new here ,and glad I found it.

[featherbullet]

Hi everyone. This looks like such a great site to be a part of- especially since this is an especially hard condition to deal with and has made me feel very scared and alone. (And apparently a medical marvel to every doctor I have seen)

This is my story:

I just turned 28. I have had about 15 uti's since my early twenties-it is something that was really becoming a problem and always seemed to be related to sexual activity. So I became very careful about hygiene and urinating before and after intercourse.

I also started a natural product called cystoforce by A. Vogel . It is a mix of echinacea and uva ursi. It seemed to keep infections at bay although I kept feeling like I was 'on the verge" of an infection. I remember around this time last year I finished up a round of macrobid and felt like the infection did not clear up..the burning stopped but I kept having to urinate a lot.

Over the next few months I found myself going to the washroom more and more and more..by the fall I was starting to get up several times at night . I think I got my urine tested once or twice at the doctors and it was negative. Finally I explained that I was going so much that it was bothersome and they prescribed me oxybutinin 5mg which gave me horrid stomach pains so I stopped after one pill.

I got in to see a urologist who told me that it may be IC and to avoid coffee , smoking, etc and try a product called cysta- Q.
I took the medication but it didn't do much. It contains cranberry, bromelain, valerian, quercetin, passion flower and wood betony.

These symptoms continued as more of an annoyance than anything until a couple months ago when I found I was going and going and still feeling like my bladder was full, along with weird pressure, pain and twisting, cramping feelings .

I took myself to the hospital where they did a culture than came back negative. The emerg doc there basically said there was nothing he could do but refer me to another urologist.

By the time the appointment came around I was in incredible pain that had spread to my lower back (like pressure on my bowel or tailbone) along with a scraping feeling in my bladder and inetense pressure that I can best describe as my insides falling out of me.

In june, I had a cystoscopy and cystometry done-the urlogist said I dont have any spots or scarring, etc on my bladder that is consistantly found with IC. he said that i just have a "small, sensitive bladder" . He has me on 4mg detrol LA (holy expensive!) and prescribed elavil for the pain which I have yet to take . (I hate anti depressants and their side effects).
I have also been relying on tramacet (pain killer) for when it becomes excruciating and cannot sleep . I heavily rely on a heating pad.

Just 2 weeks ago I called an ambulance because the burning was spreading down my thighs and up into my back.I really thought it was the beginning of the end. I waited many hours at the hospital just for them to do a urine sample and tell me there is no infection and to tell my family doctor to get on the phone with my gynocologist and get me in for a laparoscopy soon.

Currently the pain in my back is most bothersome (kidney area) and I worry that this is getting serious. Just 2 hours ago I was on the floor with such intense cramping.


I forgot to mention that I have done 2 ultrasounds which have shown no irregularities other than an ovarian cyst (which i have had many times). They said my bladder emptied normally. i also had x-rays done a week ago (heard nothing back about that)


I have gone off of yasmin (a BC pill that Ive been taking for years) because I wonder if it contributes to my symptoms. I guess I am desperate for anything to help.

I work at a health food store luckily so I have bought some l-Argenine and Quercetin complex(with grape seed extract, blood orange extract, and turmeric( which I hear has been helpful for some people with this condition. )

Next up is a laparoscopy to rule out endometriosis . I haven't got a date booked yet but see my family doc tomorrow. Should I ask her for any specific tests? i haven't done bloodwork or anything like that.

I am not sure what else can be done. I am really suffering, staring to miss shifts at work, and am considering disability. (i hear that IC is considered a disabilty ( pain similiar to cancer pain) and I believe it!

One more thing to mention is that my symptoms seem to shift all of the time between pressure, urgency (up to 20x a day) , pain, cramping, and sometimes burning. I can experience them all in the same day , but usually not all at once.

I thank anyone who has read all of this. I hope someone can relate or give me advice. I have cut out coffee and chocolate , as well as acidic juices.

My thoughts and prayers go out to others suffering with bladder problems.

[featherbullet]

I forgot to mention that I take probiotics and drink lots of water. I eat very healthy and have lost about 7 pounds since May. (A lot for me since Im not a big person to begin with)

I also take baking soda baths and drink water with baking soda when the urine stings.

something else that seems to exaserbate my symptoms is my mental health
. I have depression, ocd, and GAD (generalized anxiety disorder)

[Pammylynn8]

Hi there! I am new too! Welcome!
It sound like you have been through a lot with a lot of tests. Have you had those kidneys checked out well? Are they draining properly into your kidney?
I have a lot of the same bladder symptoms that you do. I currently have a ovarian cyst right now and I am hoping it has gone away by now. I also have panic disorder, depression, and OCD plus I have IBS.
I think you will find this board really helpful and the people here super nice who can support you etc.
Hope you are feeling better soon.

[Mothergoose]

Hi not to minimize what you are going through but you just described what a lot of people with IC go through.

It is a very hard condition to get used too, and hard to get a handle on and find the right treatment for you.

Right now what you can do for yourself is print out the diet and only eat foods from the safe list, until your bladder settles down if you continue to eat any of the foods which may bother your bladder your symptoms will not improve. you may still be aggravating it by eating something, it is kind of an all or nothing diet.

