Overwhelmed by all this....

**RAS6** · 08-09-2006, 04:58 AM

Hi everyone!
I am so glad to have found this site! Just a quick history on me: My name is Rachel and I am a 24 year old female who has been having intense pelvic pain on the left side ever since I had an IUD inserted last July. After having the IUD removed in February I felt great, but that only lasted a few months. By April I was using the bathroom alot; my husband joked that it was like living with a pregnant woman, but I was not pregnant. After doing a few tests that came back negative, my doctor just sent me home. Then in June the pain started again. My doctor sent me to the OB/GYN for ANOTHER ultrasound (which was normal again). But at least he listened. When he heard about my frequent trips to the bathroom (20 x's or more a day, including 6-8 x's at night) he did more urine tests and sent me to a Urologist. My OBGYN was sure I had kidney stones: they found traces of crystals in my sample. I waited for two horrible pain filled weeks to see the urologist, and now he is sure I have IC. I have already had a rescue treatment (that was yesterday), but it only helped dull the pain; it made my bathroom trips increase and now my urethra itches and burns! In the mean time, we haven't ruled out everything yet b/c my insurance company doesn't want to cover a ct-scan and the Urologist can't get me in for the Urodynamic evals or the Cystoscopy untill the end of September (even though they have 3 offices and 5 Doctors). In the mean time, I had the rescue treatment and left the office with a stack of pamphlets about IC. I am on no medicine except tylenol and Ibruprofen (I am fighting painkillers!) and my insurance won't cover the medication for bladder spasms. While I am happy to be getting closer to answers, I am also feeling so down and overwhelmed by all of this. I am definately not used to being told I am sick, then being told I have to wait 5 or 6 more weeks just to get an accurate diagnosis! I honestly thought they would just say I had a bad infection or kidneystone, not a chronic condition. My husband and family are trying to be supportive, but it doesn't seem as grave to them I suppose. I just finished college and was getting ready to find a full time job in my field as a teacher's assitant. Right now I don't think I could do the job between the pain and potty visits. Just taking care of my girls and showing up to my very part time job has sapped all my energy.
Anyway, being able to vent here felt great and any thoughts or similar experiences are greatly appreciated!

Thanks!

**armslee** · 08-09-2006, 05:29 AM

Hi Ras and welcome to the ICN Board

This is a great place to come and talk to others about your symptoms, learn information and just have a place to get things off your chest!

Things do seem very overwhelming at first. We have all been there and for me, reading and learning as much as I could really helped me get a grip on things. Unfortunately you will learn that things work very slowly in the medical field as far as testing and insurance go. Also once you do start taking medications, sometimes they too take a while before you really notice any changes.

Please try not to get too discouraged. Read the Patient Handbook that is available free off this website. It is an invaluable tool to learning the ins and outs of IC.

Good luck and again welcome to our circle!

**plaedes** · 08-11-2006, 04:05 AM

Hello Rachel and Welcome

. This is definately a good place to research and vent. I just wanted to say that I sincerly hope you can get your symptoms under control soon. It took me over a year to get my pain level to even a managable level. The biggest reason for this I think is because for the first several months I was going through a study both to see if Elmiron was an effective treatment and also to see if the Potassium test was an effective test method. In this time I did not know about this web site, nor did I know about the IC diet. I felt horrible. There were days when it hurt just to stand up straight. I fell into this trap of feeling horrible and eating "quick food" so that I didn't have to spend a long time standing and cooking. I was eating canned soups, ravioli, and still drinking coffee. I also ate pizza quiet a bit. I know better than to eat any of those things now, but education is the biggest part of the problem. I'm glad you have your diagnosis....even though it isn't something I would wish on my worst enemy it is a place to start. I am 29 and I was diagnoses 4 years ago. This last year has actually been pretty good where IC is concerned. I have even managed to eat Lasagna, Chicken Parmagiana, and Manicotti and had one cup of coffee this year. I take 3 prelief before eating and sometimes take Pyridium for two days during. I only eat something like this when it has been a long time since I had any symptoms. I'm not saying this is good for anyone to do, but you can only crave marinara sauce for so long before you have to give in

In the mean time of waiting on your Dr. appointment you might try Prodium or Azo Standard as a numbing agent for your bladder and Prelief helps take acid out of food. As for the rest of it...DON'T LET IT GET YOU DOWN. There are many great women and resources on this site to help you along the way. As for family support, you have to educate them and you have to discuss your symptoms. It is sometimes gross and embarrassing to talk about, but if you shut people out it lets their mind wonder. You have to let them know what is going on with you so that they don't jump to conclusions in regards to how you feel about them. I hope some of this helps and I'll go now because I feel like I'm just rambling. Take Care, Good Luck and get a good heating pad!
Kelley

**Jo Jo** · 08-11-2006, 04:34 AM

Hi Rachel
You are so young my heart goes out to you I have a daughter your age . Please try and stay calm there is help out there for you. If you are able to get to New York there are great doctors in that area that are very knowledgable to help us with IC. There is support out there and yes I agree you have to educate yourself like I have it really helps.

