recently diagnosed

[Nikkie]

hi! my name is nikkie and of course i am new to the IC game. Well, not exactly. I have had it for almost a year undiagnosed. it started with a bladder infection... that just didn't seem to go away for months... then there was suspicion from my primary that i may have IC, well she sent me to a urologist who only looked quickly and told me, "no, you don't have it. take this valium for six months and you should be fine". well, needless to say i wasn't, but i did sleep! still, nothing came of it. my primary first prescribed me with atarax, which just made me tired. then elavil, which drove me insane and i didn't sleep for four days straight... then an atempt by my primary to get me to see a psychiatrist, because it was all in my head.
then, gyno decided i might have genital warts. after two months of treatment with a cream that wore away at my vaginal walls, a second series of gyno's told me in fact, i never had genital warts... well, now i was in pain in more than one way. it took months for my vaginal walls to heal... all the while i was engaged and planning to get married only months from then...
finally after consistent complaints to my primary (i called her atleast once a week just to ask for something to help with the pain, which no one ever gave me). i felt like i must be crazy, everyone else seemed to tell me i was. :loco:
needless to say, finally i got my primary to send me to another urologist. finally it was decided (after almost a year of excruciating pain) that there must be something more wrong with me.
so, long story short, i had my hydrodist. and my cysto last friday... not so fun. i did finally get a proper IC diagnosis. I just don't know where to go from now... I am so sad, but more angry.
thing is, i am still so bloated in my mid section. it actually is more uncomfortable now than it was before the surgery/tests. is this normal? i get shooting pains around my rib cage and my pelvic area, but mainly the discomfort is much lower. they did dialate my urethera, i am thinking MAYBE this has something to do with it? How often does the hydro work? and how long does it take to start being effective? :help:
sorry to be so long winded. it has been a really long road, and i think i am just feeling more uneasy than ever about all of this. luckily my husband has been really supportive this whole time. it is just tough being a newlywed and never even being able to have real contact with my new husband... i guess there is more than one problem here!!! anyways, thanks.
nikkie.

[Dixiefireball]

:hi: ya nikkie and :welcome: to the ICN family. I'm sorry you had to go threw all that run around to get dx. many icer do have to go threw that song and dance sadly.
did your doctor start you on Elimron? this is a drug that will coat your bladder but it takes sometimes up to six mths to an year to work many doctor will either give an dmso treatment or an cocktail treatment in the bladder to give the elimron a boost.
Oh and the IC diet can help make a big diff. in your pain level I really thing you should start on that asap you can find the diet and much more information on treatments at www.ic-network.com/handbook that is the best place to start.
Please keep us updated on how you are we do care.
sending you many hugs and prayers
Hope you had a Good Thanksgiving day
Rhonda

[kelly McC]

Hi and Welcome,
Thank you for sharing your story. I am glad you finally have some answers.There can be some discomfort following the procedure what if it continues you may to check with your doctor. Sometimes infection can occur. The diet can help also stick on heating patches.Good luck with your treatment plan,
Kelly

[Hollydoll85]

Welcome to the ICN! Sorry you had to go through so much to get diagnosed...the more I read the luckier I feel that I was diagnosed as quickly as I was. I hope you find what makes you feel better soon! Good luck!

[Hollydoll85]

Welcome to the ICN! Sorry you had to go through so much to get diagnosed...the more I read the luckier I feel that I was diagnosed as quickly as I was. I hope you find what makes you feel better soon! Good luck!

[ICNDonna]

I'd like to add another :welcome: to the IC Network. You'll find a lot of information and support here. It's not unusual to have more pain after a hydrodistention --- it's a surgery and does require some recovery time. If your symptoms don't improve within a day or so, I suggest you telephone the urologist's office and arrange to be checked to be sure you don't have infection. Any time we have any bladder procedure it does increase the potential for infection.

Did the doctor order pain medication for you to help in your recovery period? If not, it would be completely reasonable to telephone and ask for some.

