Please help me today I am in so much pain....

[MommwithIC]

Hi All....
I have been a lurker for a bit. Finally Joined but today i need help/advice/support. My story is to long for me to type up right now as I am at work but I am in terrible pain in what I believe to be a flare up ongoing since May.
I have been to a total of 4 specialists. I was diagnosed with IC after the birth of my child last year in January 2010. With the birth I had a c-section and the catheter removal was what brought on EXCRUCIATING pain that never went away. Then I went to Dr after Dr after finally that may the horrid urologist i was advised to see said I had IC. Well i have been to 4 urologist now and NO MEDS WORK. The only thing I can take is a hydrocodene that my psych dr who treats my ADD prescribed to me to help me because I said no dr will prescribe me any pain meds. Well he prescribed that back in May of this year and I have been holding on to it and talking a half a pill at major flare ups. The last urologist I just went to was a gynourologist (if that is titled/spelled correct) or urogyno.
She did a potassium resistance test which didn't bother me. When she did the placebo part - 1st part it hurt my urethra going in and burned right above my pelvic bone (i think that is correct) but i told her that I couldn't tell a difference in pain. I told her that I am ALWAYS in extreme pain so it felt the same. ha ha

Then following week my mom got me a homeopath dr appt who put me on Jp-x (kideny detox formula from natures sunshine) and adrenal support. She was amazing and diagnosed me without me telling her what was going on so i do have faith in her as she did not know my history at all.

This is my problem. I have tried every IC med on the market and NOTHIING has helped at all. The only thing that helps is when I take half of a pain pill. This cuts the pain. But I just typically deal with the pain because i only have a few left. I have done really good as those are from May. The last dr wanted to do bladder installations. However I do not want any more cathetors has that leaves me in bad urethra pain.

I am in constant pain. i am desperate. The homeopath did a alternative test on me and said that my pain tolerance was really high and she said that was bad because sometimes when things happen its too late. if that makes sense.....
I have tried the diet and I don't seem to be affected by foods but am once again willing to start removing foods...

Meds I have tried: Elmiron, Darpax, Uribel, a purple pill, - all the anti spasmatics do not do a thing, a gell, a patch, sorry i dont remember every name, Elavil (sp?) and anything else you can think of
Pain meds - hydrocodene, nucyenta (sp?) - made me sick to my stomach - no urologist will prescribe me a pain med stating that i will get addicted but I am a 36 year old mother and wife with a family who works full time and overtime. sometimes I need help with the pain.
Alternative meds - pumpkin seed, sarsaparilla, marshmellow root, kidney detox, adrenal gland support, licorice root, aloe vera

Here are my symptoms..
Constant bladder type burner, uretha burning - ALL THE TIME 24/7, I will get uretha type nerve pain like lightening strikes (if that makes sense).

Here are my issues/questions....

1) Can anyone on the diet tell me the best way to go about this? I drink one daily coffee. so should I just start with that and just continue. also what if i lapse and have a coffee will that affect me if my bladder is starting to heal...

2.) Has anyone else tried every medication and nothing worked?

3.) Is anyone else feel like they are in a constant flare? When i was diagnosed with this last year it would go away for a week to a month then come back now I have had constant, horrible pain since May.

Today I am exhausted. My granny was just put into hospice and I live 4 hours away from my parents/granny. I am tired with a 18 month old and i tend to be withdrawn, cranky, etc. Antidepressants aren't working and I just don't know what to do now. I just ordered these aloe vero leaf capsules that I am waiting on and hoping wit the change in diet they will help....

I have more ?s but i am at work and typing this because I am just simply exhausted and the pain today is HORRID.....

thank you for reading this poorly typed/written post but I have to be sneaky here...ha ha......any response would be appreciate! thank you amy

[MommwithIC]

