Living with a Chronic, incurable condition.

[coyote1980]

^^ same for me... although alcohol and caffeine do make it worse...

[CallingAllAngels]

^^ same for me... although alcohol and caffeine do make it worse...

 

Have you tried "Prelief"? I don't drink alcohol, but I do drink coffee...if I take the Prelief before I drink the coffee, I am okay......it's great. But I am not sure if it's available in your country. It's like an antacid...it takes the acid out of the coffee.

 

If you don't have Prelief and want to drink coffee, try taking an antacid first and see if that helps.

 

HUGS

 

~Allie

[coyote1980]

OMG, I'll try that ASAP. I know about Prelief, and I've seen it at Walgreens I think...

I didn't even give it a chance because it said "heartburn", but yeah lots of IC websites suggest Prelief.

Ordering now

I loooooove coffee, and it's SO STRESSFUL I have to drink crappy thing called Pero instead. Ugh.

[CallingAllAngels]

OMG, I'll try that ASAP. I know about Prelief, and I've seen it at Walgreens I think...

I didn't even give it a chance because it said "heartburn", but yeah lots of IC websites suggest Prelief.

Ordering now

I loooooove coffee, and it's SO STRESSFUL I have to drink crappy thing called Pero instead. Ugh.

 

Oh that's GREAT that you can get it! The Nurse at my Uro's office told me about it, and really, it works great. YOU CAN TAKE AS MUCH AS YOU NEED TOO! Sometimes, I will take 3 or 4, especially if I am having a lot of coffee, or eating something that might have tomato sause on it. It's AWESOME!

 

I usually take 3 before each cup of coffee.

 

Let me know how it works for you!

 

~Allie

[annie24]

I have followed the "IC" diet like the Bible, but it doesn't help. So, now I just eat what I want.

 

Doesn't work for everyone......

 

yeah, makes me wonder if you don't have IC????

 

what was the other thing? the pelvic floor condition?

 

have you thought about acupuncture? while i'm more pro-western medicine, i think that acupuncture has some pretty solid effects and is worth trying, or some other alternative medicines.

 

my friend had a really bad rash on her arms that she couldn't get rid of, she went to every doctor but nothing helped. finally her mother took her to a witch in Russia (they are russian). she said that the lady put a spell on her, made her jump over some fire 3 times, and i don't know, something else ridiculous, put a bird feather under her pillow, something like that. well, she said the next day her rash was gone and never came back.

 

i don't know if this story is BS, if she's lying to me, or what or it worked or it was just a coincidence (my friend didn't think that 'magic' would help her) but she says it is gone. well, i guess it can't hurt, as long as you don't pay too much money to such a healer. if jumping over some fire 3 times works though, lol, why not give it a try? just don't get scammed.

[CallingAllAngels]

^I'm willing to try anything at this point.

 

After going a couple of weeks of being able to "hold more" urine in my bladder, I seem to be regressing BACKWARDS...my frequency is up again, and the volumes I am voiding are less.

 

*Sigh* I don't understand. There seems to be NO RHYME or REASON to this disease. I have a week of bladder pain, then no pain, then yesterday and today, SOME pain, but NOT like it was the week before when I was in tears.

 

I am starting to be able to "feel" very small amounts of urine in my bladder again, and that had left for a while.

 

Very discouraging, to say the very VERY least.

[CallingAllAngels]

OMG...I have been in EXCRUCIATING bladder pain since yesterday.

 

I had a rescue treatment from my Uro that gave me NO RELIEF. I called their office to see if I could have another on Monday, or, a "different kind" and they said "we only have one kind" and was told "call back Monday and see how you feel." WT F? I am stuck in this town that has NO URO'S that can help me.

 

I will have to travel an hour and 1/2 from here to see one who is willing to help me, but I am facing back surgery in 2 weeks, so I don't know when I will be able to get in.

 

What a nightmare.

 

Does anyone have anything to offer? I know there are a few girls/woman on here that do have IC. Or does anyone KNOW anyone who has IC that found relief from this nightmare?

 

Please...I am desperate.

 

Thank you

 

~Allie

[Diggitydave]

Hey i am sorry you are going through this. I know this may or may not help. I have clinical depression so i know what it's like to live with something incurable.

[CallingAllAngels]

Hey i am sorry you are going through this. I know this may or may not help. I have clinical depression so i know what it's like to live with something incurable.

 

Thanks Dave...I appreciate your post. I too have depression...have battled it for years, so I know your suffering, and I am sorry for it.

[tiredofvampires]

Have you contacted Dr. Moldwin's office to see if you can do telephone consults with him?

 

Most experts know patients are travelling from out of state (or country!) to see them and will accommodate you, once you've had one in-person exam. That's been my experience.

