Treatment plan advice and many thanks for support

[carried_cub]

Hello all,

I haven't been on here for quite some time and wanted to post this both here and in the PN forum to see if anyone could sanity check what I'm up to.

First of all, thank you for the support I've received here in the past and for newly diagnosed patients please hang in there. One step at a time, one day at a time, work on your coping toolkit and finding medical care you're happy with.

It's over a month out from my cysto/hydro, which showed normal, but given historical symptoms I am having weekly Marcaine/heparin instills at my urogyn. (Some of them are not so long past...accidental lime juice is The Enemy.) This is for five weeks and then we move to whatever schedule we determine best controls my symptoms. I am supposed to hold it for ten minutes and then pee, which means no lidocaine on the catheter, which means I get some kind of bladder friendly treat afterwards. >-p We used a hydrophilic catheter last week and that was partially better. I plan to take some info on LoFric catheters in to my dr.

However, here is a new thing. I have complained about genital pain on here before, and given my cysto results was referred to pelvic floor PT for myofascial therapy. I saw my 1st PT for 4 appts and she is sending me to see another PT in a different office who is more knowledgeable about myofascial therapy and nerve glides. I am waiting for the order to transfer so I can set up an appt with the new PT. The first PT examined me and said my pelvic floor rest rate is about a 3, which is a bit high, and didn't find anything irregular about my hips being level, pelvis, etc. She did some gentle external massage our last appointment which helped other pain like low back a lot, and gave me gentle strengthening exercises and stretches to do (with reminders to stop if I thought it was irritating anything). She says that she believes at a minimum my pudendal nerve is at least part of the problem...so that's where I am now. I have had a variety of kinds and locations of pain "down there" but did ok last week--apparently I irritated something over the weekend and am struggling with a very achy, "bruised" feeling right on the sort of bony corners where one's cheeks separate, sort of behind the vaginal opening. I've started trying not to sit unless it's unavoidable, have my IC cushion, resume walking etc. At first it didn't bother me unless I sat, but now it's always there.

Anyway I'm nervous b/c I don't know what this new PT will know and I only have so many appts left for the calendar year. I am having to struggle to be patient...there is a PT an hour and a half from here listed on the pudendal websites and two of the doctors within the same flying time.

Any thoughts on how to proceed with seeking treatment or practical coping tips would be appreciated. Heat? Ice? Anything dumb I might be doing and not know it? Nobody's going to give me oral medication at the moment. My boyfriend says I'm being very brave but in my darker more frustrated moods (when he calls me Negatron) I feel like I haven't seen any information that there is in fact an effective treatment option. I say that with all respect to those of you who tough such things out every day...sometimes it's just hard to envision future potential success.

Anyway many thanks and feel free to PM me if necessary. Once again to those newly diagnosed, hang in there, hang in there, hang in there. I will also post this in the PN forum so if you start feeling deja vu don't worry...I just wanted to speak to both audiences.

I know Kara will probably see this and want to say you have all my hope that you will see improvement soon, and thank you for responding to a prior PM of mine while you were recovering.

[Kara29]

It sounds like you are doing a great job so far as to how to take care of yourself. If you see a PNE Specialist, make sure he/she communicates with the PT about how to treat you without damaging the PN further, if in fact they determine that is what you have. Communication is KEY between all of your Doctors so that they can maximize the help you should be getting and that they are all on the same page.

I use ICE and in my experience, it HELPS TREMENDOUSLY but it's not for everyone.

The Video is on this page of how I make my ice packs.
http://www.ic-network.com/forum/showthread.php?t=53206

Keep on fighting, you are doing great, I am so proud of you for the progress you have already made!!!!!!

Again if you need anything you can always PM me and we can chat.

I hope the ice is helpful to you, I use it between my legs and they have the correct curve for the body down there if you know what I mean, they fit like a puzzle piece and have been vital to my healing.

As far as my own operation with PNE, I really only notice that I can sit much longer than before. My Doc told me last week that that was incredible with the amount of nerve damage I had in there, over 15 years of entrapment.

I would do it again and I hope for even better results as time goes by.


Warm Hugs and Well Wishes,

Kara

[carried_cub]

Kara, thank you for your support again. I will continue to wish only the best of results for you. I think the improvement you have seen is a good sign; please just take care of yourself!

The new PT I saw is filling in for the one I was supposed to see, who will not return fr vacation for a couple weeks. She found some misalignment/rotation of my pelvis and tailbone and of course a lot of muscle tightness and soreness. But neither of them is a pelvic pain specialist and she at least is not familiar with pudendal pain (whatever the cause), though she said she'd do some research--I can't speak for the lady I'll see once she returns from vacation. So...sigh. Everything all at once the last few days, an instill with a cath gone wrong, my period which is the worst time, PT. I had a big pain uptick yesterday, which is unimpressive to many I know, but upset me a lot.

I have a couple questions; I'll be glad to PM you instead if you want to talk there, but I thought I'd see if anyone here had input:

-- how do you know when it's time to see another specialist? I like my IC doctor but he doesn't seem to treat other pelvic pain issues. I wonder if I went ahead and hunted down yet another doctor we might get a handle on some more symptoms.
-- when do the bells in your head go off to recognize Bad PT?

:-> hang in there...I use ice too, but I use it on my lower back or low abdomen. I found out if I actually let it touch between my legs, even insulated, I get rebound pain/irritation.

[Kara29]

I think it's time to get a new Doc when they like you said, don't know a thing about PN or PNE. The numbers of Docs testing and treating it are growing, so I hope you find one in your area that can help. If you need help, PM me and I will try to find someone near you who may be better qualified with PNE. You could also ask your Doctors and PT's if they know of where to send you. A good Doc will not let you go until they have found someone else for you to go to. It's not fair that we have to do all the work for ourselves but sometimes it comes down to that.

I'm thinking of you and sending well wishes and some answers your way! :hi:

Kara