Major flare, ER was clueless. Not sure what to do

[melissalanette]

I am MAD and just need to vent to people who 'get' what I am so angry about. So I am having a REALLY hard time with my IC and need a rescue installation, but my urogyn won't see me unless I pay $600. So I am pretty desperate and miserable and decide to go to the hospital last night/this morning. I chose to just lay down and wait it out last night because at least they can call my dr this morning if I went in and they needed to clarify stuff.

So I called 6 hospitals in the area (one of them was two hours away) and NONE of them knew what IC was and they refused to do the installation. I offered to bring pamphlets and detailed info on what goes into the bladder cocktail but they refused and said it sounds like I have a UTI. GRRRR.

Now I am just sitting here all alone, drinking my baking soda water that DOESN'T help wondering why I am so damn special. My normal sentiment to healthcare people who piss me off is 'I hope I die so you get blamed', but I don't even think they'd feel bad if that were to happen.

I am at a loss as to what to do. I have the newbie kit from the site and I plan on cooking straight from the cookbook from here on out. But with no meds and no relief and CLUELESS doctors...I don't know what else to do

[Mothergoose]

i am sorry to read you are having such a hard time.

i can't do much but empathsize with you.

mg

[bubbe1]

major flare and clueless

Melissa,
I'm so sorry that you're having such a hard time.
Is there another doctor that you could see besides your Urogyn? Maybe someone who won't charge you $600.00 for a second opinon type visit?
Have you tried some of the coping with flares, strategies from this site, besides the baking soda? If you scroll through the forums you'll find lots of suggestions, maybe some will help bit.
As MG said, I wish I had more to offer, but all I can do is say I hope you can find something to help.
Laurie

[melissalanette]

Thanks! I have been drinking baking soda water and taking tums as needed. I also have vicodin but that doesn't help at all. I have the IC cookbook that I will be using from here on out. I've been relaxing and trying to stay calm but it's so hard when I can't even get the help that I need.

[earthlady]

You didn't mention if you have been using a heating pad or moist heat for temporary relief. Baking soda never helped me either, and Vicodin barely took the edge off. I think the heating pad and camomile tea worked better. At least it calmed the spasms down. A small dose of Ativan saved me a few times. Is it possible your County hospital could give you a referral to someone since the money ($600.00) is an issue?

[melissalanette]

I do have a heating pad and some chammomile tea I will be trying soon I have an appt with my PCP on the 18th and the company that owns the clinic and many others in the area has offered me a financial aid program. Since I am unemployed I qualify for free healthcare through them for 8 months at a time, then I will have to re-apply every 8 months. So when I see my PCP he will refer me to a urologist in the same company. The reason I was seeing the specialist is because she is the best in Oregon and is the most knowledgeable, but since I can't afford her treatments, I have to see a basic urologist in my hometown, but he should be able to help me just the same!

[Snowden1]

How much Vicodin are you taking? They maybe giving you too little. I would ask to take more. If you go to ER they will at least give you a shot of Morphine or Diluadid if your pain is severe. I know I have been there, often where the pain is so bad you will do anything for relief. If you stop the pain cycle for a bit maybe that will help short term.

[rpinion1]

i find that when im in major pain i keep to myself otherwise my mom or my bf freaks out and drags me to the ER, and frankly its a waste of money because they treat me like im just some whiny bimbo with an infection and when i tell them its not an infection it never is they test me anyway and cost me money i dont have....; oh and surprise!..... i NEVER have an ifection they just tell me to leave that theres nothing they can do oh and on my way out they always make sure they give me the 2,000 dollar bill..... a waste of my time and money

[Snowden1]

Sorry you have a bad ER there. Maybe try another or call your doctor to see if you can take some more pain medication. Just throwing out some suggestions. Have you tried a TEN's unit? This does help bring the pain down sometimes for me as well as baking soda (sometimes).

[Julie B]

Just for future use..........when I had to visit an unfamiliar ER a few years ago I gave them them a pamphlet about IC. The PA actually called ICA (I am sure Jill would take calls here also) and learned what he could in a couple of minutes.

In your case, have you thought of writing letters to the various hospitals telling them of your dilemma and that you didn't get help? You might be surprised at the answers you get back!

Finally, most people find if they use the baking soda for more than a couple of days that it can begin to backfire. It can actually cause a swing in urine pH in the other direction which can cause just as much pain in an IC patient.

I sure hope you get help soon......sending you understanding hugs!!!

[Bekah79]

I'm sorry you had such a rough time getting help. Julie's idea about a pamplet is great idea. I hope you start feeling better soon. The IC diet has really helped me a lot.

Keep The Faith

[Thingone]

I send a big virtual hug

As one who has many chronic pelvic conditions, I have felt like I have been through a Gyn and Uro factories. I can relate. Have you thought about looking for a pelvic pain specialist. I am really fortunate to have finally found a doctor who understands pelvic pain conditions and IC. I recently read Secret Suffering. I highly recommend this book. Also have you tried Prelief?

Hugs