Health Organization for Pudendal Education

Having a really low night tonight.
Everything is making me angry or Im still in the anger part of the acceptence cycle. Either way Im frustrated. Im 29 & how in the world am I not to sit or bend. I can understand to limit my sitting, but bending! Urgh. EVery time I bend I have fear wash over me. Thinking "well you have just made it worse kate" How do you put socks on or take your pants off, remember you cant sit to take them off or bend for that matter. What about shaving your legs or cutting your toenails. Its ridiculous. Im thinking of just going crazy & bending & sitting all day long so I can make it worse so I will have to have surgery.....Oh but then thats not a certain fix either. And whos to say all my symptoms are due to PN only. I could have a wonderful mix of things that contribute to my useless body.
I havent even begun to see doctors who might be able to help. It takes forever to get into anyone & even then Il have to tell them about everything I have read, like nerve blocks making it worse, MRI's not picking up on PN & all the other stuff in the hope they wont give up on me.
Im sick of laying on my stomach my tummy hurts & my jaw is saw. I have overwhelming feelings of depression. My parents have been great but they do not understand what im going to be in for & in years time Im sure them & my friends will be over hearing about what im going through.
I feel like I have to check online everyday just in case i find the cure on this website. like its going to be that easy, I copy & paste certain things that have happened to other people to show the doctors when i get in to see them, so they know what other people have gone through & so to hopefully avoid the same complications. But I have my own road to travel.
Im meant to go back to work soon, and i want to, I want to leave all this stuff behind & just be better. How am I going to work without making it worse. In fact how am I going to live out the rest of my life without making it worse. I dont want to be on medications forever, but if I have to I will.
And then theres the look into the future, if I dont get this fixed & just live with it day in day out, who would want to marry me let alone be my friend. No love life either as that would be to painful. So I work one day then have the next day off only to lie on my tummy so Im not in pain. what a great life
It seems like this is one cruel joke. There are many sickness's in the world & many people going through worse then me, But theres also people going through better than me, & I wish so bad that I was back to my old self.
The thing with PN is the lack of knowledge about it, thats what scares me. If I had something that was horrible but felt empowered after I saw a doctor that knew what he was talikng about & was ready to start to beat this thing with me then I think I would have hope. But I dont...I dont have any hope at all, and thats what scares me the most......that & the living with this forever thing.
If you are new to the forum, ignore this post all together. I do have good days, this just isnt one of them & I have no one I can share this stuff with who knows what Im going through.

Wishing everyone better days then mine
Kate

I could have typed that posts almost word for word.
Its so cruel, but not funny at all.
you are not alone,
HUGS

You brought tears to my eyes Kate. I am really good at ignoring the points you raised but I am older than you and it's not funny, not one bit! (((hugs)))
Things are improving all of the time of course, but because everyone is individual one persons breakthough may not be someone else's. Similarly, one person's problems are not universal either so some days things can seem worse than they are, especially if empathic. Empathy is such a noble characteristic but it can sometimes have an adverse effect (I have just HAD to eat a bar of chocolate for instance after reading your post ) As you say 'you have your own road to travel, but with us.
There is a lot to be said for CAB (oops wrong again. . . taxi for helen, edited later) although I only think I understand the principals tbh, or may be this mindfulness people are talking about? ? I don't ever propose that mind over matter is a cure but it helps in some ways and little bits of help do add up.
I would imagine you are quite weary of returning to work, it's a conundrum isn't it. You so want to be 'normal' but wonder what a life it is having to rest up to allow yourself another working day. . .are you able to go back part time?
I know that everyone here will empathise with every word you have written, I wish I had a more comforting message for you, but honestly things will improve. Try and focus on your good days (easier said than done I know) and sometimes do, do things, within reason, (or not) that ok, may bring on pain, but make sure it's a good trade off, and enough to make you smile, maybe more inwardly, through it.
Doubt I have helped much but I do send you my best wishes and more (((hugs))) Let us all know how you get on.
Take care,
Helen

Kate,
We are with you! So sorry you are struggling. It appears Sunil mentioned a doctor in your area that knows about PN and should be a good start to figure out how to help you. That would be good to get him to determine what is going on. I see you are on some medicines but may need more to take the heavy burden off you about all the future so you can just focus on today and determining a path forward. That helped me early on. I did not realize how overwhelmed I was until I started taking Gabapentin and the antidepressant portion kicked in. I am post surgery now but still worry some about the future but taking it one day at a time. I wish you better days ahead.
Janet

Kate, I think it can be discouraging to read the forum because many of the people here are still looking for answers. I remember when I was at a low like you are and thinking I would have to live like that the rest of my life but please stay strong and fight because there are many of us who improve dramatically and get our lives back. You still have many options.

Hugs,

Violet

Thanks everyone

Ive brought a journel & I think best when Im feeling as low as I was the other day I should first write in my journel before posting on here. Its not fair on everyone else to read that as I know myself it can bring you down when you read someone elses sad post. You can sometimes walk away a little heavier, or sader, feeling like you have taken on their problems as well as your own.

Thank you again everyone, It helps knowing that there a people out there that although will remain faceless & who Il never meet, they can always give you a that extra burst of determination to continue along this journey.

Kate

Kate I can't agree. I honestly think that my therapy is trying to help other people. I may not be much good but the communication does us all good (I hope)
If anyone is asking for any help at all, that is a positive action rather than a negative one. Then when the response from any answers is positive (even slightly) its a worthwhile exercise all round.
Everyone will feel hopeless from time to time, non of us are super human and this is a tough thing made tougher by a lack of recognition and scarcity of clinicians who are PN aware, often lengthy time scale for treatment and frequent misdiagnoses. So things are a little stacked up against us.
Throughout my journey I have found hope to be the most understanding and fantastically helpful community. I didn't think I would 'fit in' altogether as I consider that my piriformis syndrome is the most problematic, maybe 60/40, PS/PN but I am constantly amazed at the wealth of goodness here. I can't call it anything else, so I thought I'd stay
I think a diary is a good idea, may be good therapy. I am too lazy, although now that I think about it I might be so zealous now (PN/PS warrior ) that I would become obsessed and drive myself nuts, not to mention my husband. See you guy's are saving me from insanity too.