Feeling very hopeless

[Dessica]

Hi I am new to the message board. I am 28 years old, mother to 5 (three by adoption) and currently trying to figure out what is wrong with me. In May of 2005 I had my first UTI ever, it came on very fast and I was peeing blood. Took prydium and atibiodics and cleared up right away. In the beginning of October, same thing happened, took medicine and was better right away. Two weeks after I wasn't able to sleep one night because of pressure and feeling like I had to go to the bathroom. This progressed into full fledged pain and pressure. Went to Urologist, he said could be affter affects of UTI and gave me stonger pyrdium, didn't help , went to family practice Dr. on call she did a pelvic exam and vaginal ultrasound said both was normal. Gave me Percocet. That helped, but not completely. My urine was cultured and negative. Urologist scheduled me for the Kidney/bladder Xray exam, came back normal. The pain just suddenly went away on October 30th and I had relief for ten days, now the pain is back and I am on percocet, waiting to see Urologist tomorrow. I saw my gyno today and while he said he could do a scope to look at the inside of my uterus and tubes, he would rather wait to see what Urlogist does first. My mom had a hysterectomy at my age due to her Uterus falling and puttting pressure on. My gyno said my uterus has fallen a little bit, but shouldn't be giving me this amount of pain. I have started the low acidic diet, already lost five lbs, because I'm scared to eat anything. I am scared and anxious that is IC and so badly want it to be something else. My children need a mother, not a drugged up crybaby. I guess I am looking at any advice on tests to have and what to do. My pain is more pressure than anything else, it feels like the muscle that allows you to pee, is always tight or spasms. I have to conciously let that muscle relax but then it tightens back up, it also feels like something is sitting on my bladder, I do feel like I have to go the bathroom alot, normally I go very seldom. But I have no relief when I do go. I think I'll most likely have the potassium test, is that a good thing and if it is not painful does that mean I don't have IC or if it is painful does that mean for sure I have IC or could it still be something else. I want to find out what this is!!! Any advice would be appreciated. I live in Minnesota if anyone knows of a specialist. Thanks Dessica

[ladybug23]

Hi hun,
I had the same feelings. I'm 23 and the symptoms came on suddenly. I've never had a UTI so I just figured that's what it was, but all my cultures were negative. Like you, I was hoping it was anything other than IC. Your symptoms sound a lot like mine when it first started. That's actually how I kept describing it to docs and they looked at me weird when I said the part about the sphincter (the part that lets you pee) feeling pressure etc. I haven't had the potassium test so I can't inform you on that sorry. Feel free to message me if you need to talk. I'm new with this too so I don't know how much help I'll be, but I'll try. Wishin you the best.

[AnayisNin]

You have come to the right place. I just started posting and am in the discovery stage as well. these people are great and have the best advice.

My first concern for you is that they are putting you on percocet and pyridium, which are just pain killers. You should be trying some strong antibiotics at this point in conjuction with pain killers.

I have the same pressure and spasms that you have. I actually just got back from the doctor who told me that those muscles of mine actually are in spasm! The result is that I (and possibly you) aren't releasing all of your urine from you bladder and little bits of infected urine are staying in your bladder...reinfecting you.

I know that you're in a lot of pain...it's the worst. There are a few things you can do to relieve them yourself while you're "discovering"

When your urine is burning, take a mixture of baking soda and warm to hot water and run it over your urethra after you pee.

Use a hot water bottle or take a hot shower...heat really helps

Try taking Prelief (sold over the counter) this cuts back on acidity on food. You want to stay healthy and strong...not losing weight!

When you feel like you have to go, drink MORE water...sometimes this dilutes your urine and makes the feeling go away.

I would highly recommend you try and find a uro-gynecologist. This is a very specialized doctors that has a good understanding of both parts of you.

I hope this helps!
Amanda

[Katrina]

There is no one definative test for IC. A negative result from the Potassium tet (no pain or no severe reaction that is different from the water) is negative for IC...but doesn't mean you don't have IC...means it is less likely that you do.

I realize that IC is a scary diagnosis but there is a lot of treatment and with the knowledge from this board we can help you get good treatment and look into all apsects of what is going on. If you do have IC...you won't be a lone and there is a lot of treatment...most people with IC live normal lives.

To me it sounds like you could have Pelvic Floor Dysfunction as part of your problem.

http://ic-network.com one of the links on the left side is to a international physcian listing...from there you can look into the ones of your state.

Don't worry...things will get better :grouphug:

[dyno]

Hi and welcome to the ICN... It is very normal to feel scared about this if you don't know what is going on. First I am going to give you a link to the Handbook...http://www.ic-network.com/ You will find a lot of info in there on treatments and diet.

I think as far as tests, discuss this with your Dr. and see what options he gives you. You may also want to explore PFD...Pelvic Floor Dsyfunction... that could be a cause of the tight muscles you talk about.

Lastly, I want to tell you that I have been diagnosed for almost 31 years... there is life with this illness and if you do indeed have IC, once you get on a treatment plan that works, things will be a lot better. It takes time and experimenting. Try the diet, which it sounds like you are, that is a big help to many of us.

Good luck and know that we are here to answer what questions we can.

[dyno]

Looks like Katrina and I were posting at the same time....lol

[ladybug23]

I've got a question...how do you know if you have PFD. I talked to my gyno and uro and they don't think that's part of my problem tho the uro wasn't really sure what i was talking about and my gyno just blamed it on the IC. Neither really did a test for it or anything. What are the typical symptoms that are associated with if being connected to PDF. I tend to only have pain when I'm having a flare and the pain is in the urethral/vaginal area not really the bladder area. My symptoms also began a little after I began having sex so it makes me wonder if it's connected to the pelvic floor muscles. Even before this started it used to take me a little while for the stream to start (not very long but there was a slight pause sometimes). I already did the urodynamics test and they said that was normal so it's not strictures or anything, but I'm still questioning the PDF thing. Is it well enough known or do most docs thing it's only with the elderly that have the opposite problem of the muscles not contracting well?