Do I have IC, I am not sure yet but at the end of my rope?

[Lexiebug]

Hi there, I am desperate and have been to hell and back. I have three wonderful children (1st, 2nd and 3rd) and I am a single mom. Two years ago, I had my fifth endo. and had my left ovary removed where my ureter was cut and I wore a nephro.tube to save my kidney and had two stents in. I was welll for a few months after the surgery and as time passed, I started to have pain, and I was always saying my bladder hurt and it hurt during intercore and the burning pain in my vagina has about killed me.

So, I was sent to pain management for eith months as a doctor told me that I was not someone to have surgery again and I was high risk and resorted to pain management...at first, ultram helped, then they put me on the fentanyl patch, had a few good months but always felt I could not wear tight clothes as my bladder hurt so bad. Then, I lost so much weight, just 94 pounds and hate it. Finally, the pain got so bad, the narcotics stopped working and they just put me on methadone to get me through until a final diagnosis. They are looking for one of two things, IC or some urethra condition.

So, I am literrally at the end of my rope. I have no life as the methadone (very low dose) took the edge off as I was shaking in pain for almost six months and I mean PAIN! It was so bad, I was going crazy.

What I don't understand is the progress of my condition, it gets worse and worse and worse.

I have burning (I call it "on fire") in my vagina. The specialist said my urethra is raw and very red "I have never seen a urethra this red in 40 year practice." My father just flew in from NJ to Arizona to help me until we get this diagnosed and under control. I can't tell you how much my bladder never stops moving. It feels like a pinching and if I try to relax it, if I concentrate on relaxing it, it can never just calm, it shoots back up, every few seconds. It gurgles and it is so miserable. I feel sore, like someone kicked me in the gut. My vagina is so sore and it burns and burns and then I will get an arrousal feeling, it never calms down, always a feeling of burning, or some irritating feeling of infection or inflamation, yet all tests are normal but always a little blood in urine in cup.

I have severe pain where my left ovary was, I have lower back pain, all on the left. I cannot take much more and I feel this will never end.

I cannot believe I am on narcotics that don't touch the pain but they tried methadone to see if it would take the edge off and it has, enough to function, but I can't live this way.

I am getting into the top IC doctor next wednesday. The other specialist said he needs her to confirm (for sure) it is IC. I never get a remission though, I have never had pain like this in my life and the pinching in my bladder never stops, that is the best description, my vagina is always burning, even if I am not urinating. I don't urinate during the night but I feel I could just sit forever, even if I don't have to go.

I don't know what I have but it looks like IC and I tried elavil, nothing. I started Detrol LA, today. I have tried Pyridium, nothing. I don't know what is wrong with me, the humiliation of people who don't care and think I am nuts. I am sick of being sick. I want my life back and I hate that I feel it will never go away, that is my biggest fear. How can high doese of NARCOTICS barely touch this pain. I feel I have scar tissue and adhesions all over the place. I am so tired of it and it never stops, not for a minute of the day, can I get relief.

Does this sound like IC? Driving is the worst, sitting, is very uncomfortable and walking is hell. I have sat in a ball for months, just praying and hoping it will go away. I am being patient to get into this woman who is very good but my fear is they won't know what to do. Why is my urethra so red and swollen? I don't know what I have and I don't want to be on narcotics but until this methadone, they tell me I have to take it to stay comfortable until I get help. My lower left back is sore, I am so tired of it.

Does this sound like IC? When I walk, I have to hold my bladder, I can't even walk straight anymore

I didn't know this site existed so thank you for being there, I have read some and please be patient with me. I wonder, have you had pain that is so bad if you didn't get relief by the strongest, you would have died? I mean, I am on methadone to just get a little relief. I am being very patient to get to the right woman but another week seems like 50 years.

Is there hope, does it sound like IC to you? The stigma I have with some docs and the people who don't get it, it is so cruel. I know this all started after my surgery yet I also was involved with a boyfriend and we did have intercorse that was very physical and we are over with and it is very sad. But, I am alone, not sexual active. I just want my life back. Does it get better, is there anything I can start to do myself. I am on the fourth day of Bactrum. I take Klonopin (a tranquilizer) at beditime, I just don't understand how pain and this gurgling bladder that never stops, this is me? I am 37, very depressed about being sick.

My bladder feels very sore, I feel inflamed, sick and just infected or unhealthy up there. I have an odor I never had before and I just don't know, I feel they all say IC, I went to the ER five times in two weeks from the pain.

Please help me, I am so desperate to know what it is, if you will stay with me, I feel so alone.

Can scar tissue and adhesions be taking over?

Lost and a very sad mom. My father and I are just fried and I need hope. I want to be a healthy mommy again and know this is not the pain I will feel forever and the creepy bladder feeling. I hate it so much.

Love to you all,
Amy

[massagedoula]

Amy,
I hear your pain in your post and I am sorry for how you feel right now. Please know that it will get better. I hope that you do not have IC, but if you do, then know that the time before diagnosis is always the worst. There is that fear of the unknown and the period of getting used to it all. The best advice I can give you is to start the IC diet now. It may take a good month or 2 to really see the difference, but it is really worth it. 89% of all IC patients say that diet changes helped them.

