Hi from UK

[johnd.h]

Hello everyone. I don't know whether 'Divine Guidance' got me to this fantastic site but whatever it was I'm grateful. I am yet to be diagnosed with PN but everything I have read on the HOPE website points to that being the likely cause of my pain.

The problem started for me at the beginning of July this year and has been very painful at times, particularly when seated for any length of time. Lying down gives relief. I have had numerous tests including Colonoscopy, 2 MRI scans (pelvis and lumbar spine) and Ultrasound, none of which have shown up any cause of my pain. Naturally I am delighted that I haven't seemingly got a life-threatening condition, but it is also very frustrating not knowing what the problem is. I have now been referred for Nerve Block injections, (Botox was mentioned by my Consultant) and I am waiting for that to happen. However, I have not been told what exactly my Consultant suspects the problem to be. I found this site purely by accident on Google when I searched for reasons why my bowel movements have increased significantly.

From reading other people's experiences, I have to say that my symptoms are very similar. I have been fighting back the feeling of depression and thinking that I am the only person with a similar problem, which will never be diagnosed, and that I am destined to spend the rest of my life in pain. Finding this site has given me hope, and whilst a diagnosis is yet to be made, I now feel a sense of relief that I am not alone in having these painful symptoms. I somehow need to find a way to continue my life as normally as possible, but avoiding sitting down is not possible, partly due to the type of work I do, but also because I have to drive a return trip of 130 kilometres a day.

Can I just say thankyou to all who contribute to this website, I know it will give me a degree of comfort and provide me with much needed information on real-life experiences from those who know what I am going through. Indeed, there are many who have suffered even more than me, and I wish them well.

John

[Karyn]

Hi John!
Welcome to HOPE. I'm very glad you found us and indeed, you are not alone. Many of us have gone through years of doctors with no concrete diagnosis.
Hopefully, this site will point you in the right direction in your quest to being treated appropriately. Can you remember a particular incident that set your pain off this past July? Please feel free to ask as many questions as you like and we'll try to do what we can to help you.
Warm regards,
Karyn

[johnd.h]

Hi John!
Welcome to HOPE. I'm very glad you found us and indeed, you are not alone. Many of us have gone through years of doctors with no concrete diagnosis.
Hopefully, this site will point you in the right direction in your quest to being treated appropriately. Can you remember a particular incident that set your pain off this past July? Please feel free to ask as many questions as you like and we'll try to do what we can to help you.
Warm regards,
Karyn

Thankyou for the welcome Karyn, I have already learned much from reading the experiences of other members of the site.
I did in fact suffer a sudden severe spasm of pain in my back earlier in the year, when lifting a heavy weight in the Gym and I'm now thinking that might have triggered the problem? As I mentioned in my initial post, I had not been aware of what exactly my Consultant thought the problem might be and so I have just phoned him and asked. His response, a problem with the Pudendal Nerve. At the same time he has told me that my appointment for the Nerve Block injections in next Monday, November 8th. I am not expecting any miracle results from them as I gather from reading lots on here that they are as much as anything about diagnosis as potentially healing?

Kind regards to you, and thanks again. I hope you are well.

John

[Karyn]

Hi John,
Wow! It's fantastic that you found a doctor who is familiar with PN! I'm so excited for you! Do you mind if I ask which doctor you're seeing? Yes, your deduction is correct about the nerve blocks. They're used more as a diagnostic tool. Some have experienced temporary relief while others (myself included) have experienced horrific pain flares from them.
To date, I haven't heard of anyone being cured from a nerve block. So, you're a weight lifter? Did you happen to catch the thread, "How does weight lifing affect the Pudendal Nerve". It's under the topic: Causes and Effects of PN.
Please let us know how you make out with the blocks next week!
Warm regards,
Karyn

[johnd.h]

Hi again Karyn. I do feel very fortunate in finding a doctor who is familiar with PN, his name is Mr. J. Adamek, he works out of several hospitals in Kent and London. I was referred to him by my General Practitioner for Colo-rectal examination, which as mentioned previously proved to be clear. Mr. Adamek has now referred me to a Doctor Lobo, a female Doctor of whom I have no knowledge, for the Nerve Blocks. Here's hoping I am luckier than you with the aftermath.

