Some new hope!

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Some new hope!

Postby Parster » Sun Jul 09, 2017 8:16 pm

Wow, what a great forum. I wish I've found it earlier, cause I see there's lots of knowledge, personal stories, tips & tricks, and good spirit here!

I'm a male, 38 years of age, and I've had problems for at least 6 years now. I'd say at least the last 2 has been pure hell. I really don't know the cause - it may come from my bad lower back, or too much sitting in bad positions, or maybe from running or lifting too heavily at the gym. I really don't know. I've met numerous doctors and physical therapists, but in Sweden where I live the knowledge about these conditions is bad, to say the least. When we've ruled out stuff like cancer in the balls & prostate, epididymitis, bacterial infections etc, my local doctor just hands me pills (gabapentin right now) and says it's a "chronic pain in the abdomen" and that I have to learn to live with it.

Mostly my scrotum and perineum hurt (the right side is the worst), but my penis and anus gives me trouble too, just like my coccyx (I think that's the word) and lower back in general (don't know if that's related). So, I can't sit without getting crazy and I can't lie down to sleep at night for more than like 1 hours in a row on a good night. I'm even in some pain wearing pants. Sex is out of the question and I've slowly but steadily turned away from friends and family since I haven't got the strength to hang out with them, and I don't feel no joy doing it anymore either. I'm getting more and more alone - and since I haven't got a wife, girlfriend, or kids, it's just me (which is good in some ways, and also not so good I guess).

I have trouble managing my work - cause sitting gives me so much pain, I'm worn out from not sleeping, I'm depressed (yes, I've have recurring suicide thoughts), and the pills I take for some pain relief gives me a really hard time concentrating. The good thing there though is that my boss (so far) is really understanding and cuts me some slack, but I've got a feeling that won't last forever since I really doesn't do a decent job there anymore.

Anyway - this forum really got me hoping for solutions, I look forward to reading a lot here. Maybe trying out some things you guys have tried already, and perhaps even seeking help from some doctor abroad cause like I mentioned, in Sweden it really seems hopeless to get help with a situation like my own.

That's my story so far. I wish you all the best! :)
Parster
 
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Re: Some new hope!

Postby Violet M » Mon Jul 10, 2017 4:01 am

Hello Parster,

Welcome to the forum. I hope you will find some valuable information here.

I wish I knew some providers in Sweden I could refer you to but I don't know anyone and I don't see anyone on our lists. http://www.pudendalhope.info/node/60 http://www.pudendalhope.info/node/57

Maybe you could try calling some of the European PT's and see if they know someone good in Sweden. Sometimes they attend the same conferences and know each other. Otherwise I guess you will have to travel like so many of us have.

There are a lot of options for people with pudendal neuralgia and it can be difficult deciding on what to do. I wish you all the best as you figure this out.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Some new hope!

Postby April » Tue Jul 11, 2017 12:18 am

Hi Parster,

That sounds difficult. I have two medication ideas. First, there is a slow release version of gabapentin called Gralise that you could try. It's more expensive than gabapentin, but it may reduce the issues you've had with focusing, because you don't a big hit of the medication at once. I take 600 mg of this every morning, and I don't have problems focusing at work. In the U.S., many pharmacies give you e-coupons for Gralise, which makes it less expensive, so if you do start on this, ask about the e-coupons. I think you can also find these coupons on-line. Second, you might ask your doctor about either nortriptyline or amitriptyline. Both are supposed to help with nerve pain, but they also function as a sleep aid. Right now I take 50 mg of nortriptyline in the evening, and I think it helps with nerve pain, and I know it helps me stay asleep for longer spells.

April
April
 
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Re: Some new hope!

Postby Parster » Tue Jul 11, 2017 5:57 am

Thanks to both of you for kind advice! :)

Violet M: As for seeing a doctor, I have asked my local doctor again now and we agreed that I should try another round with the urologists. I hope to get an appointment in a couple of months... We'll see after that what they suggest for me to do. In the meantime, my strategy is to avoid sitting down as much as I possibly can. I also try keeping the pain down with TENS for my back, and as for exercise I guess walking is all I'll do for now, as long as it feels as bad as now.

April: Thanks, I tried to search for Gralise but I can't find it as an approved drug in Sweden (yet?). I've tried amitriptyline before before and didn't think it helped me so much, I also had lots of side effects. My problems were also smaller at that time. I also experience bad side effects with gabapentin, so it's hard to know what to use. I've also tried Cymbalta, I think it's called duloxetin too. The advantages with Cymbalta and amitriptyline is that I guess they might cheer me up a little, at least more than gabapentin does. So I'm open for changing my medication but maybe not right now, it also takes time to scale down my gabapentin dose and I'm kind of afraid for even greater pain.
My doctor also tells me that these 3 meds is all there is that she can prescribe for my pain. That seems strange. I also use sleeping pills from time to time though. But as I'm being told they are habit-forming (Imovane) so I try to just take it once a week. And I guess I don't sleep so well from them anyway.

I also think that part of my problem with focusing at work is that I'm both worried and resigned, I have a hard time thinking about work stuff. About work, I'll try to talk to my boss this week about maybe working more from home the coming autumn. It's easier to stand all day then - avoiding some meetings and also lunch breaks, coffee breaks etc where it's "strange behavior" not to sit down. I'm not comfortable with sharing my problems with my colleagues (yet?). I do tell them I have back issues though.
I'll have to wait and see what my boss thinks, though. It's hard to do my work if not participating full-on at the office.

Thanks again for commenting and trying to help me! :)
Parster
 
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Re: Some new hope!

Postby Violet M » Tue Jul 11, 2017 6:06 am

There is a lot of trial and error when you are trying to figure out the medications that work the best but in the end, I see medications as a way to help you get through the difficult time until you can figure out the underlying problem and fix it so you don't have to be on medications. That's what I hope you can figure out, Parster. I think the sleeping medication is really important though because you get so exhausted if you aren't able to sleep. For me that was one of the most difficult things about PN -- and also not being able to sit. I was able to get a lying down set up for my computer. It wasn't perfect but it allowed me to get distracted from the pain a bit if I could work on my computer while lying down. I remember I took a class and I took a cot to lie down on during class. I don't know if you would be able to lie down at the office. It's kind of humiliating I guess.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Some new hope!

Postby Parster » Tue Jul 11, 2017 7:15 am

Violet M: I have a decent amount of pain lying down too so it's not a good option for me, at least not for longer periods of time (that's one of the reasons why I have so much trouble sleeping). And as you mention, it would be a strange/humiliating position at the office, I would have a hard time coping with that.

Standing is the best position I can figure out, and every now and then resting my back and hips a little in a squatting position. Standing is hard when you're feeling tired though, you just wanna sit down and even though you know it hurts.
But yes, when working from home I sometimes lie down anyway to rest for a while or even try to take a nap. I haven't tried working at my computer while lying down but maybe I should. I have trouble lying down at my back though, but maybe lying at my stomach would work for shorter periods of time with my computer positioned a little lower. I'll try it.

You have a wise way of looking at medications, I think. I agree. And if I in the future would be able to reduce my pain to a level when I can cope with it without medications, it would feel like a dream. I still feel hope :) (at least today) :roll:
Parster
 
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Re: Some new hope!

Postby Violet M » Wed Jul 12, 2017 4:59 am

One of my friends lies on her stomach and puts the computer on the floor in front of her. You would have to have the right kind of cot or lounge chair I think.

When you go to your urology appointments, maybe you can print out some information from the pudendalhope.org website for your doctor.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
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