I am new and am miserable

[katya_35]

I have had IC for many years, I just started getting into acupuncture, herbal combinations, out of desperation I finally asked my doc to help, she gave me some Detrol LA to try. I have been on it for a week. I am sitting here with my bladder on fire and wonder when it was going to start working. I had one good day this past week and saw the new Star Wars movie and actually sat for 2 and 1/2 hours without the urge, but that has been my only good day. Sleeping has been non existant for months now. I am just about broke emotionally and financially from hunting down the magic bullet. Watching my diet, not drinking anything but purified water, and waking up constantly wondering, if my bladder has nothing going into it, why do I need to urinate so often, especially now that I am on Detrol La, supposed to stop bladder spasms. I have tried Acid Redux, ***** Max, the herbal combinations the acupunturist has put me on. Detrol La, I am tired. I know that it gets worse before my period, so maybe I can blame the pain on that. I have read many of your posts, wonderful, wonderful suggestions and I hope that I have come to the right place. Thank you for taking the time to read this. katya_35

[emilyrose197377]

I am sorry to hear about your ic problems you have come to the right place eceryone here is a big help. I have ic/neurogenic bladder. I take urecholine and ibuprofen and also I am trying cystex analgesic for my bladder and lidocaine with aloe for numbing creme it seems to be helping a little.

[VickiB]

I'm sorry to hear you're still in pain after such a long time being diagnosed. IC can be so hard (and expensive) to live with while you look for that silver bullet! I do hope you'll find something soon that relieves your pain!

Vicki

[Sarojini]

:welcome: to the ICN. I hope you can find the right treatment for you soon!

[katya_35]

Thank you all so much, I do not feel alone anymore,

[Portia17]

katya:

The only person that helped me was PAIN MANAGEMENT. I strongly suggest you inquire about it

Hugs

[Imustpee]

:welcome: Lots of nice helpful people here....

[vm]

I would check on the herbal treatments you are taking - just to be sure they aren't things that would flare up an IC bladder.

I found that Detrol LA helped me a tiny bit (and I still take it - very necessary for m)but I needed other meds, also. You might ask your doc about what other meds he or she could prescribe as Detrol LA alone wouldn't help many of us feel totally better.

[ICNDonna]

When you say there isn't any urine there, is it because you aren't drinking an adequate amount. It's very important to get enough fluids so your urine won't become concentrated.

And I agree with Kim that you should discuss with your doctor all of the remedies you are trying.

Donna

[melanie626]

I agree with the above..I would talk to your MD to see what else to try. I am all for homeopathy, but conventional medicine is here for a reason as well and there are MANY combos to try. It is a drag to have to try them, but hoepfully you will find the right combo sometime soon. Please feel better soon-
Melanie

[poetgirl]

Detrol LA is usually prescribed for urgency/frequency -- mostly with people that have overactive bladder, but it can also be helpful to some IC patients. It does not usually help with pain, although I guess your urologist thinks that maybe your pain is a result of bladder spasms. However, if it is because of inflammation, Detrol LA will not help that very much at all.

As Donna advised, it is important to drink enough water. If you let the urine get concentrated in your bladder, it will irritate the lining and cause more inflammation. It's our inclination not to drink water when we're flaring because we're constantly battling the urge to urinate, but not hydrating yourself enough can cause other problems in the long run. I am trying to remember this as well, since I am naturally a camel -- rarely ever feel thirsty, so I forget to drink throughout the day!

What herbal remedies are you taking? Were they suggested by a naturopathic doctor, or did you begin taking them after doing independent research?

[SrMaggie]

I'm not consistent in my water intake. sometimes I drink a lot and other times I get so busy I forget. My uro told me the 8 glasses a day is not for me. He said we have a thirst - drink.