Yes, I read with interest the information regarding weightlifting, it kind of confirmed what I suspected in a way, guess I'll be leaving the weightlifting alone for the forseeable future (o;

I'll gladly let you know how I get on with the Injections, not exactly looking forward to them, but as I believe someone mentioned in one of their posts they are part of the process and so we have to get on and deal with it.

Kind regards,

John

[KRISG]

Hi John ,

Welcome. I think too that we can help each other in finding the way to real help.
Of course as a member of many years now , I know that because of the fact that every case is different, there are allot of things that could or could not work for you ., but this site can help you finding the right direction for you ..

Indeed ...weightlifting is THE number one causes I found in my survey of PN and PNE ..

Hope you have good luck on the injections

Kris

[johnd.h]

Thankyou for the warm welcome Kris. I am so glad that I have found this site, it is very comforting to know that I am not on my own here. Obviously my family and friends are here to help, but they know nothing about this condition, and it is only in the last 24 hours that I have started to gain an understanding myself. I do hope that in time I will be able to contribute to this site to help others the way I have already been helped, as you say Kris, we can help each other.

I will be sure to post up anything of relevance to the condition through my own experiences in the future, hopefully encouraging news.

Kind regards,

John

[gracie]

Hi John,

I am wondering what kind of work you do? You mentioned that due to your work you have to sit a lot. You also mentioned the driving involved. Have you had a chance to look at all the info on seating accommodations? I actually do better with hard surfaces, but there are also those who use cushions. My work also got me a stand up work station so I don't have to sit all day. Some people think it really stinks to stand all day, but I just look at as bank tellers, phamacists, hair dressers, they all stand all day. It is really no different.
Good luck to you with your nerve blocks and glad you found us.

Gracie

[calluna]

Hello John - I have just been replying to a post from you on another thread!

I too felt that I had found a lifeline when I discovered this site - well, the old site actually, but you get my meaning. I would echo what gracie says about seating - I have got so used to the fact that I do not sit except with my cushions, that I have almost forgotten about it. And it is very important! I am one of those who uses cushions, either a doughnut cushion, or a soft pillow, or a boppy or widgey pillow (I got mine from Amazon).

I think it is interesting that both you and I have immediately found doctors who are familiar with PN - maybe there is greater recognition of this in the UK? The Pain Clinic have told me that they've dealt with it several times.

I hope that all goes well with your nerve blocks, and I hope that you are soon referred to a good Pain Clinic, too!

[johnd.h]

Hi John,

I am wondering what kind of work you do? You mentioned that due to your work you have to sit a lot. You also mentioned the driving involved. Have you had a chance to look at all the info on seating accommodations? I actually do better with hard surfaces, but there are also those who use cushions. My work also got me a stand up work station so I don't have to sit all day. Some people think it really stinks to stand all day, but I just look at as bank tellers, phamacists, hair dressers, they all stand all day. It is really no different.
Good luck to you with your nerve blocks and glad you found us.

Gracie

Hi Gracie, thanks for your interest. I train Estate Agents (Realtors) which does require me to stand for long periods of time luckily, but does also involve a fair amount of sitting down using my pc on those days that I don't train. Unfortunately because of the fairly long drive that I have, the pain has usually started by the time I get to work. However, having read the info on seating suggestions yesterday my wife bought me a doughnut type cushion which I used this morning and it certainly has helped. I now intend to get another one to place on my chair at work. Interesting that you do better with hard surfaces Gracie, I've tended to steer clear thinking it would exacerbate the problem, I'll have to give it a try also.

I'm anxious to get the nerve blocks done on Monday, thanks for your good wishes in that regard. I'm delighted that I found you good people also.

John