Health Organization for Pudendal Education

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.

Stratts,
It certainly is hard to convey to others something they have never heard about and nothing to really compare it to so they can understand. I have been extremely fortunate in most friends, family and co-workers g.et enough of this based on limited info. I did send some to this site and that was an eye opener. I have already gone through chronic foot pain (20+ years) and when I first got married to let my husband understand I just initiated the extreme pain and then of course others have experinced me in it or the shooting nerve pain and then it was very clear. My husband thought me just explaining would have been enough but I thought the real stuuf was needed. With adding PNE I now have limited sitting and standing so when people hear that they kinda realize I only have lying down left and leaves them speechless. I cannot imagine forcing myself to the higher pain to show anyone the PNE pain so I just try to explain that it is the pelvic nerve and affects the sitting, bending, lift and twist, etc. As for your list I am getting better since surgery but still motivation, mood and mental state are down. I was honestly already sick of the chronic pain before PNE hit and as my friend said there just is not enough anti depressants to fix it, but as it turned out the gabapentin helped. So long as I keep getting better I may be okay but have to keep reminding myself I am doing better than others. #6 doing small chores is clearly frustrating as even with the foot pain at least most of the time I could wash the inside windshield of my car and change a lightbulb but now lifting groceries is a struggle and I split that by going more places but getting in and out of the car threw my pelvic alignment. I was already limited and pay for maid service due to the foot pain and exercising was never something I did, just watch what I eat to keep weight down but no cardio and muscles pretty much atrophy. Something happens to my hubby and even though I can work would mean an apartment or probably assisted living fo,r me. Socialising is slow but I was only doing lunches and some other minor stuff and that is working with just getting up every 15 min or so. Concentration and focus are tough especially with the gabapentin taking away my attention to detail otherwise I guess I have learned to work with some pain the really bad stuff means a day off.

Continued my Nook is making it hard to edit the other entry. I am just gaining some travelling shrt 2hour away drve by putiing the passenger seatback down and lying almost flat. Driving still tricky so no longer than 1/2 hour (work, stores, hairdresser). Oh yes work has been terrific and allows me to get up amd walk around every 15 min as needed. They seem to like my work and say I do more than others who have no let alone 2 chronic conditions. Again I am very lucky there and my hubby because I honestly do not remember the last year (2009 or 2006?). He does not want to hurt me and all focus is on getting me better and able to do anything for enjoyment. Our vacation memorial day to Delaware and PA at a nice inn and some meals out, Longwood Gardens, etc was a real treat. Kind of a 20 year anniv trip as February I was not able to do anything and really unable last Feb when we were expecting to go to Disney. Beefore surgery I mostly focused on getting treatment which kept me going now the recovery but hard figure out the last of things I hope to be able or continue to try and find workarounds. Accepting the changes and finding ways to have a life and enjoy I am still trying to work on. Oddly I had it "easy" to compensate for not being able to walk or stand for long- I sat. Now I can not go back the other way to make up for not being able to sit so what do we do? I got a Roho custom cushion that helps and just still thinking and rearranged my kithcen to move heavier pots and pans so I do not pick up from bottom shelf. Maybe just showing your list without descriptions would give impact but honestly even having this condition I think without having been through this I could truly fathom the impacts we have. This is a very comprehensive condition. My brother had a stroke that severely impacted him which may be close in some ways but them he has also lost stamina from chemo and had open heart surgery and he said the chemo was the worst pain ever and he is a tough strong guy so I think he may understand best. I hope we can provide some help y,to you and I hope you find some treatment to get better and the pain is not so bad. Take Care,
Janet

Hi Stratts,
My list would be all of your above laced with a whole lump of negativity, hopelesness and brick walls. I can't, they won't, don't believe, you shouldn't, that won't happen no, no, NO!!!. . . . making life more difficult than it already is.
I hope your MP shows some interest. I think that PN is about to be included in the NHS website (I know Judy Birch has had some input there) so hopefully there will be more recognition and justification (if that is the right word to use) which will help, otherwise we will continue to be malingerers and/or mad. (I'm going for mad )
Personally I am just climbing out of the 'misery pit' as I don't really want to be defined by this anymore. I think it did for a long time and when most of your waking hours are taken up with the pain and subsequent self pity (me, that is) it simply makes things worse.
I want the PN and PS word to be spread, more than anything else and look forward to that day.Then we may have a better understanding , a system for treatment that is part of the health service even, WOW think of that . Every time I read a totally sensible, logical article on pelvic nerve entrapment, I wonder why on earth it is so hard for those who should know to take it all on board.
I still don't want my friends or anyone to look at me with pity wondering if my vagina is an fire though We all know that this is only one part of it, but I've come to realise that I am not going to justify my problem without a degree of pity from others and a degree of embarrassment on my part.
Thinking about this in more depth I think the reason these questions are asked and answered is because there is such a lack of understanding and there is a desperate need on our part to justify our painful situation. Hopefully in the not too distant future people will be more aware. I do applaud your efforts, let us know what your MP says.
Take care,
Helen

