In desperte need of help!

[MissGlass]

Hey everyone, it's nice to meet you. My name is Nicole, i am 23. For the last 6 months i have been dealing with alot of medical issues with no answer. I've lost my job, i'm about to be evicted and i'm on the edge of breaking up w/ my boyfriend of 6 years because of all of it. I'm losing my mind. I will try to sum up all of whats been going on hopefully you guys will have some sound advice. I have been having bladder/kidney infections (that's aren't really infections when i pee in the cup there is blood and pus but when they take a catheder sample -which is the most painful thing in the world- it comes back clean?), i have severe bladder/pelvic pain, its horribly hard to start peeing and only little bits come out, i feel like i pee 10x more then i drink, i have right flank pain, fatigue and some days i can barely walk my knees hurt so bad. I have had a cysto which came back fine and a exploratory lap looking for endo which was fine as well. I never get my periods never have since i was 12. I get it once a year maybe. I have had hormone and thyroid testing which is fine. I have had every test under the sun and i'm fine apparently. I have had ctsans done showing cysts on overies, kidneys, liver, muscles and knees. but apparently the doctors think it's normal and not a cause for pain. My bladder aches every moment. I am seriously at my wits end, i actually had a doc say well this just might all be in your head, you might have sommetization disorder. excuse me? i have been taking vicidon daily the only thing that helps but now i'm being labeld as an addict, even my bf told me to get treatment bc theres nothing wrong with me. a doctor said i might have IC and gave me elmiron , which i'm worried to take bc of the hair loss. but she dosen't think it requires pain meds or any further treatment if i MIGHT have it.... please help

[VickiB]

I'm so sorry you're going thorough this! How awful!

I'm wondering, in all the tests you've had, have they tested for IC? Like a potassium sensitivity test, or a cystoscopy with hydrodistension?

The doctor who said that you could have IC and gave you the Elmiron may be on the right track. From your description it seems to fit. And being told it's all in your head after the usual culprits for bladder symptoms are ruled out isn't totally unusual for those with IC. I've been told that as well as plenty of other people here at ICN. It does sound a bit like she gave you Elmiron and kind of washed her hands of you though? There are other things that could be tried along with that, quite commonly an antihistimine and antidepressant. Also, many of us find diet to make a huge difference in the severity of our symptoms. You can read about diet here: http://www.ic-network.com/diet/ There's a link to a diet cheatsheet on that page which I found very helpful.

They say only a very small portion of people who take Elmiron experience hair loss. I took it for 2 years and didn't have any loss. You should know Elmiron can take some time before seeing improvement though.

My doctor will not prescribe pain medication either. Obviously doesn't have a clue as to how painful it can be! I resort to the over the counter meds like AZO or Uristat when I just can't take the pain any more. These meds help, but are not meant for long term use.

Again, I'm so sorry you're having to deal with all of this and I hope you find some relief soon!

Vicki

[bamagirl]

Maybe you need to go to another urologist for a second opinion. There is a test that can be done to determine if you have IC. I would tell the urologist that you think you might have IC and would like him to look inside your bladder and do the test that would determine whether you have IC or not. Your best bet would be to find a uro/gyno. The Vicodin could be causing you to have more trouble urinating. I know that pain medicines sometimes cause a person to have trouble going. I have that problem when I take certain pain medications. I hate that a doctor told you it is all in your head. With the stress that you are under your bladder could also be reacting to that. Stress can cause the bladder to act up. I am so sorry for you with all that you are going through right now. One thing I do when my bladder is flaring is to sit in a very warm bath. It seems to help calm the bladder spasms.

On another note you might want to wait on making any big decisions about breaking up with your boyfriend. It is never a good idea to make those kind of decisions when you are going through a lot. You might do something that you will later regret. Stress can cause us to make irrational decisions. Since you have been together for 6 years I would not make any rash decisions right now. Just my opinion. I will be praying for you to feel better. I have had IC for 20 years now so if you have any questions I will answer them the best that I can.

Hugs and prayers,
Kristi

[SharonA]

:welcome: to the IC Network...:)

I am so sorry you are going through all of this and not being taken seriously. It never helps to hear that doctors think this is all in our heads. How in the world could anyone imagine this much pain? I hope you are able to find a doctor who has experience with IC and its symptoms.

[MissGlass]

i did have a cysto with the hydro and everything was fine. i was wondering if you guys had to have more than one to be diagnoised and any advice on getting a doctor to listen to me and help me with pain and work with me on finding a diagnosis every doc seems to wash their hands of this and it's frustrating

[jenjen05]

Don't let anyone call you an addict, first of all. You take Vicodin because you are in PAIN. If someone doesn't believe you, tell them to ..... I'm 24 and my IC has destroyed my life. Vicodin allows me to live. If someone called me an addict, they just simply would not be welcome in my life anymore. Period. May I suggest buying "Please Understand - The Interstitial Cystitis Guide for Partners" from the ICN Shop. My boyfriend cried when he read it because while he was already somewhat sympathetic, he had no idea what I was actually feeling until he read it.

