Can anyone offer some help here?

[Kara29]

I am home from my vacation but still feel awful. This phantom urgency has really gotten me down. Phantom Urgency is just like urgency in the absence of a urethra and bladder. There was no infection right before I left. I don't know what other medications to try for this as I've tried them all. (I am still taking my Lyrica and Keppra) As far as healing from the reconstruction my Surgeon says I am all healed but I certainly don't feel it. I've tried the backup birth control plan (Camila, progesterone only) at the advice of my OBGYN, and it only made matters so much worse. My hormone panel came up normal so there is nothing wrong with them. My pain management doctors have told me they don't know what else to try. They said if I could come up with something they would let me try it. I can really only take medications from the anticonvulsant family such as Neurontin, Keppra, Lyrica.....I've never tried Topomax. My OBGYN does not know where to turn. Pain Management does not know what to try next, and the Urologist never has a darn clue. Is there anything in the pain management family that is non-narcotic that I may not know about that anyone has tried? I don't know where to turn, what board to post on? I feel like a surgical failure because I am still suffering. Some say it takes a year or so to heal but according to my Surgeon I am all healed so this is a flare of some sort due to hormones and traveling.........

Any pain management advice would be greatly appreciated.

Or hormone help.

Or "flare coping strategies help". I don't know where to post this?

Desperate for some relief!

Kara

[blondie45]

I believe tramadol is nonnarcotic and does help some people with IC, so even after surgery maybe it would help with the phantom urgency. Not sure if you have tried this yet or not.

[ShePurzz]

Kara,
I really don't know a lot about these meds because they are some that I was put on but had allergic reactions to them -- but, what about ULTRAM -- I have no clue if others with IC have tried it, but I was given it for pain a few years back -- the first dose was clearly not a good deal for me, however, I have a good friend who uses it for pain and gets great results. (I am allergic to MANY medications, so I think this allergy thing is just me, not these meds)

Also, I know it isn't exactly easy to do, but have you ever had an injection of TORADOL? I get these for muscle spasms in my neck and shoulders, and I don't have bladder problems -- it is a VERY painful injection because it feels a lot like a dog biting you in the rear end -- think sharp teeth! -- however, I have discovered that if you can get a nurse to inject it VERY, VERY slowly, the stinging pain is reduced tremendously -- this will usually give me the edge over the pain -- I use it mainly for the Fibromyalgia problems, but it is also given for severe pain - -they used to try to give it to me for migraines, but I hated the pain of the shot and wouldn't take it -- I used demerol injections when I got migraines -- I don't get them any more, so that is a wonderful blessing for me!!!

Just a couple of ideas -- hopefully you can try these -- then, the obvious things that you are probably already doing, but deep breathing and focussed breathing is very helpful, as are yoga meditation type things... and the cold/hot packs to the area??? Don't know what you have tried in natural stuff, but they are certainly worth a try.

Best to you, sorry you are still in so much pain!!!
Mary

[Kara29]

Thanks for the help. Ths trip just wasn't the right thing for me. I'm sure I will be fine once I figure out what the hormone issue is and a doctor willing to help me with that. I will be keeping a close track on which days I feel well and which days I feel bad. In the meantime I will continue to work with my pain managment doctor with my current meds. I feel like I've put the whole puzzle together except for the middle piece. I just need to find that piece of the puzzle. I will just have to keep looking as I've done for the past 7 years. I just don't feel ready to give up and into this disease yet. I feel like that piece of the puzzle is somewhere near the hormone section of the store. But it could also be somewhere else. I just hope I find it. If I don't find it, I hope I can find a medication that helps me make it through the rest of my life. I'm just really tired of looking for the answers myself. I am going to spend the next week resting and taking it real easy and pray that I start to feel better again. I was this close!

Kara

[ICLori]

Second the tramadol/Ultram recommendation (they are the same drug, just generic versus brand name names). It works better than Percocet for me, with much less bladder irritation.

Hope you will be feeling much better soon,

Blessings,
Lori

[Judith56]

Kara, I understand that you are looking for a quick solution to your pain problem and meds are the first choice. Sometimes unfortunately meds are not always the answer. I am wondering if you have had a chance to explore doing hypnosis, bio-feedback, or any other nonmedication based options. I know for me, learning self hypnosis as well as practicing specific breathing techniques was BIG part in helping get through some tough times. By exploring these options it is safe and one less thing you are putting in your body. Have you tried the other suggestions a few of us have thrown out to you, like sitting on the toilet and pouring warm water over the area to simulate urinating? How about sitting in a warm sitz bath and pretending to pee? I personally had luck with both of these as have a few others I know do this too and felt some relief. Just trust that with the passage of time it will get better! Hugs, Judith

[Imustpee]

Good suggestions Judith....and if I may chime in...yoga....I am wanting to try this...my core muscles are so weak from such a long recovery...has anyone ever tried it?

