Health Organization for Pudendal Education

Hi everybody,

I have been sitting and thinking a lot in this last year. I have had some extremely low points, felt lonely without people understanding, lost yet another relationship who thought they could cope but could not. I am in a very strange place and have been for a few years. I have nearly ended everything a few times or at least thought about it when things get really bad. Life is hard enough especially with the current economic climate, without having this condition!!

I have read some of the posts on this site and to be honest, i have the the greatest respect, feelings and understanding for all of the people on this forum. I must say i read a post from Candice, i think it was and her story really touched me and really pulled on my heart strings. She has had horrific PN problems from around 18 causing all sorts of issues with relationships making her feel secluded from her friends and other people.

However, on a positive note i have found this site and you guys and it has really helped me in my journey!

The reason for this post is after a lot of thought i am wondering why people do not meet up and get together to chat in groups. Why cant we try to get together as a group and try to create more awareness about this condition, or try to encourage more research and development for this condition. I think the biggest problem is a lack of understanding, awareness and development in the medical sector.

I know here in the UK we are way behind and GP's have practically no understanding of this condition.

I have been thinking how can we do something positive. I would be up for meeting and trying to push for more help. I havent got a lot of spare cash at the minute, due to not working and trying to keep my mortgaged house, but would still love to meet up with people and at least try to push for more help.

I am currently working as a volunteer one day a week at The Hull Drug Intervention Programme, and really enjoy it. It has really opened my eyes to just what problems these people face. I used to be a Production Manager working 70 hours per week, earning great money living a good lifestyle. I was in my little bubble world, just like everybody else trying to survive and enjoy life. But i found that i would like others be quick to judge such as drug addicts and brush them all off with the same brush. However, now i have had time to spend with some of them and some ex addicts who are now in recovery and doing volunteer peer mentoring for other addicts, i have realised most of them are lovely guys trapped in this cycle of life. I now realise the importance of awareness from others in society to get away from this stigma attached to these people. Until this happens they will have little chance of fully recovering and integrating in society.

I know this sounds strange, but when i listen to them talk, they are actually very ill, often suffering with severe depression and anxiety. Due to my experience with PNE i can actually relate to them more so than ever before, because i feel many of the same feelings including seclusion and loneliness. I have people who live down my street who know i am now not working and have absolute no understanding of what PNE is or how it affects you. They always ask me are you working yet and are you keeping busy. I can feel them judging me as lazy or a hypochondriac. This makes me feel horrible, particularly because i have always worked since leaving school and never claiming any benefit. I have even had visits from the local benefits office claiming somebody has contacted them saying i have a lady living in my house with me, which is completely not true. My ex girlfriend would maybe stay once in week maximum. I have never done anything to upset nobody and i am very helpful to anybody. It really upset me for a long time to be honest because they have no idea what i am going through.

I have been completely let down by the NHS, especially with my back injury having a scan 7 years after the injury!! I have had to practically tell my doctors what to do, otherwise i would not be no where near as far on as i am. Then i have my work problem, having lost my long term job after 10 years due to my pain having a huge affect on my performance. I now don't know which way to turn because i am limited to what job i can do and nervous to take a job because my spine surgeon or PN consultant may tell me i need surgery in the next 2 months! I have applied for disability allowance but been refused!! My mortgage protection has finished this month!! I am now living in negative equity on a monthly basis, with my family helping me!!

What i am trying to say is it is hard enough in life now with the current job and economy situation, everybody is feeling the strain. But with PNE it is ridiculous!! The problem is due to a lack of awareness and help for this condition.

Which after waffling brings me back to the point that maybe we should be trying to work together to push for more awareness, research and development for PNE.

I am sorry i know i have once again waffled but i really do think it could help us all in the long run. I would gladly do my bit and meet up to discuss some plans.

You all probably think i am crazy, but i am just trying to be positive!!!

