Effect of PNE and Pelvic Pain in your words

[Stratts]

Hi everybody,

As you are probably aware from my previous posts have had a long history of severe pain. My pain includes severe lower back pain due to 4 bulging discs in my lumber spine. The worst is L5/S1 which has a spondylolisthesis with nerve root compromise. I also suffer from very bad chronic pelvic pain including buttocks, hips, stomach, groin and suspected PNE causing very bad genital pain. The PNE also causes me issues with bladder and bowel movement.

One thing i have always struggled with is to try and explain to people or make them understand just how debilitating and life changes this condition can be.

Therefore, i am interested in other peoples interpretations of this condition and how it effects the following:

1) Motivation

2) Mood

3) Mental state

4) Socialising

5) Concentration and focus.

6) Ability to carry out simple chores such as house cleaning, washing your car or gardening, or the impact of such activities.

7) Ability to work in full demanding job role. ( I lost my full time long term job due to the affects of this condition)

8) Self Esteem

9) Ability to stay active and exercise.

10) Sleeping or finding a comfortable position.

11) Sitting (This is the most difficult for me. I get very bad pain within 30 min)

12) Driving and travelling.

13) Relationships ( I have lost two serious relationships die to my pain )

14) Sexual dysfunction ( I am able to have sex, however, not without serious increased pain, particularly in my genitals)

15) Bladder and bowel movement.

16) Muscle pain and tension.

I also struggle to try to emphasise just how severe the pain can be. My pain can get so severe sometimes it brings me to tears. I find the genital pain particularly disturbing. I can never seem to make anybody understand just how painful nerve pain and chronic pelvic pain can be, therefore, i would like to hear other peoples descriptions.

I also feel very isolated and lonely due to the vast lack of understanding of this condition not only by friends and family but even by doctors.

I am visiting my local MP on 15th June 2012 and would really like to get some other peoples views and experiences with this condition. I am going to ask her if she can help me to push for more understanding, help and research in this condition. It may be futile but i am going to try.

[PPSN_JudyB Pelvic Pain Support Netwo]

It would take a while to respond to this and I see that you are seeing your MP tomorrow ( Friday )

I hope he/she will be interested in pursuing this on your behalf. Please let us know how you get on and Good Luck.

[Hidden]

Hi

I haven't read your previous posts, but you are clearly suffering a lot from all your problems.

I too have a great deal of pain when sitting, which has had a major impact on relationships, work, hobbies etc etc etc.

I could write something for each one of your questions, but the simple answer is that it probably depends on how resiliant a person is. I have been taking my dog to visit an old people's home. Everyone there has problems, some are blind, some are in constant pain, some have very little movement, but there doesn't seem to be any correlation between how bad someone's problems are and the ones who are happy and the ones who tell me they are just waiting to die.

I've developed tinnitus this year, which is a real bummer and nobody will ever be able to understand what the noise is like or how it feels and it's the same with pain, it's very personal. When you are trying to communicate with people about your pain, think about what your goals are. Is it to get sympathy for example or so they'll make adjustments or so they won't take offence if you turn down invitations. I tell my friend in Devon that I won't visit him because driving that far is too painful, but I invite him to visit me. And I've told my friend that I won't be going to her child's 3rd birthday party because all the noise will make my tinnitus worse in the evening after. (Phew! - now I have an excuse.) Some pain management courses are good at helping you to communicate effectively with loved ones. If you haven't been on a course then ask to be referred, at worst you'll find it a waste of time, but it might help. Also the NHS is now offering training in mindfulness which can help some people to feel less anxious or depressed about their problems. One simple way to help communicate is to tell someone how you feel. E.g. When you keep asking me to go the cinema I get upset because I'm in too much pain if I sit for more than 30 mins, instead of I wish you would stop asking me to go to the cinema, can't you remember that I've told you I'm in too much pain. Most people are defensive by nature, especially if they are living stressful lives, so by phrasing something in terms of how you feel there's nothing for them to defend, it allows them to think and even to say sorry. So when someone is rude for example if you say "When you said that, I felt..." then can say "Sorry I didn't realise." But if you tell them they are rude they'll say "No I wasn't..." It's a simple, but effective tactic in some situations.

You are worried that talking to your MP may be futile. It may be, but sometimes you drop a pebble in a pond and the ripples go out and reflect back some time later with suprising results. Think more precisely what you mean for each of your asks and how you could go about achieving them. Perhaps it's something as simple as updated training for GPs, in which case consider what the route is to achieving that. What do you want research into exactly and are you sure it hasn't been done already? Who funds research - drug companies, the government? Who is best placed to lobby for those changes? I think some efforts are futile. I think the guy who swam in the Thames last year and messed up the boat race was wasting his time. To have influence you have to know what it is that you want, the options for creating change and how to influence those people who can make a difference. So there's lots you can direct your energy at. Maybe you could develop your set of questions into a proper survey with a student of psychology or a related subject and they could turn it into a dissertation? Maybe you could do an Open University module and develop it into a project yourself? Then you could share your results with people you want to influence.

You are not alone. There are millions of people in pain and as we get older most of us are carrying one problem or another. So manage your pain as best you can, pace your activities and seek out the company of those you make you happiest and don't judge them too hard for their lack of understanding. They say if you resent people (like a rubbish GP for example), it's like making a poison for them but then drinking it yourslef.

I do feel for you, I think I understand to a large extent what you are going through. I hope that you can find things that bring you some relief, things that improve your quality of life, ways to help you communicate and get the desired responses from other people, and positive ways to direct your energy towards changes that will help us all.

If you haven't tried it already, I'd really advocate the mindfulness training.

All the best