Feeling desperate/23 days until diagnosis block

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waterfall
Posts: 13
Joined: Sun Jul 17, 2016 3:21 am
Location: Baltimore, Maryland USA

Feeling desperate/23 days until diagnosis block

Post by waterfall »

I have 23 days until they do a diagnostic block in an OR. I don't know how I am going to make it that long. I can't walk very far at all before the burning across my sacral and other areas take over and I can't move on.

I really am feeling completely desperate and don't know how to cope.

I'm afraid the lidocaine diagnosis block won't work too.. and then what?
waterfall
44 yr old female
endo, IC, PN
Baltimore, Maryland US
Patty
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Re: Feeling desperate/23 days until diagnosis block

Post by Patty »

You need to see your family doc and get some pain medications. Elavil, Cymbalta,Gabapentin, flexeril. Something to take the edge off. Evan narcotics if need be. You need to know the blocks are only temporary at best sorry to say.
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waterfall
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Location: Baltimore, Maryland USA

Re: Feeling desperate/23 days until diagnosis block

Post by waterfall »

Thanks so much for responding, Patty.

I do have some narcotic pain meds here, along with the suppositories, and lidocaine gel. I think I'm just hitting that limit of pain despite . I don't know how to handle it. I know the blocks are only temporary, but I appreciate the reminder that I need to keep my expectations reasonable.

I don't know what to do.
waterfall
44 yr old female
endo, IC, PN
Baltimore, Maryland US
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Violet M
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Re: Feeling desperate/23 days until diagnosis block

Post by Violet M »

Are you saying that you are using the narcotics and they are not helping?

I know it's hard to get used to the idea of taking meds and the side effects can be annoying but meds really can help you get through this diagnostic time while you are still seeking a more permanent solution. And if the ones you have aren't working you can let your doctor know and hopefully they will work with you to find something that is more effective for you.

Don't forget heat and ice can be very helpful too. Ice gel packs are great because you can stick them inside your clothing and wear them around the house.

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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waterfall
Posts: 13
Joined: Sun Jul 17, 2016 3:21 am
Location: Baltimore, Maryland USA

Re: Feeling desperate/23 days until diagnosis block

Post by waterfall »

Violet,

Yes I have some narcotics and am using them sparingly. I did contact my family doctor know today that I'm still having a lot of trouble getting through this right now so hopefully they will work with me. I don't feel great about taking more meds but I don't know what else to do right now either.

I also have been referred to a pain center but am still waiting for my first appointment.

Good idea about tucking ice in. I have some really good flexible ice packs that I use in the evening especially when the pain is the worst late in the day.

I want to believe that somehow magic will happen in 22 days, but I know this one is temporary. Very temporary. I don't know how to get used to that idea at all.
waterfall
44 yr old female
endo, IC, PN
Baltimore, Maryland US
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Violet M
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Re: Feeling desperate/23 days until diagnosis block

Post by Violet M »

I know...it can seem like forever when you are in pain. You will most likely find treatments that help calm things down eventually so try not to think of this pain level as permanent. Hopefully your doctor will help you with more meds. I was on quite a few meds at one time but I am off of them now. So please stay hopeful that there are likely better days ahead. ;)

Take care,

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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waterfall
Posts: 13
Joined: Sun Jul 17, 2016 3:21 am
Location: Baltimore, Maryland USA

Re: Feeling desperate/23 days until diagnosis block

Post by waterfall »

It's true I have started thinking this pain level is permanent. I appreciate your reminder it's not.

Thanks, Violet.
waterfall
44 yr old female
endo, IC, PN
Baltimore, Maryland US
User avatar
waterfall
Posts: 13
Joined: Sun Jul 17, 2016 3:21 am
Location: Baltimore, Maryland USA

Re: Feeling desperate/23 days until diagnosis block

Post by waterfall »

Well, time did go by and I have a lidocaine diagnostic pudendal nerve block tomorrow. My surgeon is going it under anesthesia mostly because I'll also be getting a cystoscopy and bladder stretching for my interstitial cystitis.

It's one of those things where you no longer know what you want the outcome to be. I've had no dx for so long and no relief I just wish I could get some answers already and some options for treatment.
waterfall
44 yr old female
endo, IC, PN
Baltimore, Maryland US
User avatar
Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Feeling desperate/23 days until diagnosis block

Post by Violet M »

Hi Waterfall,

Hope your procedures went OK and that you have some answers now. I think that often it is hard to distinguish between some of these diagnoses, even after you go through some of the diagnostic testing. The important thing is to find some treatments that help lower your pain levels, and that may include more than one treatment modality.

All the best,

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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