have had enough of this.

Posted by Colin on 9/7/2009, 6:33 pm, in reply to "I have had enough of this."

Hi Emily
You have had a lot of good support and encouragement in response to your original post.
How do you feel now?
Are you encouraged to take the next step? Or can we help in other ways?
There will be lots of people reading this board (including myself) who would like to know what your feelings are having got this off your chest on the 25th.
Has the board been helpful to you?
Colin

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