I have read that hydrodistention helps about 50% of IC patients. I hope you will be within that number.

I encourage you to begin an IC diet today --- it can help significantly.

Sending healing thoughts,
Donna

[SharonA]

:welcome: It's so good to have you here. I hope this place helps you as much as it has me. I felt so all alone after I was diagnosed. I had never heard of IC before the uro told me I had it. I said, "okay...what do I have to do to cure it?" When he told me there was no cure, I about flipped out. After finding this Web Site and taking the time to read the information available in the Patient Handbook, I was still shaky but better informed. I was able to become an informed member of my own health team. Over time with the cooperation of a caring doctor, I have been able to find treatments that enable me to live my life pretty much pain free. Yes, there is hope and there is life with IC. :)

[Nikkie]

Thank you so much for all your kind replies. It really means a lot to me. I am curious, do most just drink water, and not much else? I know IC symptoms are different for everyone, but is there anything aside from mint tea, milk (which i can't drink) and pear juice that ICers commonly don't have a problem with?
Anyhow, one other question... i have a lot of tingling discomfort in the vaginal area... is this a commonality?
Thanks again! Hope you all had a nice turkey day!
Nikkie :)

[Sarojini]

:welcome: to the ICN!!! Seems like you've gotten quite a bit of good advice already here. As for the vaginal tingling that sometimes goes along with IC... sometimes it's caused by nerve signals getting crossed in the pelvic area, and sometimes it's caused by a condition called vulvodynia... which is kind of like IC on the outside. There is information on this disorder in the Patient Handbook (http://www.ic-network.com/handbook) and you may want to take that to your gyno and discuss it.... I know, I know, the last thing you want right now is MORE doctors, but you need to find out exactly what's up. :)

Hope you had a good Thanksgiving!!!

[Katrina]

Just wanted to add my :welcome: to the ICN! Your story of struggling for a diagnosis is very sad....even sadder is how many of us had to go through such a struggle...I really had hoped/thought it was getting better. Anyway, the new path begins now that you have the correct diagnosis. I am thrilled you found us to help you through it. Please come to us and allow us to help you in any way we can. Once again, :welcome:

[ICNDonna]

I'll try to answer your question about what I can drink. I can have one cup of coffee in the morning (low acid). Also, there is reduced acid orange juice (Tropicana and Minute Maid each make one) --- I suggest only about 2 ounces until you know if you can tolerate it. Some ICers drink almond milk or rice milk.

There are also lots of herbal teas and postum. I like white chocolate drinks, but they are little harder to find.

Water is still the best beverage for me.

Donna

[VickiB]

Hi Nikkie and welcome!

It's no wonder you feel sad and angry! It sounds like you went through the wringer on your way to diagnosis! I'm glad to hear your husband is supportive, that can make such a difference.

Mainly I drink water, - a lot of water. Just for variety I have low acid coffee (Kava) in the morning, and a glass of milk with dinner. It was boring at first, and I missed having an occasional soda, but I soon became used to the change. I have found I can drink a bit of brown ale beer with no pain, but it seems like the vast majority of IC'ers can't tolerate alcohol. Like Donna mentioned, anything you try, it's best to try it in small amounts until you know how it will affect you. There's no guarantee that what one person can eat or drink with no flare will give you the same results. IC is funny that way!

Hope you're feeling better soon!

Vicki

[cybersis]

Hi Nikki

I was diagnosed on Monday and spent the next two days crying my eyes out. I had the cysto and have pretty much spent the week in bed with a lot of pain and yes a bloated stomach! The pain has subsided to a managable level but the bloating remains. I have actually been following an IC diet for two months now (suspected I had IC but had to wait for tests to confirm it) I have given up all soft drinks, coffee and liquor and feel better. I drink lots of water and have a de cafe tea (with a prelief) every morning. The people here are wonderful. They will lend an cyber ear whenever you need one and a cyber shoulder to cry on. Keep coming back whenever you have a question, there are lots of people going through what we are and they can answer questions from their experience. Makes this whole journey a little less scary.