Sooooooo much pain!!!!!

[Stephy]

Hello! My names Stephanie, and Im pretty newly diagnosed. Just looking for some Info, also maybe for someone whom has had a longated flare, and maybe some hope that it'll be okay :headbang:
This past week and a half, I had been feeling like I might possibly have a bladder infection. All sighns pointed to yes so I headed to my GP. She hadnt been working the day I went in and saw another dr. that had diagnosed a bladder infection because of white cells in my urine. Two days later I eneded up in the hospital all tests were negative for any kind of infection in my body. Turns out the white blood cells were from a previous cold. Frustrated and in pain the Dr. sent me home with no solution on how to relieve any discomfort. After a long painful day I was on my way for an ultra sound, the wait for results were too long and the pain was so bad that I ended up in the hospital AGAIN convinced my bladder was going to explode, it was painful to walk, i was having spasms in the vaginal walls, as well as my intestines, Ithe more i peed the more it hurt, my bladder was actually sore to the touch from the outside, which is nothing new lately. Well, the Dr. did a pap, had my ultra sound results faxed in and all my blood work. After all that.....nothing sigh. He gave me some adivan for pain four other pills I cannot identify and a perscription for anti inflamitories along with some codine to be able to sleep at night. Saw my Gp the next day and she said I would have to be refered to a gyno and it was most likely IC. :hmm:
Not too too sure what its all about and havent been told about the severities or HOW LONG IT LASTS. Im almost done my period and its been almost 2 weeks, although I was much better today, I was hoping some one might be able to shed some light for me. The pain is unbearable and Im hopping it will go away soon. Maybe some one has had a simillar flare? Just not sure if it usually lasts this long or if im all alone :idea: Or maybe someone has an Idea on how to ease the pain for long flare ups.
Any advice is greatttttttly appreciated.
:help:
Stephy
x0x0x

[massagedoula]

Ok, here I go...

Firstly I want to say that you sound a lot like me when I first got IC. I probably had a flare for the first 3 months non-stop! This was because I had not figured out about diet yet. Being on a special IC diet is a very important step in getting your symptoms under control. You can find the sample diet under the patient handbook section in the ICN home page.

Secondly, try simple measures like 1/2 tsp baking soda in water 2 times a day (unless you have high blood pressure). It helps alkalize the urine and reduces irritation to the bladder.

Thirdly, I think you want a referral to a urologist, not a gynecologist. IC is a urological problem, and while some of us do get treated by gynos, a uro is really where you will probably find the most help and knowledge about IC.

Finally I want to comment on one thing. Not one other IC patient I have ever heard of has vaginal spasms except me and you!

Have hope. I have had IC for almost a year and I am about 70% better now than I was last year after being on the diet and starting natural and allopathic medication.

PS...one more thing. Stick on heating pads, hot water bottles, plug in heating pads...These are all your friends now~! Use them whenever you need to....

[rosesitty]

I'm sorry to hear you're hurting. I've had mild IC for two years now, but I've been in a flare for 2 months. The symptoms and severity go up and down, and I'm working hard at trying to get back to my baseline. I know it feels like it will never end - in fact I have to deal with those feelings every day - but with knowledge comes power and support from those who fight the same fight comes reassurance. I'm watching my diet, and taking Urelle, Atarax, Sanctura, Calcium Citrate, Acidophilus, Flaxseed Oil - trying to find a combination of meds/alternative options that will work the best. It takes some time. From what I've read in the posts a flare can last from a few hours to months. We all know how hard it is to be patient. Wishing you no pain.
Rose :welcome:

[ICNDonna]

:welcome: to the IC Network.

It does sound very much like you might have IC. And I agree that seeing a urologist is a good idea.

The Patient Handbook (scroll to the top of this page for the link) will give you information on symptoms and diagnosis. You'll also find the IC Diet there - and I suggest you begin that today. It can make a real difference if what you have is IC and it can't hurt to try it.

You might also try taking some Tums instead of baking soda if you need to control sodium intake for any reason.

Sending warm healing thoughts,
Donna

[emilyrose197377]

:welcome: To the ICN. It does sound like you have IC.

[Kara Isabel]

Hi Stephy!!

I can tell you, that you can identify the pills on www.drugs.com, just run a search for pill id w/ the color and letters and numbers on the pills and you can find out what they are. I personally don't like taking anything unless I know exactly what it is.

I don't know as much about Ic as alot of the others on here, being fairly newly diagnosed, but not new to the pain and flare ups but I have noticed a really big correlation to food! And of course the flares during my period are HORRENDOUS no matter what. Really pay close attention to what you are eating and drinking, I have found a few things to be triggering. Heating pad is essential. Just take it easy!! Curl up w/ a book and you heating pad and relax.