Hello Stratts,
I feel you pain. I to have neighbors say, hey when you going back to work! They see me out side doing light yard work. It does not look like I'm in pain, but boy I am. I too worked long hours 89 hours a week and another 20 from home. So everyone was use to me working all the time. I live in the USA where things have gotten very strange in the political atmosphere over the last 12 years. It seem that god for bid your disabled you are labeled lazy. There was a time in this country when we took care of our sick and elderly. Not anymore and it makes me ashamed at times of how we become as a nation. Your are right people do live in a bubble. Is seems everyone at least in the states have over extended them selves with big homes and expensive cars. I admit I am one of them. I however always put money away but it goes fast when you are not working. I have only have had PN for about 5 month and I'm wondering now if I will ever get better. Please continue to help people. If it gets you thou the day. Well that's a good thing. Good luck my thoughts are with you.
redz

I'd love to see some folks get together here in MN. It'd be great to have someone understand what's going on for once! Any takers?

Stratts, I like your positive attitude and I think it would be wonderful if we could meet. I certainly don't think you are crazy! I guess the reality is that it would be a challenge logistically to meet in person but maybe through the HOPE website, forum, and organization we can start to make a difference.

Hi Guys,

Thanks for your replies.

I agree logistically it would be hard for us all to meet from this site. Obviously you guys in the US would find it difficult to meet us guys in the UK!!

To be honest it would be probably much more difficult and distance for you guys in the US to even meet each other due to the size of your country compared to our little tiny island!!!

However, i am sure it would be possible for UK members to meet up at some point in the UK. It would be to meet everybody from all over everywhere but i appreciate it may not be financially achievable, i know it would not be for me right now.

Despite this i still think it would be beneficial to at least try to meet people in your country or close to you and try to push for more development, research and understanding of the condition. From my experience in the UK if you dont push for help then you wont get it!! It sound similar in the US at the moment?

We could always for groups who stay in close contact and share information. At the end of the day we are all in the same boat!

And Retz i totally understand what you said. I too have done some light duties in my garden or tried to keep busy, more so for my mental state. Due to the fact i am used to never stopping and just getting on with it i cannot just stop. It does cause me horrific pain but it is a tug of war between physical and mental pain. I have always said if you don't bleed people think their is nothing wrong with you. I can see when i try to explain my condition people just don't get it. They think you are exaggerating or lazy. Thats why i was using the comparison with the drug addicts i work with. They are in a similar position with judgements passed without understanding.

To be honest my friend things are getting horrific in the UK at the moment. I have heard of people who have lost their limbs in Iraq and Afghanistan and been refused disability allowance. I have also heard they are considering taking it from blind people. The government are trying to stop Disability Allowance all together and replace it with something else. Thousands of genuine people who need help will lose this benefit.

I used to be proud to be British Retz, just like you used to be proud to be American, but i too am absolutely disgusted and appalled by this. I am 100% sure that if every UK citizen was asked if we think the people who have lost limbs fighting for their country should get disability help, that all of them would say yes. The Governments are doing what they like, lining their own nests. I heard on the news that our Government has £800,000 worth of wine in its cellar for socialising events. I could not believe it!! I thought how can they justify that when people as discussed are losing their benefits. Not to mention all the politicians expenses scandals that's been coming out of the wood works here in the UK. It is a JOKE to be honest i call them fat cats, they abuse the tax payer. I always say how can somebody with absolutely no understanding of an illness or pain make a judgement on how debilitating it can actually be??

So yes Retz my friend, things are the same her too!! In fact we are so far behind with spine, nerves and pelvic floor illnesses its shocking!

This is why sometimes i think we should push together as a group for recognition. Individually we are nothing and can do very little, but as a group it may be possible?

I applaud the idea and I understand the struggle. I have tried to reach out and help the locals to me, but may need too rethink the bigger picture. Fortunately I am on the other side or surgerybut still not sure post op a year if I will stay this well and continue recovering. Most of my energy is focused to keep my job and finish the last 3.75 years. Maybe when the treatments lighten up I will have more time to help. I just completed a second full day at work and people still do not realize this is true they thought I was full time months ago. Also no idea I am just able to get by and not much fun yet. I am grateful to be in this better than others state and had always planned to retire and volunteer, definitely have time then to support the effort. I just thought today that I need to update Dr Marvel inhopes he will use the data for future and getting info out and documented. Thanks for your story Stratts and everyone's input. FYI I amd in Maryland in the U.S.
Janet

Stratts, I could not agree with you more. Keep hope and keep doing the lite working around the house. YOU are right we all need to have good mental health to make it thro the day.
your new friend
Redz