 

He at least can advise you and suggest treatments, that then you can bring to your uro. And you can ask him to conference with your uro, so they are on the same page.

[CallingAllAngels]

Have you contacted Dr. Moldwin's office to see if you can do telephone consults with him?

 

Most experts know patients are travelling from out of state (or country!) to see them and will accommodate you, once you've had one in-person exam. That's been my experience.

 

He at least can advise you and suggest treatments, that then you can bring to your uro. And you can ask him to conference with your uro, so they are on the same page.

 

I have called him...it's like trying to see the Wizard Of Oz...you can't get past the receptionist. I REPEATEDY try to speak to his "nurse" who is "never in." I don't understand it.

 

Meanwhile, I JUST got a bill for over $10,000 from the Hosptial for the Interstim surgery I had in January. They are NOT covering it because "other treatments should have been used first", and, they have "not been able to get in touch with the provider". My Uro just plain sucks, and could give a shiat less if I am laying on his office floor, wrything in pain. He would probably step right over me on his way to get a cup of coffee.

 

UNBELIEVABLE.

 

This disease is BAD enough, but put a Dr. who is a LIVING NIGHTMARE on top of it and it just makes it ALL the worse.

[Jeen]

I think it is time you talk to one of these!:sad:

 

A medical negligence lawyer is necessary in successfully proving instances of medical negligence. Due to the complexity that medical negligence cases are often associated to, a medical negligence lawyer will have the ability to carry out an investigation in order to gather evidence that medical negligence did occur that is necessary in proving a medical negligence case. Questions regarding a possible case of medical negligence should be directed at a qualified medical negligence lawyer.

 

link removed

[CallingAllAngels]

I think it is time you talk to one of these!:sad:

 

A medical negligence lawyer is necessary in successfully proving instances of medical negligence. Due to the complexity that medical negligence cases are often associated to, a medical negligence lawyer will have the ability to carry out an investigation in order to gather evidence that medical negligence did occur that is necessary in proving a medical negligence case. Questions regarding a possible case of medical negligence should be directed at a qualified medical negligence lawyer.

 

link removed

 

Thank you, once again Jeen. As always, you are a WEALTH of information, and such a darlin' for doing this research on my behalf.

 

Thank you so much...

 

Hugs to you......

 

~Allie

[CallingAllAngels]

Well, I have been away awhile, due to a back operation. So I could take Narcotics for the pain without being in Urinary Retention, I wore a Catheter from the end of April, until it was removed today.

 

NOTHING has changed...I am voiding every 20 minutes. I am sorry, but I am just beyond tears here. WHY is this disease so cruel? Why is there no cure? HOW am I going to live the REST of my life like this??????

 

I am supposed to go to a wedding this month...it is at a small chapel. There is NO WAY I will be able to leave my house, drive to the chapel, sit through a wedding and the receiving line without having to go to the bathroom. NO WAY!!!!!! This disease is crippling and robs you of EVERYTHING...ALL JOY.

 

I will have to skip the wedding and just go the the reception. My boyfriend will have to go the the ceremony by himself. Nice.

 

I wonder how much longer he is going to put up with this bullsh*t disease.

 

Thanks for letting me vent. Any responses are MORE than welcome.

 

LOVE YOU ALL...

 

~Allie

[annie24]

oh gosh, i am so so sorry. ((HUGS))

[CallingAllAngels]

Thanks Annie.

 

I am actually looking into having my BLADDER REMOVED. Apparently, this can be done. HOWEVER, you have to wear a pouch outside your body for the rest of your life that will collect the urine...the opening is right above the belly button.

 

I would MUCH rather do that than live this way. It is MAJOR MAJOR surgery with many complications, but my Uro has told me I have the WORST case of IC he has ever seen, and truly feels this is my only option.

[annie24]

yes, that sounds like an option.

 

have you been to any natural/homeopathic healers? could be worth a try as well.

[shyguy1]

Sorry to see you in so much pain, you are in my thoughts.

 

Please try to hang in there. I know saying to try to hang in there and that you are in my thoughts is small consolation, but please know that you are.

 

Can't imagine what you are going through, my hope is that things will eventually start to improve for you.

 

I've not read this entire thread, so perhaps this has already been addressed and if so I apologize.... anyway how much research is being done on this particular condition? I would assume at least some is, hopefully there will be a breakthrough of sorts at some point.

[tiredofvampires]

Allie, please don't consider surgery until you've exhausted ALL other options.

 

And if you were going to consider something that drastic, I'd go back to that specialist in Long Island and ask him what he thinks, as the expert. It concerns me that you seem a little to quick to consider the most radical things very soon in the game. I know you feel tortured, but I know women with this condition, and it HAS improved (I wish I could tell you how, but I don't know them well enough.)

