Recently Diagnosed

[scaldwell]

I am sooo glad I found this website. I was diagnosed with IC and volvodynia 2 weeks ago and feel somewhat relieved (I guess the right word???) that I am not the only one with so many questions, fear, frustration...and..pain! I have been looking at this website most of the day trying to educate myself. It is so overwhelming!

[traceann]

Welcome!!!! Oh I know exactly how you are feeling, finding this site for me was like a weight lifting off my shoulders! ;) I would say though, take it in in small doses - information that is, lol. It can get very overwhelming - and sometimes frightening when your brain is on information overload, :)

Once again, though, welcome to the ICN!!!!

Hugs,
Tracey

[baaaby11]

Welcome! While this board can be overwhelming at times with all of the information, just take your time reading through it. This board really does have tons of good information and tons of really nice people. Don't hesitate to ask any questions you might have. :hi:

[ICNDonna]

I'd just like to add another :welcome: to the IC Network!

My suggestion is to look at diet information first --- because that's the thing that can help most.

Warm hugs,
Donna

[scaldwell]

I have been looking at the IC diet and would pretty much be able to drink water only if I followed is closely..hahaha. (I love all yummy foods) I don't eat or drink any of them in excess, but reading through this website, it sounds like even the slightest of something on your own "trigger" list can effect you. I know I need to find my possible "trigger". Today will be my first morning without coffee...ugh..not happy about that! I only have 2 cups in the am...but who knows..maybe it will help with my pain today. It has been 9 weeks of terrible pain and receiving my diagnosis of IC and Vovodynia, 2 weeks ago. I have had instillations of the heparin..hasn't helped at all! Any suggestions out there for the Volvodynia pain??? I sit all day at work and it's brutal!

Thanks

[maryla]

Just wanted to say welcome too. As far as vulvadynia, look at the low oxalate diet. That has helped me tons!

hugs and blessings

[scaldwell]

I see the doctor tomorrow for another instillation for the IC...but if there is anything RIGHT NOW...I can do that may relieve this horrible volvodynia pain...even for a couple days would be so appreciated. Feels like my whole area "down there" is literally on FIRE!!! Please help.

[maryla]

have you tried a baking soda bath?

[loveslife]

Hi scaldwell,
Welcome! There's various immediate things that I've tried that give me some relief including ice or hot packs(sometimes even alternating them helps), a warm bath, pillows under my butt cheeks while sitting to elevate my vulvar area and relieve any pressure on it. Part of how you can help it would depend on what and where your pain is. Mine has been external (skin sensitivity)and internal(urethral pain and pain with intercourse). For the external, loose clothing, cotton underwear and lidocaine gel has helped. For the internal what I mentioned above has helped. What seems to really be helping now though is physical therapy for it. And of course, following the IC diet has been very important to get the pain to go down for me but that has taken some time.
Cynthia

[scaldwell]

Thanks so much for the tips! With the baking soda..how much? Would hate to do too much and cause more issues! The pain I have is constant inner and outta. I also read that Epsom salt baths can help? I am new to all, sorry for all the questions..need relief...feel like I'm losing my mind!

Thanks,

Sherri'

[gialee]

I am sooo glad I found this website. I was diagnosed with IC and volvodynia 2 weeks ago and feel somewhat relieved (I guess the right word???) that I am not the only one with so many questions, fear, frustration...and..pain! I have been looking at this website most of the day trying to educate myself. It is so overwhelming!


It is VERY overwhelming. I'm so extremely glad I found the site too because it's been very helpful and comforting. It's so great to know we are not alone in this. :)

[Iris]

:welcome:Hi like to add my welcome as well. I know at first having the diagnosis can be scary and overwhelming, and I am so glad that I found this support group when I was first diagnosed. You will find lots of help, support and information to help you along the way. I remember the pain and trying to deal with all that was happening to me at first, now and then I must admit I try something I should not eat, and I suffer for it. Prelief was quite a help at first not knowing what would kick off a flare. Pyridium defiinitely made my symptoms worse. My doc tried Elmiron, in fact we tried it twice but did not help me at all. I now am on a regimen of Effexor, Elavil, Ambien and Ultram, which works for me. I really feel badly for you dealing with vulva pain, I had that at first and it was hard to deal with, I also had to have my urethra dilated which was not fun, but I must admit has helped me a lot. Take heart and know you have a wonderful support system in place, hugs Iris.:flower:

[emily1]

Welcome!
I hope you find relief soon. Please, please try the diet and give it time to work before going off the "Usually OK" list. It took me at least two weeks before the diet worked for me (with no cheats), and it takes me that long again if I slip off the diet to show marked improvement. It's hard, but really worth it, and so important for most of us. You probably won't be able to tell in a few days what your triggers are -- give yourself time to heal a bit first--, and you probably have many triggers.
Good luck and hang in there.

[Snowden1]

Sometimes it takes a few rounds of the heprine before you see any results (that is what someone else who was doing them said). How many have you done?
Teresa:welcome:

[moopsy]

How about over the counter pyridium (AZO)? You can only use it for a few days at a time, but it seems to work to at least take the edge off for me so far. The Dr. gave me a prescription dose after my cysto and it works even better.