extreme flare.severevaginal inflamation anyone else??

[Debbie M.]

my heart goes out to all of you in a flare ...Laura and Christa too, I know how you feel about wondering if something else is drastically wrong with me.... when I am in a flare is mostly when i feel it so intensely.
Today was hell day and yet victory day! I have been in extreme pain, waddling from vaginal swelling so profuse I thought i was going to fall out, bladderpain, and urethra pain that has been getting worse, now with discharge. I am so fortunate that my best friend is a G.P Dr. and is sympathetic. I went in to see her today in tears with pain like labor lol and she did a vag only to find a swollen vagina like shes never felt especially on top next to the urethra. my urethra us so swollen she had to dig and god fobid should she touch my bladder with more than 1 finger!
She cultured everything, gave me a demoral shot,toradolby I.V and steroid shot and vistral.although I got temporary relief, I am here tonight with incredible pain wondering have any of you had severe vaginal DISTENION along with your flair? Can you tell me how you coped or what your DRs said? I am taking my meds (elavil atarax everyday for 2 years)I am almost certain that traveling by car 1300 miles did me in. 2 vicodin every 4 hrs barely hits it. Anyone have similar things happen at once so bad you cant sit down? Help!!!! Thank you!!!!! Oh BTW the victory is that 1 more time a dr got to see me in a flare and wanted to help!!

[Teri]

Debbie~you are so lucky to have such an understanding dr. Yes, I have the vaginal swelling too. I had surgery on Tues and they gave me a shot of morphine for my bladder pain and I HATED the way the morphine made me feel but I was in heaven because it was the first time in months, maybe years, that I have NOT felt my bladder.....

Sending some prayers and a few gentle hugs too blink

[auntiedeb]

Debbie, I hope you are feeling better very soon. When I have a uti, my bladder inflames and it hurts. I am so glad that you have a understanding dr. That helps alot. Keep us posted on how you are doing.

[vm]

Yes, I haven't had it to that degree, but I have had it. Also, when I get a vaginal infection I flare up. That pelvic region just seems to lose it's mind when one area is sick. Drives me insane!!!! banghead

[Dianne]

I didn't have swelling but wasn't able to sit in a chair for several mos. the burning was so bad. No discharge but very red. I have a wonderful dermo and although I never cultured anything, he put me on sporanox (treats non-candida yeast) as opposed to diflucan and in 48 hours it was mostly gone. It was a miracle! I had to use it off/on for probably a year and eventually that just all went away. Good luck!

[Dianne]

P.S. Also figured out that while on antibiotics, if I had sex, the burning but never itching came back in 2-3 days. Finally figured out that the semen made me so alkaline that it would start up again so if on antibiotics, I use a boric acid suppository after sex and that works.

[Debbie M.]

Thank you all for all your support and kind words! You know, most of the time we ladies handle this terrible disease so remarkably well. I see so much strength in you women! For me, the hopeless,sighing is during flairs...when thoughts come to mind like "how am I going to live the whole rest of my life with this pain/disease? And the sadness comes for feeling so much pain. Then the guilt comes for thinking that way since many have it worse than I do. After all that I get out of my "semi" denial(oh its ok...I reaally dont have ic that bad and I settle back into my skin nd say..."yep I do have it and yep it sucks and yes it hurts....but I am a happy person and I a greatful for my family and all the women whos hair i do 12 hrs a day 4 days a week.a nd for all the support that is here at ICN and I say. .Thank you so much! AND....its ok to whine abit Cause we all need to!

[Ginny]

Have you been diagnosed with vulvodynia also?

G

[Tami Stambaugh]

I have just gotten over a bad UTI and kidny infection so now I have a yeast infection from the antiobodics. So all my stuff down there is swollen. I also have dischare evey time I go to the restroom----it just falls out in the toilet the minute I sit down. My body has always produced more yeast and discharge than a normal person but good God it gets pretty ugly down there sometimes. I use preperaton wipes everytime I go to the bathroom. It makes you feel clean and helps with the irritation. YOu might want to give the a try. You can buy them at Wal-Mart. They also make you feel cleaned and refreshed down there in our little privat area. They are saft to use I asked my Doc. to make sure!!!! Hope things get better!!!

Tami

[Peta]

Hi, I do simpathize with you all. My whole pelvic area is inflamed and in constant pain. I don't even bother to try and have sex most of the time. I have alread lost a marriage over this. But, I am lucky now I have someone who is very understanding and treats me seriously. I am having steriod instillations into my bladder every 8 weeks under general anesthetic. In between I just put up with the pain. I have had 5 instillations and the tears in my bladder lining have healed however there is still a lot of internal bleeding. I was wondering what type of pain relief other people are on. Some of the things mentioned on this site I have never heard of. Well, Iam only new to all the treatment but I have had this pain since I was 12 years old. I am finally glad I found a doctor who is dedicated to helping women like us. I often get really down and think things are pointless, but I know it will get better. I am hopeful. It is great to know there is support out there. Thankyou! Hang in there.

Peta grouphug

[DanaW]

Hi Peta, I also have tears in my Bladder. I think it was caused by the hydro in Sept. is that how you got yours? I am in almost constant pain. Have a day here and there that are ok....do you know how long it takes for the tears to heal? thanks

[Peta]

DanaW,
Hi, my tears are present because my condition is quite severe. The docotor could not believe what he was looking at when he initally examined me. We have studied the picutes he takes evey time and things are gradually impoving. I don't know, I am just used to being in constant pain that I have just tended to try and ignore it over the last few years. I am actually drinking Spirulina (powder form) in V8 juice. It helds rebuild the bladder lining. Sometimes I find it helps. It is also to replace everythig in my body after surgery because the steriod kills everything else. It is great to talk to someone who knows what it is like.

Peta bunny

[ICNDonna]

Peta, are you following an IC diet? You'll find information on the diet at http://www.ic-network.com./handbook/
The reason I ask is that you mentioned V8 juice, which is mostly made from tomatoes, which are a bladder irritant for many IC patients.

Also, there is mixed feeling about spirulina --- I found information at http://www.quackwatch.org/search/web...uery=Spirulina

One suggestion I have is to put yourself on an IC diet to see if it helps --- and be sure to drink enough water to keep your urine diluted.

Sending warm healing thoughts,
Donna

[vm]

Oh, V8 Juice would have had me in tears for DAYS.... frown

[Peta]

I have decided to stop the V8 juice to see if it makes a difference. The reason I was taking the spirilina in it was because I was assured it was non -acidic. I questioned that my self. I am following an ic diet at the moment. I desperately need some other sort of pain relief.

Thanks
Peta