I'm a newbie

[Walela]

Hello Everyone!
First, my heart goes out to all of you who are posting here!
I have been dealing with sypmtoms for about 6 months now. My primary care MD didn't have a clue so he sent me to a uro (at my request). The uro did a scope and a IVP and found "nothing". He put me on Microfurantoin and sent me home. That didn't do much for me. My gyno gave me DetrolLA 4mg which has helped, but not eliminated the spasms and the burning. I do to another uro on the 19th.
I don't want to keep going through painful tests in order to get a diagnosis?? Any tips would be appreciated greatly on how to avoid that part!
The worst part is after 3 mos. of abstinence my boyfriend and I had sex and blammo!!! 81hrs later I was nursing my symptoms and laying in bed in fetal position. How can I maintain intimacy when I have this issue??
I am so frustrated, and like all of us here I want my life back!!!
Any advice or kind words are truly appreciated.
Love and light to all
Ronda:pray:

[Sarojini]

:welcome:

Just wanted to welcome you to the boards... and say I'm so sorry you are having so many problems right now! :grouphug:

The pain during and after sex is definitely a bummer... I can definitely sympathize with that! My husband and I are working to maintain an active sex life despite my IC. We find certain positions are better than others (it's trial and error at first, unfortunately). Using lots of lubrication helps too... as suggested by someone on this board, we are using a lube called "Liquid Silk" and it does seem to help quite a bit. I use Pyridium or Urised and an ice pack after sex to reduce post-intercourse urethral burning, too.

Feel free to email me at jen424@earthlink.net if you want to chat at any time.

Hugs,

Jen

[dyno]

Ronda,
Hi, I wanted to welcome you to the boards. It does take time to get a diagnosis sometimes. Hopefully you will find a Dr. soon that will figure out what is going on. It is a diagnosis of elimination by ruling out other conditions, not pleasant at times. We do have some good uros here in Fort Worth and the metroplex.
There are several of us on here in the Metroplex area. In fact there is a new IC support group that will be starting in Fort Worth that I am trying to get details about. So if IC is your problem, you will find plenty of support.

Take this a step at a time and see what happens. We are all here for you.:welcome:

[vm]

Just wanted to welcome you, Walela! :hi:

[kelly McC]

HI and welcome
:hi:
Hope you can get some answers soon.
Sending you prayers and lots of :grouphug:

[Walela]

Thanks to all of you! This is great for starters. I am SO GLAD I am not alone!!!
:grouphug:

[Dixiefireball]

i also wanted to send you out a welcome:welcome: and to let you know your never alone we are here for you we do care.
sending you hugs and prayers
Rhonda:pray: :grouphug: :kiss:

[Nicole in ATL]

Welcome! I have IC and also get UTIs. It's important to get urine cultures done b/c IC can feel like a UTI and a culture can tell if there is bacteria present or not.

I usually get UTIs from sex, but sometimes I get them for no reason. My uro prescribed antibiotics for 6 months to help break the cycle of UTIs. Now I take a low-dose antibiotic after sex. This has really helped me, and I haven't had a UTI since October. I also make sure to pee before and after sex and I rinse well or take a shower afterwards. This helps too.

I hope you find something that works for you. I know having UTIs on top of IC can be miserable. Hang in there and keep working with your uro.

Nicole

[ICNDonna]

:welcome:
I'd just like to add another welcome to the IC Network. There's a great source of information in the Patient Handbook at http://www.ic-network.com/handbook --- You'll find diet information, as well as information on symptoms and diagnosis.

One thing you might do is to put yourself on an IC diet to see if it helps. Some of us do very well just by following the diet.

Warm healing thoughts,
Donna

[Katrina]

:welcome: :welcome:
The other advise on sex is good....I would like to add that resting....staying very still before and after sex to relax the musslces can help a lot....about 15 minutes is good.....


Anyway.....I am thrilled you found us....we are here to help all we can.

Best Wishes,

[gypsyjoy]

Welcome:welcome: We seem to be in the same boat. I have been waiting for a dx for months now. However, my PA is wonderful an she and I both agree that I have all the symptoms and she is treating me for IC. As much as she can until I get into see the URO again I have been waiting for 8 weeks total and have to wait another 3 weeks due to the fact he had to cancel my last appointment. Try the IC diet and most of all no soda, coffee or beer is the only advise I can give. As far as intercourse.........Haven't had it in 18 months IC broke up my last relationship and I haven't had the nerve to try anymore.:(
If you care to one on one there are a lot of us here that you can E- mail. Mine is gypsymamajoy@aol.com:grouphug: Gypsy joy

[Walela]

That is the fear I have, that my relationship will disappear. I have a very loving partner, but I wonder sometimes how long he will have patience with my condition. I am sure there are alternatives to vaginal sex but I still wonder if he will hang in with me. Guess I get to have faith, eh?:pray:

[Dixiefireball]

my doctor gave me a muscle relaxer the other day due to a pulled muscle in my back and i have found it helps relax my bladder also:thumbsup: i also find a low dose of my nerve pills helps and a heating pad i also get many many poss uti infection and i do the same as you pee before and after and shower. then i throw a heating pad on my bladder for a while which is my life saver if its not to late at night i will also take a dmso treatment heparin and marcaine if the burning and cramping doesnt go away in an hour or so or at least eases up if i dont do that that night i will take one the next morning.
sending you hugs and prayers
Rhonda:kiss:

[PikkuMyy]

Hi Rhonda (Walela),

Check the Sex & Romance boards for all sorts of postings and advice on sex. Some examples - muscle relaxer and Pyridium BEFORE sex, so it kicks in before you start.

-Nice hot bath before and/or afterwards to relax your bladder and pelvic muscles.
-heating pad/hot water bottle afterwards
-LOTS of lubricant - we also use Liquid Silk with great results
-relaxing afterwards, concentrating on pelvic muscles
-experiment with various non-vaginal intercourse activities...

Emily

[Walela]

Thank you! Those are great ideas! What nerve pills do you take? I never thought of the muscle relaxers, but it makes sense! AND I wil check out the sex and romance boards.
I am leaving town Friday to care for my elderly parents. Its a 3 hr flight :rolleyes: My Dad has Parkinsons and Mom is totally stressed so off I go....hope it goes well.

[Mrs. T]

::confused: I am new at this. I hope I am doing it right. I have been suffering with what I believe to be IC for many years but have gone undiagnosed. I am now in very bad pain with burning, pressure and urgency. Can't get any sleep at all. Doctors have given me urised to calm the burn but it doesn't work. Also have taken atarax but it seems to make matters worse. Perhaps I am allergic to some ingredient in it. I know it takes time to work but it should not make my symptoms worse. Is there any hope for me?

[Iris]

Hi and welcome, sorry that you are going through so much. I could not take Atarax, it made me very hyper, so my meds were changed. If it were me, I would ask my doc for some other med, and see if that helps. I know it takes a while to find the right combination of meds to help you with your IC, I know it took a while for me, and I am sure you will find plenty of the other gals, had same experiences. Let us know how you are doing, and are following the IC diet at all, that does help quite a bit. Keep us posted and welcome once again to the IC family, Iris.:hi: :grouphug:

[curlycue]

:hi:

Welcome to the ICN. I truely hope that you do not have IC and that the URO tells you that it has all been a mix up, but if you do have it we are always here to help in any way we can and chat about our experiences with this dieseas. I have learned MORE from this site than any DR or URO has ever told me. Bless Jill for giving us this Wonderful Place to share out stories and thoughts.
Ruth