[armslee]

I began yoga quite some time ago at the advice of my PT. It is really good for relaxation and strenghth. I usually didn't have any muscle fatigue afterward which was one of the reasons it was so appealing to me.

I believe that Poetgirl knows quiet a bit about yoga, she offered much advice to me once apon a time. I do highly recommend it.
It offers me minimal pain relief and it is temporary but the effects on your mood and anxiety are wonderful.

[ICLori]

Just wanted to check in and see how you are doing today, Kara...I am hoping that you are feeling better...(((HUGS)))

Blessings,
Lori

[Kara29]

Thank you for all of your suggestions. Some of them have been tried extensively already for urgency and some of them I have yet to try. Since I took a few days of progesterone it has brought my period on with it so my whole cycle is messed up and now I don't know where I stand regarding how this relates to my hormones but believe me when I say there is a 100% correlation between them and the way I am feeling.

People who have severe pain know exactly the kind of pain I am talking about here. I have been down all day and have not moved. I've been as depressed as one can get in this situation.

Thanks Again for all of your help!

Kara

[redfearn]

:pray: Kara--

My urologist said that there would be a 30% chance that I will have these same Phantom attacks due to such long and terrible nerve damage this IC disease took on our body. Of course, I won't have mine out until next month. NOBODY knows your pain....but YOU...and NOBODY can know HOW YOU Feel, BUT YOU!!!
Hang in there sweetie, hopefully you will find someone to help soon!!! Thanks for being such an inspiration to me in spite of your pain...You're such a great person!!!

:)

[sandramac]

:kissing: :kiss: Sorry you are in pain! I know exactly how you feel, love Sandra:cat: :cat: :cat:

[ICLori]

The one thing that really gives me hope, though, is all the stories that are out there from people who had phantom pains for awhile, but then got better - they eventually go away. I hope and pray this will be the case for you, Kara. Just a little bit longer -I'll bet that by this time next year, all this will be in the past and you will be feeling great!

Blessings,
Lori

[Kara29]

Thank you for the support! I can't fight for myself anymore. I've lost the will to fight. It helps to know that you still have hope for my future. Hopefully you are correct and this will be behind me someday but for today, I need help. I took a sick day today from being sick and did not make any phone calls to my doctors. Tomorrow is another day and I hope to wake up and feel like doing something to get better.

Your hope and faith is cherished!

HUGS!

Kara

[ICLori]

I understand, Kara, I do. It's okay to take some time off sometimes! It's okay to cry, to yell at the walls, to hit the pillow, to just lie in bed with a hot water bottle when you need to.

But we IC'ers are tough, aren't we? We pick ourselves back up and say "okay, what's next on the agenda?" And we keep marching on.

We are going to make it to the promised land, I'm certain of it - that land that has no pain, no symptoms! We just have to keep marching, just keep putting one tired foot in front of the other.

Do me a favor - this will sound silly - but you find a calendar, that is about one year from now, and circle a date on it. Doesn't have to be exactly one year, you might want to choose a special date or something. You circle that date with a big circle, and you tell yourself, "By that date I will be better! And I'm going to hang in there for now because I know this isn't forever!"

Blessings,
Lori

[Kara29]

Lori,

I did the calendar thing. It's Sept. 11th. Can't forget it!

Thank you for leading me forward!

Kara

[Mel53H]

:grouphug:

[George]

Dear Kara,

Please keep your spirits up. I know you don't "know" me too well on the boards but you have posted when I have been in crisis and that has meant a lot to me. I can't offer any practical solutions for you, but I can only say I know that we just have to keep looking forward. I also think that Lori said it perfectly and it gives me hope as well when she said:

"We are going to make it to the promised land, I'm certain of it - that land that has no pain, no symptoms! We just have to keep marching, just keep putting one tired foot in front of the other."

As difficult as it is, I think we do have to keep marching and putting one tired foot in front of the other. Some days though I think are just meant to pass. Those are the days that are truly awful and we are in pain and can't get any relief. Some days we just feel that we won't get better or that we can't face another day ... but I think those days just have to pass and we need to look towards the next day. I'm no great example of being positive Kara, and I really struggle at times, but I guess I just wanted to encourage you. You are such a wonderful example to us all.

George