[katya_35]

Thanks to all for the many responses. I just got back online to check and also leave my story at the "share your story" thread. I am diligent in drinking water, and the herbs I am taking include a diruetic, I am going back to see the chiroprator who does my acupuncture tomorrow and ask if taking it does not interfere with the Detrol LA. As my bio states, I had the whole nine yards done about a decade ago, DMSO wash, bladder enlargement, newly lasered urethral opening, alas this mess has come back with a vengance and I don't have the insurance I used to. So a urologist is out of the question for now. I do see a general practioner on a regular basis, and she is the one that gave me the samples of Detrol LA. I also do kegals faithfully with a kegalmaster restistance device, it works great for pelvic floor strength, but I don't use it during a flare up. I find that contracting those muscles just seem to make me go more. I did try a castor oil pack followed up with a cold pack and it worked wonders the other night. I was thrilled to get 4 hours of straight sleep. I can just get lost reading all of the wonderful posts here. Thanks again for answering my post and I look forward to a fruitful learning process here. katya_35

[poetgirl]

This is just my opinion, but I would recommend discontinuing the use of the diuretic, because it is going to interfere with Detrol LA's efficacy. I guess it was prescribed to you since you said you had trouble urinating adequately, but diuretics really only help with excess water retention in body tissues (which can be caused by high blood pressure or too much sodium use.) Caffeine is a diuretic too -- and you will notice that only some of us on the boards can tolerate it at all in our coffee or tea because it causes the bladder to overfunction.

It's more likely the problems you're experiencing are in part due to bladder or pelvic floor functioning -- which the cold pack/castor oil pack seems to have helped with by relaxing those muscles.

Does your chiropractor adjust your sacral spine vertebrae at all? I'm very curious about the herbs you've been prescribed too -- out of curiosity. If you aren't already taking them, you might want to try calcium citrate and magnesium -- both are natural muscle relaxants and anti-inflammatories.

Good luck! :bunny:

[emilyrose197377]

I did not know that I am on a duiretic for high blood pressure. so that could make my bladder inflammation and symptoms worse?

[poetgirl]

Some information on herbals used in Ayurvedic medicine to treat various urinary problems:

http://www.allayurveda.com/topic_month_october2003.htm

Notice many of them have a diuretic effect. That's because Eastern medicine places emphasis on cleansing of toxins from your system, which (in my opinion) is a good thing. But if you're already experiencing pain from muscle contractions or inflammation in the bladder or pelvic region, increasing the voiding output through diuretics is probably going to aggravate existing symptoms. It's like giving a laxative to someone with IBS-D who is already experiencing abdominal pain and cramping! I think these detoxifying approaches can be very effective, but perhaps should not be attempted until your symptoms have stabilized. I just did a liver cleanse, which overall has helped me feel better, but I have IBS-D and experienced more, um, "cleansing" than the average person might.

Emily, as far as your high blood pressure goes, I really don't know what to say about that. I guess it's a question of what is more of a problem for you and most medical practitioners are probably going to say it's the high blood pressure that needs to be brought under control first. Do you stick with a low sodium diet?

[katya_35]

I am on a few combo's, one is called DFS formula. it is thyroid and adrenal function. I don't have him adjust my vertebras, I do it myself. I do yoga and am very flexible and can "pop" my back all to heck. lol. The other herbal combo which has the diruetic in it is called UR KID. Both are manufactured by a company called Nutri-West, I have found them online in case I run out from the doc. The DSF formula is for stress, and is chewed, bitter as sin but it does help with stress almost within 5 mintues after chewing it up.
My regular doctor says that my pelvic muscles are doing great since using the kegalmaster, I jokingly call it the kegalmonster, my S/O loves it, as do I for our love life. But she is not poo pooing the fact that I am seeing an acupuncturist, for which I am grateful, I know that some conventional docs do not approve of natural alternatives. But she is cool with it. She encourages me to keep up with the yoga, and the pelvic floor exercises and I go back to see her in 3 weeks with an update on the Detrol LA. When I told my acupuncturist that she had given me samples of Detrol LA, he looked crushed, I told him that his treatments are wonderful, but I was desperate when I went in to see my regular doc, it was scheduled, I have a mitral valve prolapse and she keeps tabs on it, and she asked me why I looked so tired. So I told her. Being the sweet woman that she is, runs and grabs samples for me. I am not one to turn down anything that is relevant to relief.
I still found the packs to be the best thing yet for flare ups. Acupuncture does help almost immediately but, I have to wait to see him until my appts. OH well, I guess it is all a trial and error learning experience, but I am glad I have the imput of such wonderful people here. You have all helped so much, just reading the written word of so much experience and knowledge on IC is mind blowing. Bless you all.