Hope you feel better soon!
Hugs,
Kara

[creatingkarma]

Hi & :welcome: to the ICN. I hope you get some answers soon & start on the path to feeling better.

[BigFig]

Hi Stephy and welcome to the ICN :welcome: I, like you, ended up at the ER in September. It took until December before I finally got a diagnosis. I was in contant pain/discomfort until last week. So basically I was in severe pain for almost 4 months. I found this site so informative and got alot of great information. I follow the IC diet closely as well as taking Elmiron 3x day (only been on it three weeks ) Elaval 25mg at nite, Neurontin 600mg at nite and Hydrocodone as needed for pain. I saw a Acupuncturist last week on Thursday she really helped me with my diet. I noticed really cutting back on the carbs a great help for me. I would follow the diet strictly and find out what your bladder can or cannot tolerate. Sorry to say but sounds like it might be IC. Be glad you found this site, like I am. The diet my uro gave me to follow was so basic! You will find alot of info here and alot of support! Hang in there :)

[Stephy]

:bow: Its so nice to be able to relate. I completely appreciate all your help and advice. Today was a not so good day but too my surprise a new employee at my work has IC and will be bringing me a book on the disorder tomorrow she also gave me a few pointers on the vitamins and natural supplements that she uses to keep it under control. I also went to the health food store this afternoon and the woman told me that cranberry supplement pills were great to help treat the condition, so i picked some up 'UriSence & probiotic essentials BB536'. Maybe someone has heard of it? Is it any good? It was'nt cheep so I hope it helps :)
Anyhow, Thank you so much for the tips and the warm welcome!
Hugs
Stephy

[massagedoula]

Aargh!

Cranberry pills are NOT good to help IC. They only work for a UTI. That acidic cranberry will hurt your sensitive bladder. Please don't take them until you read more about IC. There are many things that will irritate the bladder and cranberry is one of them. Many many people will mix up IC with a UTI. IC is not a bladder infection.

[boohiss13]

:grouphug: Hi Stephy!

I'm new around here too, and I'm still in one long gigantic flare myself. I've been in straight, non-stop pain for going on 5 months (it's waxed and waned sometimes if I ate very little; but this isn't good to do!).

I'm so sorry you're in so much pain; I know exactly how you feel!

If you go over to the IC Network site, there is a list of areas and urologists for you.
www.ic-network.com (http://)
If you don't find anyone in your area on that, just look up a local Uro. It may help to give a call first and ask if they treat patients with IC and could you be tested for it. When you're tested you'll probably be put in the hospital, I just went in for a few hours one morning, put under, and a couple of tests run. They SHOULD be able to tell you for sure after that if you have IC. Here is a thread on this board about the tests normally given: http://www.ic-network.com/forum/forumdisplay.php?f=56 (http://)

If you are in THIS much pain though, I would go to your Primary care Doc ASAP and get something for pain. Maybe your Primary could refer you to a good Uro if you can't find one on the IC site. I hate to think of you in so much pain; I think it's awful for people to have to tolerate that much pain without some medication to help.

Before I was on pain medication, there were a few at-home things I did that would sometimes help it lighten up or were soothing:

1) Take hot/warm baths in Epsom salts
2) Put a heating pad on my bladder or between my legs or both (I have two heating pads just for this purpose)
3) Taking ibuprofen every 6 hours (helps with any swelling)
4) Get my husband to give me a massage with massage oil (Almond by Kama Sutra is my favorite) Stress can exacerbate IC, and I've been really, really stressed out the past year, so if I can get totally relaxed, sometimes I see a difference. It also helps me to get to sleep; and getting enough rest is important.

I really hope you find someone soon!

Best of luck,
Boo :welcome:

[MarthaB]

:welcome:
Martha

[Stephy]

Thanks ladies for the tips. I also picked up some sasaparilla today, its supposed to help with pain after urination as well as calcium magnesium which is supposed to alkalize the urine to prevent discomfort and irritation to the bladder. Im still looking into some things, i guess you just have to find your own combo. :bonk:
Stephy
hugs
x0x0x

[ihurttoo]

Hello! I'm Amy. Sorry to hear you could have it too. Just one more opionion, though. They may want you to see a gyn to be sure you don't have any other pelvic problems that could be contibuting factors. My advice would be to see both a uro and a gyn. Each brings something unique to the table. Also, read everything you can on the site and buy the book by Dr. Robert Mouldwin if you can afford to. There is a wealth of info in it.