 

Part of exhausting options includes trying to get your body to maximum health, as good as it can be, even with this condition.

 

What I mean by that is, have you quit the smoking? I know that's not a magic bullet, but you're still smoking, if I'm not mistaken, and while that's not a cause of IC, all those toxins your body has to rid itself of (and that's through your urine) are doing how much more harm to your bladder than you are aware of?

 

Also, your Uro is a POS doctor who has messed you up before, so you can't really trust him, imo. And you said he didn't even diagnose you properly. That no one has done the cystoscopy. That's the last thing you wrote about -- not that doc in Long Island, and not him.

 

Have you been scoped yet?? You weren't even sure a couple of months ago that you HAD IC, and other docs have been skeptical.

 

Your symptoms sound like that's what it's got to be, but they have to get you a concrete diagnosis!! They need to LOOK inside your bladder.

 

And I don't know what meds you've totally exhausted, but that uro/gyn I went to told me he uses antihistimes with ALL his IC patients.

 

And I echo the idea of getting to a naturopathic doctor and acupuncture. I am under the impression you haven't tried any alternative medicine, and you have to try everything before doing something as drastic as bladder removal. I totally know the feeling of wanting to "cut it out/off" with pain....but you could go from the frying pan into the fire.

 

All mainstream medicine knows how to do is patch damage and suppress symptoms for chronic disorders, they don't know a thing about healing the body or helping it to heal itself. That's in the province of alternative medicine -- dietary approaches, herbal treatment, energy work, addressing allergies. Please give it a good hard shot?

 

I'm so sorry you're in so much pain.

 

(((HUGS)))

[sidehop]

I'm very sorry to hear you're still suffering Allie

 

Like ToV mentioned please do consider other options before taking anything out of your body; as much as I cannot relate to what you're going through right now I'm confident there are treatments out there that can really help you, even if it changes aren't seen right away.

[annie24]

yes, i second what TOV said - please go to the specialist again. if your current doctor (the one who didn't diagnose you correctly) told you your bladder needs to come out, i would certainly get a 2nd, 3rd, 4th opinion before doing anything!

 

and agreed with tov again - if you are smoking, you really need to quit. I realize that this isn't easy, especially when you are in so much stress and pain, but I just don't think that these toxins can be doing anything good for you. I really do think in instances like this where western medicine isn't doing a lot for you, to go some other route. Diet, for sure. Figure out what makes you feel better and worse. And i would look for a good accupuncurist as well. I'm sure you can find someone reputable, maybe even covered under your insurance?

[Crazyaboutdogs]

I am going to ditto what TOV said. I also want to ask what the situation is with your boyfriend. Does he have a job yet? Previously you were so upset with him and how he was sponging off of you and not treating you right and how you wanted him to pay his share of the rent or leave. Then the minute he gave you some kind of diamond ring suddenly he became the greatest thing since sliced bread. So have things improved with your boyfriend..because stress in a relationship can make health problems worse. Also, what about the drinking issue...have you stopped that completely? Before considering radical surgery you need to take stock of all aspects of your life, eliminate things that can make the health problems worse, including toxic relationships.

[CallingAllAngels]

Thank you all for responding. I continue to get worse. I believe I am losing bladder function completely. But, after consulting with a Uro 2 hours from my home, I would NEVER have my bladder out...he sees woman who have had their out and STILL feel the constant urge to urinate. THAT would be the END of me...

 

I am still smoking...I do not care to live a long life with this disease, and, it it the ONE thing I have left.

 

CAD - I haven't had a drink in 5 months, I am proud to say. ONE thing I have is my sobriety.

 

My BF is very supportive regarding this situation, and, he HAS started to pay me more to live here. NOT quite 1/2, but damn close. He has not found a job, but, I don't make that MY problem anymore. That's his. If he wants to exhaust his life's savings living here and paying for other things, that's his business. I have too many other things to worry about.

 

This month, because of this disease, I MYSELF lost MY job...my Disability benefits ran out. I was making almost $52,000 a year, and now I wait on the MERCY of SSDI.

 

And I wonder why I can't sleep??????

 

This disease has LITERALLY taken EVERYTHING from me...including my job of 23 years.

 

Heaven forbid a man can't get it up...they "RUN" to fix that problem. But women with IC are left to suffer with Uro's who just have NO clue...it's like they are shooting darts, and everyone has a different opinion. That's just bullsh*t in my opinion. I have NEVER known such suffering on earth existed. I cannot imagine what Hell must be like...

[annie24]

i am so sorry sweetie. i wish i could make the pain go away. i am sorry about everything, you just really got a raw deal.

[Ellie2006]

Allie, so sorry to hear about all of this ...

wish there was more i could do or say ...