I can't promise, I am sorry, but I feel that you will get better. When I got IC I would go up to 5 days without sleep and even a shot of demerol in the ER one night did not get me unable to feel my bladder.

Now, most days I am well enough to do most things I like to do. I am a full time student which would never have been possible 9 months ago. I still feel my bladder, I still know I have IC, but the main thing is IT IS NOT AS BAD AS IT WAS....And with the right diet, meds, alternative meds, and lifestyle changes, things can get better. it just takes time. These message boards are a godsend for anyone that is suffering from IC, especially if you are new to it all. Welcome...

[Lexiebug]

Thank you for reading all of that. I am so scared as I think I would rather anything to hear it is something curable than IC but it seems too many think it is. I am shot. I have fibro/CFS, I have had the most stressful year of my life but I never get a break from it. No remission to say it is a good hour or barable. I cannot believe the durageisic patch worked but then stopped and until the pain managemnet doc gave me this little bit of methadone, it just took the edge off, it is still there......I always feel my bladder moving, like it just won't rest and it hurts and I am so tired, I dont sleep, I am so worried because it hurts that much. The burning it the worst pain I have ever felt, I just feel so sick and I don't know how people do it. I want to have the hope that it will get better but it has become so bad, I am just terrified they will never know what is wrong with me.

Thank you for being right there, I am tired, tired of feeling this nightmare that never stops and just wanting it to end.

Love to you and thank you, I wish a five minute break could happen, to just lay there and feel nothing.

I am going to read all the archives and I really aporeciate you beiing here. Until the methadone, I was shaking in pain so badly, it was like my body was in shock, agony, all I can say is out of my mind agony.

I am going to learn all I can. I am so sick, I dont want to live this torment anymore, I just hope the woman is this good.

I live in Arizona, if anyone knows the best, please tell me, even if it's a closer state, my father is here to get me better, (managebale), I have no quality of life and I have to get it manageble, I can't live on heavy narcotics, I just want to know this pinching in my bladder is not a feeling I will have forever, that never goes away, even with the pain numbed a little. It is brutal, I just hate it so much, it has ruined my life. I look in the mirror and feel it has aged me ten years in just one year, I am so tired and sick and sick of being worn out by the pain, the worry and not knowing if they will ever get it pin pointed.

Thank you from the bottom of my heart.

I don't know how I got this, I just had surgery to remove my ovary and they botched it with my ureter being cut, now,what I live with is the feeling of the catheter in me all the time. I am so sad. Sad for my kids who need their healthy mom and a mom who can't bare to pee it is like knives but there is never a break........do you all feel there is never a break, no matter how you sit, stand, nothing helps.....just squatting and praying.

I never went to the er (in my entire life) for five days straight, it was that bad, they are so cold, so mean, but I am that sick and nobody seems to care.

I hope these specialists will get it. Is the urethra being inflamed normal for this, I feel like I get a gush of discharge all the time, also, and that odor, I just feel sickly inside and WHERE is it all coming from? I never had a UTI or bladder infection in my life, this all started after surgery.

I am sad. I had a wonderful life, it ruined my relationship with the man I loved, I miss the old me so much, can't stand it, and wonder if I will ever be me again. Is carnation instant breakfast ok to drink as eating is hard for me, so weak and sick, so I drink lots of that,just to keep nourishment in me.

Thanks so much, I am glad I found you but wish you never had this, any of you.

Love,
Amy

[mare mare]

Amy, "Welcome my new friend!" You seem like such a sweet person. It is really hard to give you advice seeing how you have so many things going on with your body. I'm definitely not a Dr. but if I were you, I would get a second opion (Urologist). There are certain questions they ask and tests they can do. In the meantime, I have found a little relief from burning with Vagisil Creme. A nice hot bath always helps (while I'm in there. When I get out the pain comes right back. But who can lay around in a hot bath all day!?) I am a big fan of B@O Suppositories. I use them when I'm having severe bladder spasms (which sounds like you might have) and pain in bladder area.
I will keep you in my prayers!
Hang in there!
You are in the right place for support!!!
Come back as often as you need to!!

Hugs, Mare Mare

[ICNDonna]

First of all, I'm very glad you found the IC Network. There's a wealth of information and support here.

There's one thing you can do right now before you see the specialist next week --- and that is to try the IC diet. You'll find it at http://www.ic-network.com/handbook If you're drinking juices, sodas, and coffee, they are a problem for nearly everyone with IC.

Is the doctor you will be seeing a urologist? The reason I ask is that is the specialty that usually deals with IC.

It's possible that you could have adhesions along with your bladder problems. When I first developed IC, I also had adhesions from a previous surgery --- when I had surgery for the adhesions, it really decreased my pain level.

I hope you find some answers soon so you can begin to feel better.