Ops sorry the post is so dang long! I just know noone who has this and no one seems to understand my pain levels. We had the stepgrandbaby birthday over the weekend and right before the party i just laid in bed crying in pain. My husband took my daughter and said just get some rest and stay up here. But I couldnt do it. I had to be there for the party. It is just so hard trying to be a active member of my family, society, work, etc. when you have this horrid 24/7 pain.
Secondly do I for sure have this? I have had one cystoscopy done last year. The last Uro i just went to I showed her my pictures from it and she said that told her nothing and just basically threw the pictures on the desk but the homeopathic dr who is 85 - comes from generations of medical doctors looks right at the 4 pics and she said - do you see this first pic? that is where your bladder is healthy. the other 3 pics with the redness,etc show it irritated.
now I dont know who to believe.
i have another uro to try recomended by my ADD dr...
That is another med I am on Adderall for my ADD....
Im just so confused and dont know what to do. This pain is so hard to deal with and no one udnerstands because they cant physically see me in pain. if that makes sense.
this 24/7 flare. i have got to have so sort of relief.....

[ICNDonna]

I'll try to answer your questions.

1) Can anyone on the diet tell me the best way to go about this? I drink one daily coffee. so should I just start with that and just continue. also what if i lapse and have a coffee will that affect me if my bladder is starting to heal...

IT'S MY OPINION THAT THE BEST WAY TO DO THE DIET IS TO PRINT OUT THE FOOD LIST (THE LINK IS IN MY SIGNATURE BELOW) AND INGEST ONLY THOSE ITEMS LISTED IN THE "BLADDER FRIENDLY" COLUMN. THAT SINGLE CUP OF COFFEE COULD CAUSE YOUR PAIN THROUGHOUT THE ENTIRE DAY --- OR FOR SEVERAL DAYS.

2.) Has anyone else tried every medication and nothing worked?

NOT KNOWING HOW LONG YOU WERE ON THE VARIOUS MEDICATIONS, I CAN'T HONESTLY ANSWER YOUR QUESTION. FOR EXAMPLE, ELMIRON CAN TAKE SIX MONTHS OR LONGER TO BECOME EFFECTIVE --- HOW LONG DID YOU TAKE IT?

3.) Is anyone else feel like they are in a constant flare? When i was diagnosed with this last year it would go away for a week to a month then come back now I have had constant, horrible pain since May.

I HAD CONSTANT PAIN UNTIL I LEARNED WHICH FOODS AND DRINKS ARE A PROBLEM FOR ME. I WAS DIAGNOSED 36 YEARS AGO --- AND AT THAT TIME NOT MUCH, IF ANY, THOUGHT HAD BEEN GIVEN TO A DIET CONNECTION, SO IT TOOK ME MANY MONTHS TO FIND MY TRIGGERS.

There are many, many different treatment options out there. It may be that instillations would help --- I know they have helped me in the past.

Sending welcoming hugs,
Donna

[MommwithIC]

Thank you so much Donna for your reply!
i have downloaded and already printed the diet you provided.
also I was on the meds for MONTHS, sorry i didn't include that in my post. The elmiron literally made me loose clumps of hair and that is why i couldn't take it. The elavil or alavil - i took the smallest dosage and then cut it in half. I wont take it because I woke up to feed my baby for her 3 am feeding the first night i took it and woke up with her dangling between my legs. Apparently I had blacked out on it while feeding her. Luckily she had fallen asleep and she wasn't hurt. The others I also took for a long time. In fact I still am taking the uribel hoping for it to do something and that has been 9 months.ha ha

i don't want to do the bladder installations because I have had 5 catheters done in the past couple of months and I am worried its doing more damage than good.....

thank you so much again for your response!

[Ebu's Mim]

You have just been really good advice on how to deal with IC and I would like to add some to it. I understand the things you talk about. Pain for a long time, mixed signals from various doctors, having difficulty getting empathy because your pain is invisible and the lighting strikes. Research has shown that we actually get electric shocks at a cellular level.
The most important thing I have learned is to research this as much as you can. You learn new things all the time. I have found that perfumes are deadly for me. I use liquid laundry detergent because it leaves less residue on my clothes. Handmade soaps that are unscented. Vibration from your vehicle can be a problem as well as temperature changes. I am bothered by extreme cold or heat and of course diet. Most important thing to remember is that IC affects each of us differently and some symptoms seem to be unrelated because they seem too weird, such as pain in the clitoris.
Spend time here as you will find validation for what you feel and discover that you are not alone with this and research, always research! I hope this helps. Hang in there.