Hi I agree with your whole list including being unable to work. Close family and a few close friends are great and interested in the condition. The rest get on with their own lives, not interested or oblivious to the misery and disability of chronic pain. I try to educate folk but most people aren't interested unless it effects them.

You look well! How is you back! You must fight it! You have just got to be positive! All useful comments people say NOT,, I'm sure others on here have a list of these!!

Fatigue, depression, bitterness towards others, feeling let down, loss of dependence ie driving the list is endless. I became focused night & day on the pain. This site helped has me enormously.

I agree with Helen, how people/professionals can't grasp a basic concept of a nerve being trapped and squeezed when sitting staggers me, especially when the evidence is there. That really irritates me!

Good luck to Judy on getting PN listed on the NHS website!

Good luck with the MP, I am sceptical of them personally but you may be lucky.

I have managed with much effort & help to learn to manage it rather than it manage me. I struggle everyday but try to remain optimistic that my pain will eventually be reduced sufficiently that I am able to return to some normality. There is hope and help, it can be difficult however to find either sometimes. Don't give up! Good luck.

Lex

sunil wrote: Most people are normal and we just do not fit in. But I know I have to change to be normal and fit in, get to be a lot more aware if I have any chance to share my life. It's breaking the cycle and learning how to live and enjoy what I have.

What is "normal"? We are not all made from the same cookie cutter, but we are all unique. I think you are right when you said it's about learning how to live and enjoy what we have. I have a feeling that if we could trade spots with a "normal" person for a while, we'd find out that their life isn't perfect either. I think everybody has struggles that we don't always see. It's just not worth comparing ourselves to others.

You are so right acw, how does anyone truly know what others have to deal with.
I can remember a time when life was a breeze, at least many of us do have that reference point to aim towards when things do improve. Some may not have even that.
Take care,
Helen

This has completely changed my life.

Everything I have built up and created in the last 40 years I have lost.
I am an artist, my whole personality and way of expressing myself is creative, both in the way I think, and the way I present myself.
With the chronic pain, the creativity is gone.

I have no idea who i am anymore, what to say to people, how to communicate.
My lifes purpose has been stripped away.
All the plans, schemes and projects i ever had and still have are pretty much impossible to execute now.
If i do get an inspiration, and forget in that moment that I can't follow up, its a big crash back to earth when reality catches up with me.
I can't commit to anything for anyone, because i would just let them down. My heart is in it though, and I just feel completely useless.
I so wish i could

Even growing my own vegetables, cooking my 'masterchef' dishes ( Its now toast or throw a potato in the oven and grate cheese over it sort of thing).
I have to leave all dishes to hubby, housework etc.
He drives me, I can't jump in the car and go to the beach even to get the fresh air.
I miss surfing is the hardest thing, from 3 hour sessions up to 5 times a week, to nothing, I cry when my hubby goes out for a surf and i can't even get to the car to watch him from the shore.

I can't exercise, keep in shape, everything i try ends in pain flares. Up till this started I was a naturally petite person 50kg with a great figure even after my 3 kids, now 70kg and no muscle tone. Thats hard for self image. My hair is falling out, i used to have a massive head of curly thick hair, now its a dry straggly hay bale. People do try and say "you look well' but not so much anymore, because i look like shit.

I have no social life now, I have just one friend now who thankfully rings me once a week, and visits maybe once a month. Everyone else has ditched me. It makes me think that they were only interested in me because of what I did (especially with the surf photography, so they got photos of themselves on my blog and in surf mags, and the videos i filmed and produced, also shots for their sponsors etc) i feel I was used, and that I was only ever in 'the circle' because of what they could get from me, and not for who I was.. this makes me think that perhaps i was not really likeable, and how/who I thought I was, was not desirable anyway, so I just doubt everything about who I was then and who I am now.