Is your pain constant or do you notice if its cyclical with your period at all as far as ups and downs of pain? I ask because you mentioned cysts, and my IC pain actually gets worse the week before my period. I had a transvaginal ultrasound and I had a giant cyst behind my bladder pushing against it in what my gyno called my "cul-de-sac." Could you possibly be growing cysts at the height of your pain and then they pop and go away for a bit and then grow again? This is the cycle I'm stuck in. And I'm told there's nothing to be done about it.

MissGlass, I just want to tell you that even with the testing you've had done... and even with your passes... you still probably have IC. You would just be labeled as Atypical Interstitial Cystitis like me. I passed the Cysto/Hydro, Potassium Test, and when I was given a rescue installation I flared the second it entered my bladder. So I am the opposite of most people here, yet I definitely have IC. This is the medical opinion of four very good urologists.

Vicki posted a link to the diet for you, if you haven't tried it yet, please do. You'll find it very helpful!

I agree with Kristi that you need to seek a second opinion. Heck, do what I did, keep going until YOU are satisfied YOU have found someone who will listen and understand you. Find a doctor you have a connection with, and that is genuinely concerned about your well being and quality of life. And do not stop till you do! I know how hard it is. I had to pull myself out of bed some mornings and force myself to call and make appointments and go to them even though all I wanted to do was take 2 Vicodin and go back to bed. But you have to keep pushing yourself to get the answers you need to feel better. Please, please, please do not give up. There are doctors out there that want to help you and will believe in you! Unfortunately with this disease they seem few and far between. Try contacting the ICA http://www.ichelp.org/ and asking for a list of doctors in your area that see IC patients.

Again, I agree with Kristi that the Vicodin may be preventing you from peeing. It most definately decreases my flow and sometimes I have to just sit and relax for a few minutes on the pot and it'll come eventually. It's a pain, but it works. Just don't push hard or anything, you can end up giving yourself a muscle spasm around your bladder and end up causing yourself more pain!

If you ever need to talk PM me or my contact info is below. I wish you the best of luck. Do not give up until you are happy with the answers you get. It's your body and your life and you should be the one in control.

XOXO

[MissGlass]

i acutally just had a cyst that hemmoraged that has collected in the "cul de sac" i have this very often. and believe me it hurt!!! I have seen probably 8 diff docs now. I really wish there was a support group or IC network around here (fargo ND) so i could ask some patients who they see bc this whole "doctor shopping" i'm being labeled as is just bringing me down. and bc a doc can't find anything wrong my BF thinks there isn't anything wrong i need mental help. but damnit my bladder/pelvic area is killing me!! and the vicidin is the only reason i can get out of bed in the morning some days. i'm at a loss of what to do i do aprreciate all your help thank you so much! my yahoo user is nglass114 add me i would love to talk to any of you:hi:

[jenjen05]

Oh sweetie, that's exactly my problem. You sound just like me before I found a doctor that understood and helped me.

After they saw the cyst in my cul-de-sac I had a laproscopy and they sucked it out and tested the fluid, it was sterile. But when that sucker grows back every month you best believe my pain goes up.

Doctors will only think your doctor shopping if you go in asking for narcotics every time. A good way to combat this I found was to go in to the doctor and instead of coming right out and asking... simply say what I finally said to my doctor only replace your age with mine and put your own spin on it:
"I'm 24 years old. I'm here for a second opinion because I am 24. And I don't want a life sentence of chronic pain. My life is being turned upside down and I don't know how I'm supposed to live like this. I am alienating the people who love me and they are having a hard time believing that the pain I'm in is real. And I know my tests say one thing, but I am in a great deal of pain. And I don't want to live like this. Please help me find an answer and a way to deal with my pain, even if you can't permanently fix it." Then if the doctor does not mention pain drugs or therapy of any kind, simply say...
"I understand that at my age doctors are hesitant to prescribe pain drugs because of their addictive nature. But I need my life back. I am 24 years old. I need to be able to hold a full time job and have normal interactions with people around me. I'm not asking for a total lack of pain, and I am willing to follow the diet and any other treatments you ask me to try, but I need pain relief. And I would appreciate it if you would please try me on some kind of narcotic therapy short term and if you don't like how I handle it or believe I am becoming an addict, I will understand if you don't want to give it to me. But I am asking you, as someone who is too young for this, to please give me a chance at living my life fully."

I said something similar to that and had a hardcore, 56 year old urologist who NEVER prescribes pain meds, or so everyone told me, give me a script for 30 Vicodin ES right then and there.

I know some people will read this and think that I am "coaching" you on how to score drugs. And yeah, I guess I am. But I am crying right now remembering what it was like to be in your shoes and have no one in this world believe me. It's like your just this young person and just because the look on our face and our young bodies don't scream "chronic pain patient" we must not be in pain. Well we are. And I believe you. And everyone else here does too.