[MommwithIC]

Thank you Ebu's Mom for the advice and time you took to comment. I really appreciate it.

The homeopath dr/nutritionist that I saw said that she felt that when I had my c-section either my bladder was nicked or that right now with the ic I am just really sick and my bladder is out of place. She said that your bladder fits into a niche in your body and right now she believed mine was out of place. She said that once I get well it will fall back into place.....

I'm going to try the diet. I'm just so exhausted right now. We live 4 hours away from my granny who was just admitted into hospice and i have a small family. the stress alone is horrid. i am finding all i am doing right now is complaining....

the issue that I don't get is why did this show up right after the catheter was removed after my c-section. i never had a issue until then.

well whatever it is or maybe why I will just keep on trucking. with all the work i do and research on my grannies issues its hard to find time to research h this board because there is SO much. its a wealth of information. i need to start taking atleast 30 minutes a day to track the board....

thank you again!

[earthlady]

Is it possible to be referred to a pain specialist, or can you go to a pelvic pain clinic where they specialize in pelvic pain? It may be worth a try if individual drs. aren't able to help you.

[ginaaa22]

There are other meds out there that I see you havent tried. Neurotin is an anti seizure medication but is said to help people with neuropathic pain. There are also many other meds similar to neurotin like lyrica and other antidepressants. Atarax can also help. Neurotin and atarax both come in generic and are fairly inexpensive. For the urethral problems you could try lidocain cream. You have to get a prescription for this. Also have you tried physical therapy?

I too felt like no meds worked for a long time but I didnt understand the importance of the IC diet. I also had other conditions undiagnosed that were contributing. If pain is your main symptom and your not getting relief maybe its time you go to a pain management dr. Some dr's either cant or wont prescribe pain meds for us. Good luck.

[ABliske]

I read the original post but have not read all the replies. I am a 30 year old mom of a 3 year old and I can definitely relate to a lot of what you are saying!! I am at work and I'm in horrible pain!! I hate this. It's just exhausting.
I gave up coffee and that did help with the urethral pain I think. I still have bladder pain through that no meds have helped with. I have to be on constant pain killers. Luckily, I have a good uro that prescribes them. I'm always trying to take the lowest does possible though.
Keep in touch. I hope things get better!

[ABliske]

A good coffee substitute is Pero or Cafix. They can be found in natural food stores and have no caffiene. They've made it easier to go without coffee. Just thought I'd mention it.

[jameson77]

urethral burning.....me too.....

hey there..........i saw this and had to post......i live with urethral burning every day and that is always a complaint of mine. i have found that drinking a mixture of baking soda with cold water helps..........also, i could not live without my 2% lidocaine gel (this is a prescription).......after using the bathroom, u apply it to the urethral opening....and it gives a numbing sensation and calms my burning.

as u can see in my signature, i have several other medications that make my daily life more comfortable........but the urethral burning is always what gets me --- at work is the worst, when i am sitting at my desk......so i make it a point to get up and walk around a lot.

it took a while to get on my medication regimen and to figure out what worked best for me......u are definitely in the right place......best wishes to you!!!

meredith

[MommwithIC]

Thank you everyone for your responses and advice! I really appreciate it.
I have to date not found a med to help. I have also removed certain items from my diet and that did not help either. So today I am going to try to do the diet cold turkey. I am scared...but am going to try it. Hopefully I got everything i wanted to eat out of my system over the weekend! Im going over to the diet forum to post some ?'s...thanks so much for the support!

[newICnurseynurs]

Hi, I am newly diagnosed and having a very rough time of it. I started the strict IC diet, and that has definitely helped. I can not even think of having a soda, or tea, or coffee. I am still new at this, and have not tried many things yet, but I find when I drink milk, it helps a lot. I now drink lots of milk, and the only other thing I drink is water. I have found eating ice cream can be a real saving grace too, so I don't feel like I am being denied so much, and it makes my pain better. I have also discovered that applying a cold wet compress (i.e. a washcloth with cold water) to the vaginal/urethral opening calms the pain a bit and helps with the vulvar pain I have as well. I usually hold in on there for a few minutes. Hope this helps. Pay close attention to the things on the I.C. diet that are marked as "soothing"..they really can be. Good luck.