Not diagnosed yet

[adfmom03]

I have not been diagnosed with IC yet. I have been experiencing symptoms since January 2005. At first they would come and go with my cycle, usually afew days a month I would have serious pain, "spasms". But, for the last 4 months my pain has been continuous. I usually have a dull ache or burning feeling all the time. However the sharp, stabbing pain is what is so difficult to deal with.
I am a mother of three and all I want to do is lay in bed to help relive the pain. I'm living on Tylenol and Vicodin to help with the pain, which actually is no help. I take a lot of hot baths to help relax. I am also a full-time student and part-time worker at a hotel. I have a very busy life, but I am so depressed by the pain I don't know what to do.
I have called my OB/Gyno frequently about the pain. I was prescribed antibiotics about a month ago for a UTI. I have had them for about 15 years. The antibotics didn't take the pain away. I went back to my doctor last week about the pain, concerned it might be endometriosis. As he examined me he didn't think it was "Endo" but IC. He felt my uterus, and Ididn't have any pain. He then felt my bladder and the pain was so bad I wanted to punch him. Because of this he thought I was more likely to have IC. He recommended I see a urologist for this. I had never even heard of this condition before. I have an appointment scheduled for October. Waiting is going to drive nuts.
The pain has gotten so much more severe in the last month. I have to go to the bathroom all the time, and not very much. I hurts so bad to go, I hate going. I can't sleep through the night, because I'm constantly getting up to use the bathroom. I'm depressed and have no energy. The "spasms" are the worst, they actually take my breathe away and if I'm walking when they hit I have to stop and sit down. There are many times I just lay in bed and cry because the pain is so bad.
Like I said in the beginning I haven't been diagnosed, but I have all the sypmtoms. Can someone help and let me know if there is something I can do to relieve the pain since I am new to all of this.

Thanks :confused: :flower:

[traceann]

Hello and :welcome:, glad you found us. Wow, reading your story reminded me of mine! I went through almost 9 months of on again, off again troubles. Then finally I decided to talk to my gyno when the spasm feelings became too much to take. He rx'd me Ditropan. Sometimes felt like I had to "bear down" when I went to the bathroom, it was awful. The Ditropan helped for quite awhile with that, I had forgotten what it felt like to urinate without pain! It was crazy. Then a nasty real UTI kicked my bladder into gear. At that point I was now given Elmiron in addition to my Ditropan. Then, a couple weeks later, we added in hydroxyzine. And it's been getting better ever since.

One of the biggest things you can try is the IC Diet. It's been a god-send for most of us. It's very boring and frustrating in the beginning, but well worth it as that phase doesn't last forever, just feels like it! :headbang: But basically it's cutting out all aggrivating foods to the bladder for a few weeks to help it get calmed down. Then you start adding in foods one at a time, to see if it's a "trigger food" for you. We are all different, what one can eat with no problem, another can't touch. There's a list here on the site, I will give you the link....

http://www.ic-network.com/handbook/diet.html

What I did, as was recommended to me, was to eat solely out of the "usually ok list" for the first 3-4 weeks. I felt some relief the first week, but it took a few more to see a big difference. Then, you start adding in foods from the "may be ok" list, one at a time, and if you have no increase in symptoms for 2-3 days after, it's a keeper! If you have an increase, it goes to the no-no list. I retried things at a later date, and if it still caused me problems, it went on permanent no-no list. Thene there is the "usually problematic" list, known offenders, for lack of a better term. :biglaugh: It's pretty general, things that IC-ers have reported over and over again as pain/frequency/urgency triggers. There are quite a few things on that list that I have discovered I can have with no problems. But, it's trial and error, and I tell you, very worth it!! It's slow going, but it's nice to finally find out that "mystery" of why you hurt sometimes and why you don't sometimes. It's nice to find out that "oh, it's that food that increases all the symptoms!" and then know to avoid it. :) It's pretty restrictive in the beginning, can't tell you how many times I wanted to just give it up, determined that it wasn't working, blah blah blah. I just needed to be patient, ugh. Nothing quick with IC except for the bladder deciding act up!! :biglaugh:

Here is also a link to the Patient Handbook, it has tons of info there on treatments, coping, tests, etc. And these boards are the best, I learned so much from all these wonderful caring people, it's made such a difference in my life and my first few months of coming to grips with IC.

http://www.ic-network.com/handbook/

There are some self-helps you can try. I love my heating pad, I think most of us here have a very special relationship with them, :biglaugh: But heat can work wonders on the bladder and the spasms! Cold sometimes works too, try a cold pack, see what works best for you, but do try. Also, there are over-the-counter bladder analgesics, a couple are Uristat or AZO Standard. They are the OTC version of Pyridium.(but it does make your urine orange, and can stain undies) It's a med you can take short-term to help numb up the bladder and urethra to help with the pain, frequency and urgency. Not to be used too long though, usually recommended only to take a couple days, I did though talk to my doc about dosing, and he helped me fiugre out what was safe for me. Also, if bladder is acting up, a tsp of baking soda in a big glass of water can help. It tastes yucky, but was a real life-saver for me! Be careful though if you have salt sensitive health conditions. Tums can work in the same manner.

I am sure you will get loads of ideas, and helps, these people are great! I hope I helped a little, and hopefully you will be feeling better soon. The beginning is the worst, the diagnosis time. Usually you are feeling rotten and waiting to find out. Hopefully, you will get a firm diagnosis -- whatever it may be -- and get the meds to help get you feeling good again!!

Hugs!

[ICNDonna]

I'm glad you found us. I'm sorry it's taking so long to get an appointment with a urologist. You might give them a call and ask if they can work you in earlier because you are in pain.

You've already been given some excellent advice and I won't repeat it. The diet is most important and I do encourage you to give it a try.

Another over-the-counter remedy that might help is benadryl (I buy generic). It can help with sleep.

I use Tums on the advice of my doctor. It can help with IC symptoms and also is an excellent source of the calcium we all need.

Sending healing thoughts,
Donna

[Sarojini]

:welcome: to the ICN! We are glad to have you here, and I'm glad you found us. There is a wealth of information on this site. You've been given some great advice already, so I won't repeat it, but I just wanted to let you know that I too have been through the kind of pain you describe, and you are not alone. I hope the urologist is able to help!!!

[VickiB]

Hi! Glad to have you join us!

I just wanted to add one more welcome and give another "thumbs up" for the IC diet. -It was the one best thing I did to get my symptoms calmed down.

As has been said, the time before diagnosis is the worst! Hang in there. If it is IC, I want you to know that most of us do go on to feeling much, much better with treatment.

Vicki

[karen10300]

Just wanted to say Hi and sorry about your awful pain. I'm sure alot of us can relate to your pain and having to wait so long for a doctor's appointment. I know that's how it was for me. You may try calling the doctor's office and ask them if they have a call list they use in case they get a cancellation. I told my doctors office I would come any time they had a cancellation. Left my home phone number, cell number, work number. I was so desperate it's a wonder I didn't leave them a number for everyone I knew. Then I would call them every few days just to inquire if there had been any cancellations and to remind them how much pain I was in. I ended up getting in about a month ahead of my origanally scheduled date. The morning they called and say they had a cancellation I called my work and told them I would be late and they could fire me or whatever but that I was going to this appointment. I was desperate at the time and my only thought was to get help and if I had to find a new job so be it. Work was actually very good about it. Anyways, enough of my rambling. Try following the great advice you have already been given and keep calling your doctors office and see if that might get things moved up for you.