Lots of hugs
Jo Jo

vm · 08-11-2006, 06:02 AM

So, so glad you found us. It IS overwhelming, isn't it? I remember that so clearly - not knowing what was going on, then thinking it might be one thing, then another, then finding out it was IC and then what do I do????

It gets better. Promise. And you are so in the right place for it to get better. Check out the ICN's online Patient Handbook and just hang around the boards to absorb more information about IC, its treatment, and little self-help tips.

Have you tried the IC diet yet? It can seem very daunting in the beginning, but once you get started it gets simpler --- and it has helped many of us with our symptoms!

Hang in there, OK?

**glassd18** · 08-11-2006, 06:57 AM

Welcome Rachel, This is a great place to be if you have IC, and you will find a ton of support, information, and most importantly HOPE!!!!

**stacyY** · 08-11-2006, 04:13 PM

Hi Rachel;
My name is Stacy, Im 33 years old live in Michigan. Well I just wanted to say welcome to the site and I now how you feel. I just found out for my self that i had IC this last Feb, 2006. When for hte last 10 years i had been being mistreaded and misdiagnosed with endometriosis. But finnaly going to the right Ob/gyn and having her send me the urologist. got me ont eh right track. It is a very long and frustrating road. But once you get on the right track things will settle down for you.
One thing i really recomend for you that you can get over the counter that my doctor told me to take was the Pelief, it is also advertised on this site. It helps a lot to calm down the bladder so you dont go as much. after a few months on it for me i have not had to take it so often. Also by watching what you eat, some foods which had a lotof acid in them can triger your bladder also. things like orange juice is deffinatly one thing i can not drink any more. Also if you drink coffee, i belive thats another one which is hard on the bladder, some things which you never think of can set it of.
I can totaly relate to how you feel about working. and issues with insurance. I had no insurance. And my doctor had to me go to the FIA(family Independance agency), there I did get some help. I did have to go on medical leave from work though, I was off from work a good 6 months and went threw 3 differant surgerys before getting the right diagonises, but at least i finaly have the right one now. ANd also I found that by making min. money i can stay on the insurance program threw the state. Its not soemthing i am pround to have to do, but at least at this time my medications and doctor and any surgery needed are covered till soemthing else can be figured out.
I was missing so much work, before i stopped working i was missing 2-3 weeks out of a month due to the pain. I was 31 at the time. I was very depressed and stressed. And belive me, stress only makes the condition worse. So try hard to remain aas calm as you can, take all the brakes you need and rest when possible. I was rereading threw the site tonight and they state soemthing which makes perfect since. with this condition we tend to push our selves. And think we will not like this Ic get the best of us, and we just keep pushing till we are are in such a fair up and in so much pain. But we need to think of our bladder when we are in pain as if it was a broken arm, we would not use a broken arm over and over again. and we must remember that our bladders never get to stop being used, but we must remember when the singles are there we must slow down and rest, otherwise we will just make matters much worse.
Its a very very hard thing to do. I had acculy been feeling better for the last 2 months, and started doing more then i should.I forget about the pain cos it was not there for a while,But then i started to exercise again, doing abdominal crunches-which i do not recomend ever again doing unless ur doctor says it is ok- and with in 3 days i started haveing problems going tot he bathroom again and pain started up again, and well its been 3 weeks now and i am still having problems. from 3 days of exercising.
So i deffinalty can relate. I am also a teachers assitant. And i want to play more with the kids, and its hard cos i just cant do all i want. and my hrs are so limmited, and the kids ask are you coming back latter to play, and i have to say no. So it is frustrating. I am not married nor do i have kids. SO i jsut cant imagin how much harder life would be with that added stress. Plus working. plus dealing with all the other stuff that we have to go threw. I really feel for you.
Please remember any time you feel stressed or have questions come here and let it out cos there is always someone here, and someone will always resond to you, and soemtimes it just helps to get all your thoughts out of your head and then you feel so much better.
Please take care and try not to worry to much things will work out for you and it may take time but it sounds that you have a good doctor who is on the right track, which is a great thing.
take care dear.
Best wishes
stacy

**mare mare** · 08-12-2006, 02:25 AM

Hi Ras6 and

I know how overwelming it can be. IC is a disease and it has changed my life mentally and physically! It sound like you're in the early part of the journey and you have good doctors.(The waiting is sooo stressful!) Everyone is different as far as treatments go, so hang in there and time will tell what is best for your body. The IC diet is a great place to start! Prelief too. Hot baths if you have time to soak! Try to drink water only!
There are many wonderful people here!! Come vent anytime!!!!