In time after your bladder calms down and you find a treatment plan that works for you can try adding foods back into your diet one at a time, you will not have to eat this way for ever. To begin with it really helps to avoid any foods which may cause you problems.

You might want to re consider trying the elavil, it is given at a way lower dose for IC then Depression, people often start at 10mg a day and if need to move up from there, most people don't go past about 50mgs a day, I can't remember right now but I think for depression it is around 300mg per day, it does help lots of people with IC pain and sleep.

There is not a blood test to show IC, some Dr. diagnose it on symptoms, some with an in office cysto or a cysto/hydro awake or asleep, it just depends on the Dr. it doesn't show up on ultrasounds.

You may or may not have IC that remains to be seen but it can't hurt to follow the diet exactly.

Good luck on getting a diagnoses. MG

[featherbullet]

thanks very much for replying.

I'll find the link for the diet and get that started. I am stubborn and have a certain way of eating but if it will help my pain, then I would do anything.

pammy-do you find that having anxiety disorders make something like this extremely hard to handle? sleepless nights? crazy thoughts that you just can't go on or handle it?

my family, friends, and boyfriend worry so much and I hate to put that strain on them. One day Im dealing well, the next I come through the door from work in a teary panic and pace around like a maniac .

I know that ultrasounds do not show IC but we were trying to rule out problems emptying the bladder or any other issues with the uterus.

I'll make sure to ask my doc tomorrow for blood tests for my kidneys.

Right now my bladder feels like exploding . I have no idea what I ate or drank or if it is the painkiller that is causing me to retain urine .i think that is a side effect. sigh..you take the pill for the pain and then have to deal with intense pressure. cant win!

again, thanks for listening.

[Pammylynn8]

I hope you get a little bit of relief really soon, it sounds sooooo painful!!

I take Lexapro and Klonopin which work GREAT for my anxiety, OCD, depression. Not that is takes away everything, but it helps so much. Have you tried these?

[featherbullet]

Actually yes, I have been on Klonapin for many years since it is the ONLY thing that has ever helped my anxiety. In the past 6 months though i weened myself off of it because I know it is not good to be on long term. I wonder if that triggered all of this. I am now taking it when I need it to control the anxiety that stems from this condition. It keeps me sane I tell ya!

lexapro is what type of drug?

I may give Elavil a shot, along with the IC diet. I have faith that it will at least improve my quality of life. I am a very determined person. I have been dealt many crummy hands in life and i used to sink into a depression and give up but as I get older I feel that never giving up and havign faith is a much better option.

Thanks again for your response! Its very very comforting to finally be chatting with people who understand!

[Pammylynn8]

Hi again! My dr. doesn't worry about my taking just 1 mg of klonopin a day longterm. He stressed that the benefits for me outweigh the risks. I KNOW how hard it is to wean off of it. How fast did you get off? That could be your bodyis re-adjusting to not having klonopin and it might take longer for you to feel good again. However if it makes you feel better, it might be worth talking with your dr. about taking a low dose daily?
As for lexapro, it is an SSRI anti-depressant and one of the best for my anxiety and depression. So far I have felt normal again, whatever "normal" is. Elavil is a tricyclic anti-depressant (they are the older ones) that might work really well for both your anxiety and bladder problems. I used to be Anafrail (in same tricyclic family as Elavil) and it worked well for my ocd, anxiety and such. The only reason I switched from that to Lexapro is my dr. thought Lexapro would work better and have less side effects.
I hope you find a medication that helps!!

[Mothergoose]

There are lots of other pain meds if you think it is causeing or adding to the retention, you could ask to try a different one.

MG

[featherbullet]

Hi again! My dr. doesn't worry about my taking just 1 mg of klonopin a day longterm. He stressed that the benefits for me outweigh the risks. I KNOW how hard it is to wean off of it. How fast did you get off? That could be your bodyis re-adjusting to not having klonopin and it might take longer for you to feel good again. However if it makes you feel better, it might be worth talking with your dr. about taking a low dose daily?
As for lexapro, it is an SSRI anti-depressant and one of the best for my anxiety and depression. So far I have felt normal again, whatever "normal" is. Elavil is a tricyclic anti-depressant (they are the older ones) that might work really well for both your anxiety and bladder problems. I used to be Anafrail (in same tricyclic family as Elavil) and it worked well for my ocd, anxiety and such. The only reason I switched from that to Lexapro is my dr. thought Lexapro would work better and have less side effects.
I hope you find a medication that helps!!

It took me about 6 months to completely cut out the Klonapin completely. I can't help but wonder if this caused the bladder problems in the first place. My doctor just gave me 15 more, but caitioned me that it is addictive (like I didnt know that, ive been taking it for 7 years!!)

I want to add that I just took my first dose of elavil and stopped the detrol since it wasn't very effective . I am scared, because I have not done well with anti depressants in the past. Given that I have terrible anxiety and sometimes depression, I am very self vigilant and notice every weird or different feeling I am having, which sometimes turns into a panic attack. sigh..

Its scary to stop the detrol because I know how it made me feel and am afriad that the frequency will start to get worse. I suppose that I can always go back on it if thats the case.

I know that elavil can take a month or so to help with pain, so i will try to stick with it.
wish me luck.

I also am being booked for a consult with a new urologist and also on a priority list for a laporoscopy.