tired of feeling like a leper

[mich2604]

I guess this is a bit of a vent, and im sorry if this is in the wrong place.

I had my appt today with the uro office :-( she said the creams arent working.............and wants me to try the hot pepper cream :-(

I was doing better before my period hit me :-(

I really still feel i have an infection of some sort too.....

Im at my wits end, and even thought about going to a bar and just drinking.

she wanted to do an exam today and I said no because i have an appt tomorrow and i dont want to flare. She never told me i had to be examed EVERy appt :-( She came down on me hard too, about coaxing me and convincing me to get an exam (she never ever had to do this ever) and cant spend 45 min doing this......(today i waited for 45min to see her)......

I asked her about PT since she said we would discuss today, 3 min discussion her handing me the script.......so i asked her if it would help with my VV and she said that it would......Im not really sure why I was just given this script now after a year of suffering. (i guess this is more PFD related)

I just feel like there is no way out of this for me, meds arent working, creams are hit and miss, and now i will have to use the hot pepper cream. (maybe i should just go eat some thai and let that burn me naturally)

sorry if this is a downer, i just dont know what I should do next.

[Roxie2007]

HI! I just read your post and feel so for you! I've been there SO many times with dealing with IC and urethral pain and other ailments I have. Dealing with doctors alone can drive you nuts! But when you have severe pain and then have to wait around and not get proper care.......that's a whole other story!
I don't think anyone who doesn't have IC or a major health problem would understand all we go through on a daily basis! There's days when it's all I can do to drag myself to the car for my long drive to work and then work all day and then drive back home.
So please don't think you are in this alone.......I'll be thinking of you! Roxie

[mich2604]

thanks roxie, ive been holding back tears all nite......

my one friend says it sounds like the NP doesnt believe me (maybe that is it)

I just dont know what I did wrong, i mean ive tried all the treatments they have given me........i really have.

i really dunno what Im going to do :-(

going to get my boxy box of tissues.

[ihurttoo]

I am so sorry that you have had such a rough day. From reading your post, it sounds as though you have lost faith in your Dr. and her NP. If this is the case, it may be time to find a new one with a fresh perspective. If nothing else, it might be worthwhile just to get a 2nd opinion.

I think the experiance you have had pretty well describes my own frustration with various Drs. I get extremely frustrated with how slowly things move. You go in and tell them what's wrong, they prescribe something and make an appt months later. Meanwhile, it doesn't work, and we are left suffering. I hate that!! I finally have 2 Drs that will schedule me 2 weeks from when they prescribe something to discuss how it worked to see if we need to change the dose or switch to something else. I realize that there are some meds that this wouldnt work for. And obviously, this wouldnt work for things like PT, so we adjust accordingly for things like that. Let me tell ya, it is a relief to do business this way. But, unfortunately, they are only 2 of my 5 Drs. **sigh** I just wish I could get them all to do that!!!

So, I DO feel for you! I hope that you find something that works for you soon.
Unfortunately, I never found anything for the VV, so ultimately, I had a vulvar vestibulectomy. It worked wonders for me. I no longer have any VV symptoms. I still have occasional vulvadynia flares, but it is usually when I am having and IC flare.

I hope that you find something that works for you very soon!

Hugs,
Amy

[SandyRN]

What hot pepper cream? Is she talking about Capzacin? What are you supposed to do with it? If that's what she means, please be careful with that stuff. I had Shingles and my doctor told me to put it on them, it literally burned the skin off my back. I guess I'm sensitive to it, but it's made with HOT peppers. I guess this is a tx I've never read about before, but it sounds, well, crazy!

[mich2604]

Thanks again,

I am going to look for a 2nd opinion, but Im not sure anyonelse in my area is as good as the Dr office I go too(speaking from reputation, not how i was treated) I am going to look into it though, if only to go for an evaluation and in hopes to be treated like a human being for once.
I have Lyme disease and very high cortisol levels, which I dont think the VV can resolve with both of these issues not being treated.

And one of the meds I am on causes me pain when i pee in the morning, i guess cause it knocks me out so much during the nite, i dont wake to pee....so now im in a bladder flare.......i never had this problem before my hydro/cysto, only after, never had much bladder pain before it. I bled horribly after.

Yes the peper cream is the capsasin, supposedly they will cut it down to see how i tolerate it, right now my VV only hurts with exams and to touch....it used to hurt 24/7 to the point i had to stand and couldnt sit, so i guess im not going to be 'complient' to this treatment.

[SandyRN]

If it works for you then great! I was told to use the over the counter stuff and I guess I had a terrible reaction to it. It seems drastic to me considering the pain it put me in, plus temporary red scarring on my back and hips....but that is probably just me. I see commercials for the stuff all the time and others are able to use it. I just sit and scratch my head wondering how they use it?

I probably don't know the specifics of the cream...is it the over the counter stuff and you just put it on your vulva?

[sami4]

Mich

I notice you are from the PA area? There should be several good IC and VV people in your area. Is there not a Womans Hospital, I forget the correct name but I have seen some cutting edge research out that group.
I would look around for a new set of care givers, these dont sound too sharp to me.
Sammi

[mich2604]

Thanks Sami- the one you mention is the one i go too i think.

Im looking at other options.

Today I had a pleasant appt with my new gyno....he is great, so nice and listens, i wasnt rushed and he was busy and his staff wasnt stressed at all. Im not sure if he treats VV and IC though as he was referred by the uro NP office, i will ask at my next appt.
I left the office with a smile, which i soooo needed after yesterday.