How do you deal with this?

[GriffsMommy]

I know not as many people have pudendal nerve issues as some of the other related conditions to IC so this board probably won't get used as much as some of the others.

I just don't know how people do it. My pudendals have been killing me so much that I can't sit up at all today. I have either been sitting on my hip or laying down. Of course to see the tv in bed I have to lay on my right hip and if I'm on it too long then that starts to hurt as well. It is enough to drive me crazy!

I get the pudendal nerve blocks once a week and they do help a little bit for the first 24 hours and then after that I'm right back to where I was before. I don't think it helps matters that I have to sit in the car for 3 hours round trip to get to the dr who does the blocks. The nurse asked me if I wanted to come every two weeks to lower my stress level. I said that if I do that then my pain just gets so much worse and then when I get the one after two weeks it doesn't help it just makes things worse and more painful and then I would have to wait for the nerve block a week later before I start feeling any level of relief again.

I just feel so frustrated! It's not enough that my whole pelvic and lower back region hurt almost all day non-stop but now my pudendals almost seem to be getting worse. Soon I feel like I won't be able to sit on my butt at all. As I'm sure most of us say to oursevles often, I just wish I was "normal" and didn't have to deal with all of this stuff.

Thanks for letting me vent to anyone else on the boards who has experience with this.

[lisabar36]

Oh Christine, I am so sorry, I know this has been really bothering you. I know the neurontin was supposed to help, and its not. I know you said some found relief from that with lyrica, I think thats for sure something to discuss with the doc and I know you did and he does not want to switch you, so maybe once you see a rheumo you can try it and maybe that will help. I don't have the pudendal nerve issues, but I know it helps me with nerve issues already. Don't feel bad, he didn't want to give it to me either, he said to see a rheumo. But yet it is on his list of treatments and Sandy said for me to go in and talk about switching it, well I went in and it was a wasted visit cause he said see a rheumo. :confused:

[BrittanysDance]

Christine,

I'm sure you've read so much about PNE already and what you're doctor has provided and told you, however have you been to www.tipna.org and looked under the FAQ section and read there? They have SUCH a wonderful section there from the worlds expert on PNE on what to do and what not to do, what methods to try, and other items of interest that may help you and your doctor. I know your doctor is very highly respected and knowledgeable, but it never hurts for the patient to be informed and up to date either :).

Hugs,
Brittany

[GriffsMommy]

Thanks for the support Lisa, you are always there for me. I do want to try the Lyrica but it seems like I'll have to wait until after my surgery for that.

Brittany,
Thank you so much for the link, I was unaware that you suffer from PNE as well. I will def take a look at the website. It was just really bad yesterday and it got me really upset. I didn't do anything yesterday but rest since the older kids were off school and could watch Griff and my pudendals were still killing me. I also seem to always sit on my right hip instead of left for some reason, just feels more natural to me so then that starts hurting from sitting or laying on it so much.

[BrittanysDance]

You're welcome sweetie - yes, I do have PNE but not as bad as you do. I have had the injections fluroscopically and they didnt help, actually hurt me more than before, so we didnt continue. I mainly just am very very careful as to how I sit and whatnot, moreso do the PT side of it. It is awful and I feel horrible for you that you're suffering so terribly :(. Funny - I sit on my left vs. my right - but I always go numb and then get shooting pains, ugh.

I hope the website can help you at least a little bit - like I said I know your doctor is a WONDERFUL man and is very knowledable but I thought maybe the site would have some tips or suggestions for you and possibly your doctor that maybe either of you hadn't thought of :confused: I dont know.

Hugs
Brittany

[Dolphjoy]

Hi..

I have great difficulty in this area as well, I think it's worse than my IC.

The only treatments I've tried for this are nerve blocks under twilight sedation (which always knocks me out) with trigger point injections and nerve blocks with steroids. I've also been working with a pelvic PT therapist. She has to stretch my nerves (with pain and lots of Lidocaine Ointment), do her stuff, and then "undo" me in a sense.

I am hoping my next step is use of Botox, but I'm waiting to hear from the doc.

Have no idea if this helps, but at least we can commiserate....anytime, k?

Stephanie

[kjd]

Hi Christine,

I am so sorry you are finding it so hard. Like you I suffer with PNE and my pain is pretty much in my hips, clitoris, vulva, thighs and bottem and it feels like someone sticking a knife in me.

I work in a office sat down so find it very difficult and walk around alot and I have a car journey there and back aswell which is fun!!! to be honest with you I dont cope very well at all, I am a complete wreck at times and have a lot of tears and confidence issues. The only thing that keeps me going to speaking with the ladies on here to give me support without then I think I would be in a very dark place x

[GriffsMommy]

Stephanie,
I get the nerve blocks once a week at this point but my dr doesn't do it the way you have yours done. I am fully awake and he just pushes on the nerve until he finds the right spot by me telling him and then he does the injection of lidocaine and steriod on each side. It hurts like hell when he does it but it only lasts a minute.

KJD,
I'm so sorry that you're having such a rough time as well. I find it almost impossible to sit straight up at all anymore except when I'm in the car and that's because I don't have a choice and I use the seat cushion from the ICN. Sitting hurts me right at the nerve ending where I get my shot and causes stabbing pains into other areas as well. That's one of the reasons that I applied for SSD because how in the heck can I work when I have to sit and talk on the phone all day when it hurts too much to sit and I'm constantly up to stop the pain from sitting or to go to the bathroom. Obviously I did not have the best stats at my job when I left on short term disability.