Sending healing thoughts,
Donna

[SandyRN]

Hi Amy,

to the board. I would start where Donna told you to, at the handbook. While you are waiting on a diagnosis, there are lots of things you can do at home to help ease the pain and many are listed in the handbook. Heat, cold, baths if you can tolerate them, etc have been a very big help for me.

I have fibro/cfs/mps as well and I can understand the pain and frustration you are going through. I can't really even remember, or count, all the doctors I have been to since the mystery pain started and the crazy fatigue kept me from working a job as a RN that I loved. Not long after those diagnoses, I started with the bladder problems, infections that put me in the hospital, etc.

Now that I've finally found a great urologist, a great internal med doc, a great pain management doctor, I am slowly getting things under control. I have good days and bad days, but, most of the time I function better than I did a few years ago.

I never expect to be "well" again, but I now know that I can live a pretty normal life, I just have to take medications and do other things (instills) that help my bladder, and my fibro pain.

It almost always get better to a certain extent. There aren't many people out there that haven't been helped in some form or fashion. It's the WAITING to get a diagnosis that will drive you mad because you don't know what in the world is going on.

I understand how you feel about going to the ER, and how cruel they can be. It's sad but many doctor's and nurses are very jaded against people in pain because they see so many people come in there just wanting a "fix".... and those people ruin it for us who have true, uncontrollable pain. Nothing excuses a rude doctor, or nurse though, ever and if you are treated badly, please report these people to the hospital administration.

I have some of the vaginal burning, strange arousal that you speak of as well. I have pelvic floor dysfunction and it causes urethral spasms, trouble starting and stopping my urine stream, pain after sex (in my case....not during --thankful for THAT much at least ). ....I am going to see a physical therapist that I hope can help me get that straightened out as well....hopefully that will help my bladder problems as well.

I just told you these things so that you can begin to see that you are not alone, you're not a freak, and that there are people out there with the very same symptoms that you have.

Keep coming back here...this is a great bunch of loving, knowlegable people here and I don't know how I would have gotten through all of this without this board.

I hope things straighten out for you soon......read the board, and ask any question you think of, ok?

Take care!

Hugs, Sandy

[sistersara77]

Hey Girl.
I just read your message. I know the feeling. That was me a year ago. I never thought I would have a day with out pain. I was in pain 24/7 for 4yrs. I just started one morning. I thought, I'll see the doctor and I'll get something for it. That was far from the truth. From that day forward I had seen many Doctors, had many tests and taken many meds. I took the strongest meds from Vicodin to Morephine, none of which touch my pain. I tought the same thing, How can this be? One thing I never mentioned to the doctors was the aroused feeling that came with the pain. Truth be known, I was embarrassed, But I eventually did. Was told it was nerve connections.??

About this time last year I was reffered to a Uro and we did the DMSO. I was lead to believe the pain would go away right away. I was so upset afterwards because I felt worse. I stopped doing the DMSO. I was a wreck!!

I seen my family doctor and she put me on Zoloft. Started me off with 25/mgs to 100/mgs, where I am now. At The same time my Uro gave me Vesicare/5mgs. Then One day I noticed my pain was gone. I've been takeing only these Meds once a day since. I had acouple of mild attacks but it's usually gone by the third day. Also... I watch what I eat. I don't take Vitamins, they can set off a flare. Anything with citris or vinegar. I had some sweet and sour rice the other day and it had a mild effect, but anyway, As they say in here "What works for one, may not work for another?

All I can say is "Don't give up!!" You'll find what works for you.

[Char*Ann]

Hi-
It sounds like to me you may have a few things going on.
If I was to take a guess:Maybe IC(blood in your urine and bladder pain,etc)
maybe an infection of some sort (re:odor and discharge and burning in vagina) odor can mean you have bacterial vaginitis.Have you been checked for STD's since your last partner?
Have you been checked for a UTI recently? I don't know why your urethra would be so inflamed,mine hurts sometimes from the IC though.Could you have an infection from the surgery maybe? Or some kinda urethritis?
Also maybe your bladder might be prolapsed (Re:feel like you have to hold your bladder up while walking) Mine is, I just found out,and I feel like my bladder is gonna fall out at times.

Of course I am no Dr. nurse etc...I am just taking guesses by your symptoms.To me it sounds like you may have a few different things going on.

I hope they figure it out soon.You need a good uro who needs to look at your bladder and do a cysto/hydrodistention, and possibly you need a good gyn too.No one can dx you with IC but a urologist.

It took me several months from Nov-March to convince my Dr to send me to a uro.I kept having pain, UTI symptoms,with blood in my urine but no infection everytime I went to the Dr.Then it took a month for me to convince the uro to look at my bladder.(I was lucky as my best friend has IC and pretty much knew what was wrong with me,and pushed me to get a dx)She dx'ed me with over-active bladder, which I was already dx'ed with at age 17.She put me on Detrol and I could not urinate,so that is when she decided to look at my bladder. Be Pro-Active, don't take NO for an answer,and don't let them tell you it is in your head!(((HUGS)))