My boyfriend felt the same way yours did. Then he read that book I mentioned. Please buy it and give it to him. If he reads it and doesn't believe you, well I would break up with him. Someone who loves you, will believe you. And will want to help you. When I flare, my boyfriend turns out the lights and he lights candles and gives me a back massage and turns on my heating pad for me, and brings me my bottle of Vicodin and even keeps track of the time so he can tell me exactly when I can take another one. He even watches Disney Princess movies with me because he knows it makes me happy. He'll even run out and get food and fix me and IC safe rescue meal. That is love. He also does not ask me for sex. He lets me approach him. I try to give it to him at least once a week or once every other week depending on how I feel and if not there are other ways to be intimate. And maybe this is a little too personal, but I'm a real open person... when we do have sex we make movies sometimes so that if he's in the mood and I'm flaring and hurting really bad, he doesn't want to cause me more pain so he knows he can just do what he needs to do watching that movie ;-) And my boyfriend isn't a rarity either, though I know to some he sounds too good to be true. I was talking to another one of the members of this forum on facebook, and her boyfriend has been with her for as long as yours has, and he is very, very, very good to her. If the guy loves you, and you present him with enough information, and he either doesn't understand or isn't willing to, he doesn't love you and you deserve better and will find better!

If you want to talk please PM me and I'll give you my phone number and you can text me or call me any time, day or night. I'm in regular contact with a few of the girls on here and we support each other when were having a rough time or just need to vent or just wanna talk about life in general.

Please know that this is not the end of the world. It took me a very long time to figure that out. You will find relief, maybe not totally, but just keep looking and you'll find it. Surround yourself with positive people. Take care of your body, please try the IC Diet, and if you'd like me to send you a rescue menu you can eat for a few days that will help your symptoms I will.

Many, many HUGS to you. And much love! Be strong and courageous in this battle! Don't let your pain own you- own your pain and be in control!

XOXO

[KarenAnne]

The cul de sac is just a little area behind the uterus. When we ovulate, the follicular cyst ruptures to release the egg, & the fluid from the normal follicle drips into the cul de sac. When other types of cysts rupture, the fluid in them collects in the same place. There are several areas in the abdomen & pelvis that "free" fluid can gather. It is just like gutters on roofs where the rain collects.

But if a follicular cyst gets too large or a corpus luteal cyst is large & ruptures, it can be very painful. You need a good urologist & a knowledgeable gynecologist. When you had the cystoscope, was it with hydrodistention of the bladder? How were these cysts diagnosed? CT scan? How many ovarian cysts & what day of your menstrual cycle were the ovarian cysts seen? Was the cyst/cysts seen on one kidney or both & were they reported as "simple cysts"? As for the liver, was it reported as a "cystic area" or possible hemangioma? And finally, have you seen an endocrinologist or a rheumatologist? Karen

[MissGlass]

I don't get my periods more than once or twice a year... i also broke my l3 l4 and l5 vertebrea. it says i have a small area of hypodensity within the left psoas muscle a small ganglian cyst. there is a mass like density that is probably represnets some fluid in the cul-de-sac. it is possible that this is some fluid that is complicated by some hemorrahage or debirs. ? i also noticed today, i have been peeing every 30 mins or so ( and i haven't drank very much one bottle of water and a glass of apple juice all day) and my pee is clear like water.

[MissGlass]

it was a hydro of my bladder and yes it did feel better for about 2 wks after. but my urologist grr said this isn't urology related (my pain that is) get a family doc. i have an appt with a reproductive endo. next week.

[Briza]

i also noticed today, i have been peeing every 30 mins or so ( and i haven't drank very much one bottle of water and a glass of apple juice all day) and my pee is clear like water.

Hi Welcome to the board:hi:
I'm sorry I can't address your other health issues I am not familiar with them but I AM familiar with what I quoted above:
MANY of us with IC find that it is best to keep very well hydrated with liquids we can tolerate (mainly water) and doing so can greatly reduce urgency and frequency and dribbilitus ;)(where you have urgency to pee frequently but only pee small amounts) and burning.
Keeping the urine diluted with lots of water is imperative for many of us for keeping those symptoms under control.
Hope this helps! take care!

PS>>
ahhhhhhhh...yes, I had MANY a doctor tell me it was all in my head before I FINALLY got diagnosis and appropriate/adequate treatment:cussing:...from my experience, fire those drs and keep on truckin' til you find the one that works for you and with you (I FINALLY found mine:bow:)...well, after going thru all that to get a diagnosis and treatment you bet I needed someone to help get my head screwed on straight again:rolleyes::bonk:...but that was just a side effect of the long, painful, bumpy, stressful journey to diagnosis and then relief. Hang in there!

[MissGlass]

another thing i haven't mentioned is when i take vicidin it makes me poop. and when i poop i have immediate relief from the pain/pressure down there. but sometimes i have hard hard stools sometimes i have loose stools. but always the relief.

[jenjen05]

Stop drinking the apple juice! That's probably adding to your frequency issue. Stick to only water and milk until you go on the IC Diet and figure out what other fluids you can add in without causing yourself pain.