Mare Mare

**RAS6** · 08-17-2006, 03:15 AM

I have had such a busy week between appointments, sending out resumes and getting my daughter ready to go back to school that I hadn't checked in since I posted. I am so thrilled to find all the helpful messages! WOW! It really picked me up today and I needed that (the pain is BAD today). Quick update: I finally had my CT scan approved and I had it yesterday (definately not fun... but at least it is over!)
My pain has really stumped me, I have been following the IC diet (and it is really bland right now!) but I still have days with little to no pain like on Tuesday and days where the pain is TERRIBLE (like today).
Dealing with my Doctor's has been rough. It took me five phone calls to get my Doctor to call me in a prescription for pain meds, though he seaid he would last week and I turned him down. He kept having a nurse call me back to tell me to get a rescue treatment. That ment a two hour drive for 3 hours relief, and my last one left me incontinent for several hours. All I wanted was double Ibruprofen and he gave me Vicadon (which made no sense). Then they faxed an unsigned prescription to the hospital so I got to wait 30minutes in a hospital gown on the CT table. Now that I think about it, it's kind of funny, but wasn't yesterday.
Oh, Quick question: does anyone know why the pain can be in different place? For me it always starts on my lower left hand side, but lately my back hurts and I have period-like cramps as well. Just wondered why the pain can spread like that.
Thanks again everyone and I will check back soon!

***Sarojini*** · 08-17-2006, 07:11 AM

Hey, and

You've gotten some great advice about the handbook, diet, and hanging in there, so I won't repeat it

However, I did notice that you are taking ibuprofen for your IC pain. Ibuprofen can be pretty irritating to many IC bladders, so you might want to try to manage without it for a while, and definitely DON'T increase the amount you take... just use the Tylenol for a few days. You may find improvement -- some ICers do

The Vicodin may help as well; try it... there is no shame in taking a pain pill now and again because you need it to function better!

As far as pain spreading around, well... there are a lot of things happening. Some of it is the phenomenon of "referred pain" -- when nerves are close together, pain messages can get a little jumbled, and your body gets confused and thinks something hurts when it's really something else. Like, it thinks your back hurts when it's really your bladder.

And some has to do with how tight your pelvic floor is at the time, how many bladder spasms you are having, etc. Lots of factors!!

**ShePurzz** · 08-17-2006, 07:22 AM

Hi and Welcome to the IC Forum!

I am sure you will find a lot of help and support here! We have all gone through situations that are unique, yet similar in many ways.

Mary

**irishnan3** · 08-23-2006, 06:13 AM

Ras6 Your story is all to familar. I to have the left sided pain. I was dx in late may of this year, after suffering for over a year with severe left flank pain and removal of my one ovary. Which now I regret having the surgery. But this site is wonderful for information. Don't be afraid to go on some pain meds. They are important for you well being. Get on the IC diet it helps/hard at time but it helps. Are you seeing a uro/gyn or just a Uro. Try not to get down, we are all right here for you. Good Luck

**icsonja** · 08-23-2006, 09:04 AM

Welcome Rachel

It is nice too have you here though I wish we didnt need any support group because we have foung a cure, but until then.this is a safe place to let out all your feelings and questions.....believe me nothing you can ask will make anyone here blush...we have heard it all and experienced it all too!!
In my opinion yout left sides pain and pain that moves around could be related to some of the other syndroms that ICer commonly get such as IBS (irritable bowel syndrom) or PFD (pelvic floor dysfunction)they all cause pain in those areas.Dont be shy about pain relief, if you let it get really out of control it is just that much harder to get a handle on,we have a painful illness that for most reqires some form of pain managment. So until there is a cure (my nightly prayer) we have to treat symptoms and a huge one is pain, I have 3 kids, and it is worse for us all if I dont take my pain meds than if I do.
Read,read,read, be prepared when you go see the urologist, bring a list of questions and if he tells you something you dont understand, speak up. Part of having IC is be your own advocate, being in control of what treatments you will get, understanding the medications, the diet, etc all will help you take back some control.
And when all else fails come on here and vent your heart out!!!

Hang in there the waiting can be the worst part.
Your IC friend,
Sonja

**karebear** · 08-29-2006, 05:48 AM

Hi!
I am new to the site and just noticed your posting. I just wanted to say that it is really difficult to deal with IC. It can seem to completely overwhelm and discourage you when you least expect it. I am sorry you are having such a difficult time with your doctor. I had a TERRIBLE doctor for 3 years before moving to the Bay area and finding a doc that actually cares and listens. I am 26 and for me the most frustrating part of IC is realizing that this is a long term thing. Learning how to not stress out has been the hardest obstacle for me to overcome because the disease tends to make us more high strung and irritable which in turn increases the stress level. It is SOOO important to rest your body and listen to your bladder. With kids that can be very difficult. They don't always understand why you have to lie down but you need to! It really helps! If you ever want to talk feel free to email me!

Good luck and you will be in my prayers!

**ShePurzz** · 08-29-2006, 07:27 AM

Originally Posted by karebear

Hi!
I am new to the site and just noticed your posting. I just wanted to say that it is really difficult to deal with IC. It can seem to completely overwhelm and discourage you when you least expect it.

I am 26 and for me the most frustrating part of IC is realizing that this is a long term thing.

Hugs Karebear -- I hope you continue to do the good things you are doing like not letting yourself stress over this disease -- that is certainly one thing that you can work to keep at bay.

I also hope that you find the sight to help you too -- Be well and God Bless!!!

Mary