The most humiliating thing is I can't work, I have no income, and with that no freedom. I feel like I have no authority to make decisions, to ask for anything. I feel like I am on house arrest. I can't even paint from home because i can't sit, or stand for any length of time needed. I can do a small canvas like 6x8 inch semi lying back, but its very awkward. I think its just not worth it.
Hubby only earns enough to pay the bills and my medical costs (which are alternative therapies) he is a great support, I am so blessed there.
But I cannot make love to him, and he wont touch me because he doesn't want to hurt me.

I have three adult kids, 19, 22 &25, all living here now again. But they do nothing to help me out apart from expecting me to still bail them out and do things for them. When I do ask for help they are too busy in their own lives and own dramas. they look at me and seem to think that there is nothing wrong with me.
My middle daughter moved back to here last month from living 5 hours away for the last 5 years because she finally realised what i was going through, but now she is here, she has done nothing to help me, instead i am looking after her 5 guinea pigs while she is looking for a house to rent, I have to plead with her to bring food for them and clean them out as i can't bend down to pick grass for them.
And I feel i have completely failed as a mother that I bought them up to have this attitude towards me, after all the sacrifices i made in my life to provide for them and support them in everything they did. I tried very hard to show my kids love caring and understanding, but I failed.

My two brothers and sister are all overseas and i never hear from them, we are not a close family. One thinks I am a drug addict and has disowned me, which really hurts.

It was kind of therapeutic to write this, sorry i woffled on.

Oh what hurts heaps is that the medical profession gives no support, I am not recognised as being disabled, even though i fit every category of having a disability.
I feel i am completely worthless, unworthy .. its cruel

I'M MORE NUMB THAN ANYTHING AT THE MOMENT
I am keeping on top of my feelings about this scenario, but petrified if the time comes that i can't go on.
I have had thoughts of it, about what point would come that would make me decide to give up.
I think it would be if hubby had enough and moved on.

sunil wrote: just know you are not alone we all care.
Sunil

That is so true Sunill, thanks for this. AND Know this Kia Kara.
Glad that writing your post has been cathartic and helpful. It was so well written too. I am going for an important medical next Tuesday and I am going to steal parts of it, well most of it tbh.It will help put me into the correct mindset and will read and re read it (thanks) instead of putting on my stupid 'brave face'.
I'm REALLY bad at telling it how it is and too good at the brave face, in case people think I am I am just a moaner. Your post was factual and succinct without a 'whinge' element, which is what I seem to be so scared about. I really can't abide true negativity in others or a self serving 'poor me' attitude. This means that I have done myself a huge disservice in the past by glossing over problems, when they are simple facts too.
HOWEVER, there are a couple of things that I would pick you up on.
Kids!!! until they have some family responsibility themselves they will never get what you have done for them, so never say it's the way you have brought them up. You didn't fail, they just don't have an inkling of what being a parent means. . . . .My husband is one of the most selfish people I know and I put that part of his personality down to never having had children (he's my second husband, I have 2 boy's) Luckily he does have other attributes , but he has only ever had himself to think about until he married me aged 41. I'm thinking of getting him a dog
It's got to be difficult when you had such an active, fun lifestyle and to have had it change so much. What about getting a pair of crutches that could support your weight and stand and watch him surf? Maybe impractical on the beach but is there any promenade, just to get some fresh air for a bit. I have some under armpit crutches and use them if I have to go out for any length of time and stand with them supporting myself. They are difficult to walk far with but Ok for short distances (and a good upper body workout) They 'fold' down too.
As you mentioned you have a wonderful man and a really good friend, try to think of those positives.Maybe the others don't realise how this problem is affecting you. We look normal!
I have to say that you do sound depressed (why wouldn't you) I remember for a long time I felt completely abandoned by the medical community and did get very down because of it. This is so very wrong when they are supposed to be a helpful, caring bunch. I'm still in the same situation in essence but I am being more pro active now, which does give me a little more hope to hang on to. Don't give up, as Sunil said we all care and will help all we can.
Helen x

Hi stratts
Intereasting to read your own and all the caring replays. I like many more of us have found the life changes limiting! As yes they are ! I still manage to hairdress from eleven thirty till five, but I'm tiered and ready for home!
House hold chores are not to bad if I avoid bending! As for sex? It is occasional rather than regular, my partner thinks the pain when having sex is pudendal pain when in actual fact it is more to do with menopores.
I do try to remain possative. Hard as it is at times! As for feeling"normal" at twenty five I had my colon removed and I had to get used to waring an appliance on my abdomin for life! Trust me if you can still remain "sexual" after that you can conquer many things! Good luck! Sometimes we have to get feisty to get things done
Anne