[minnie_min99]

hi there,
i am also on detrol La and take pondstat for occasional pain. And if you are wondering why you dont feel the effects of the detrol yet its because it could take up to 6 months to fully be affective on your body. I have been on it now for almost 9 months and it does help but there is still a little pain all the time. The only thing i can suggest is maybe asking for a pain reliever with it because if you give it time, the detrol will help. Like i said it works great for me and has even increased my bladder capacity and the amount of time it takes me to flare up. Dont get me wrong it did take alot of adjustments like the ic diet and change of lifestyle a little but you will get there.

Hope your feeling better and welcome to the bunch

[poetgirl]

I think it's good to combine alternative therapies with Western medicine, in order to find the combination of treatments that provide you with the greatest amount of relief -- and make you feel good, on a holistic level. Regardless of anything else I've been doing, I know I cannot live for long without my Detrol LA! I went a couple of days without it because I had to have my uro call in a refill and the night before last, I had sudden urge incontinence while I was sleeping and almost wet the bed. I was up several times that night, which normally I am not when I'm taking the meds. I took it last night and slept through without having to get up once.

The acupuncture will help you with more than just your bladder, since it is more of a holistic treatment, so your acupuncturist shouldn't feel "crushed." In the long run, he is doing you a lot of good. :)

[katya_35]

I shouldn't really say that, I was his first female patient that had went to him for this condtition, and he told me he did not promise a miracle. When I was going 3 times a week, it was great, I slept more, did more yoga, I actually felt human again. He had treated men for prostate problems and frequent urination, but women had never asked him about it before until I came along. I guess I burst his bubble when I told him about the samples. But he is still seeing me and is still encouraging, he got over his miffed feelings quickly. Plus my S/O was in the room with me with a big smile on his face, so I guess it helped to soothe his wounds. Men. lol.
Well, I need to get off this message board, I have to go make arrangements for my mother's impending funeral, she was diagnosed yesterday with lung cancer and also has Alzheimer's. I need to go spend time with her. I just need to hold her, and have her hold me back. I'll check in later this evening with the board here. Please have a most wonderul day. katya_35

[sistersara7]

Hi. I'm sorry your in pain. Been there. :(
I was doing so well. Six weeks with out pain untill yesterday. My Uro gave me a prescription for VESICARE 5mg (for frequence - A new Drug) and afew days after I started taking it I noticed I was feeling so much better. I was having weeks with out pain until I ran out acouple of days ago. I woke up yesterday(May25th) with some pain, as the day went on it got worse. I filled my prescription the same day. I took it last night and I'm fine today. I was thinking maybe this is helping me. At least something to look into. I'm also taking Zoloft(100mg) for my sanity and I'm feeling just fine with the exception of yesterday.
I used to take them diet pills and didn't know at the time it was the pills that kept me in pain 24/7. I've tried other diet pills but they have the same affect on me. I no longer try any of that stuff. YEP!! I've learned my lesson. LOL :D
I really hope you feel better soon
SisterSara1

[katya_35]

thanks for answering my plea. I am glad you found what helps. I am going to wait for the CystaQ, and use castor oil and cold packs for now. I don't dare take another Detrol La, it scared the pee out of me.. literally. Take care and good luck. katya_35