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  • Hello

    Hello everyone,
    I have not been on the site for awhile since I have been so busy with my spinal stenosis stuff and now finally able to go back to work, but having a hard time getting to work. I have a question for everyone, I could not get this though a post for some reason, so I am editing this one. Over Mother's Day weekend I went over to my Mother's she works for a Doctor's office, I told her I was having a bad bad flair up and I know something else is very wrong, so she took a look and this is what she found, she found a tear in my upper lip part and besides that she saw a blood vessels pulsing she said, like both area's were very irritated and swollen. The matter is the whold outside area was swollen red and irritated this is a monthly thing I go though a week before my period always very irriated and swollen and so very hard for me. It seems so go down but never quiet goes away and I don't know if this is a horimonal thing or what? I put ainitbonic orment on the area and seems to help some, but I am not sure what is causeing this. I have called my OBGYN and yes he thinks I should come in, I have been in remission with IC for a while and hit me so badly in May, so what do you guys think?\


    Last edited by lasrlsrps; 05-22-2007, 01:36 PM.

  • #2

    I don't know if you know about uristat, (also called AZO) which is over the counter pyridium. Thats the drug your doctor prescribes to calm down the symptoms of a uti. I use it during bad flares also. Be careful to follow the packages dosage instructions though, as too much pyridium can aggrevate the bladder and actually WORSEN a flare.

    Also hot water bottles/ heat packs on your crotch or pelvis. Hot baths, or sometimes cold water bottles/ ice packs will relax your bladder during a flare.

    If you check this site, there are a lot of older posts on how to deal with flares which have some home remedies that you can try. Good luck!


    • #3
      welcome to the boards. You can ask the pharmyst he would be able to tell you what there is and works.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        I know how expensive the Elmiron can be, it seems like it costs me too much and I have insurance! I believe that you can find info about programs to help you pay for your Elmiron when you don't have insurance. There is a forum for resources for low income patients:

        I also think that I have read some people talking about freeze dried aloe working the same way as Elmiron but for less money and more natural. I'm sure if you do a search for posts w/ freeze dried aloe you will find some info about that as well. Hope this helps
        And to the IC network

        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus


        • #5
          Lori. I am sorry that you are in pain right now. However, you have come to the right place for support and suggestions to help you through.
          I really can't comment on over the counter medications as, being in Australia, while probably similar, they are under different names. Before my diagnosis and Endep( Elavil), I found great relief by following the diet and taking the bicarb in water. Just using a ring cushion while sitting for long periods also made a huge difference for me. Please check out the ICN handbook too.
          I hope we see more of you around the boards. There are also threads here that help get your mind off IC for a while., from cooking and crafts to humour and TV/movies.


          • #6
            I suggest you talk with your doctor's office about the drug company's plan to provide Elmiron for patients who can't afford it at all. If your doc's office doesn't have the information, the elmiron web site will have it.

            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help:


            Diet list:

            AUA Guidelines:

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              Thank you everybody for your suggestion. I went to the store yesterday and got the azo over the couter medication, I am feeling alot better. I was also told by someone that if you put baking soda in water just a teaspoon in and eight ounce glass it will help but you have to do this three times a day. Has anybody tied this methold? i would like to know if it helped anyone? I will also check out the book on the web site, I seen pretty good boys to help me handle the pain. The net had so much to offer I am so glad I found this site, I also hope I get to know you names so I know whom I am talking. Like I said thanks so much for everything.



              • #8
                I was diagnosed with IC, pelvic floor spasms, and possible endometrosis, i had no idea what was going on b/c i was in constant pain and for over a year no doctors could find out what was wrong and they told me that the pain was in my head. I finally went to see a specialist in hershey, pa and she told me i have interstitial cystitis they have tried bladder distentions, elmiron, elavil, baclofen, and instilations but nothing has worked. now they are sending me to pain management, i was happy for going to pm but when i first met them they wanted to do a nerve block already and didn't even offer anything else like TENS. i THINK MAYBE OFFERING SOMETHING ELSE FIRST B/C I'M SCARED to get that done, my dad had one before and and they messed up and now he's on disability and has to walk with a cane


                • #9
                  Lori, I am on Elavil but when I get breakthrough pain, Bicarb in water is what usually fixes it within about 20 mins.



                  • #10
                    HI Lori
                    Good new i can give you it that i took couldnt get my Elmiron from my insurance. I get mine free. I am surprised that your doctor has not told you of it.
                    The program is threw Johnson and Johnson Patient Assistantance Program.
                    the number is 1-800-652-6227, thats the number for reaplying or for questions about partisipating in the program. I had a question one time, and I called them, they are very helpful, and will direct you to where you need to go.
                    I do know you do need to meet their met their income requirements, but i am thinking its a decent amount that your allowed to make. IF you have other medican besides the Elmiron, they might be able to help you with that also. All mine are covered except the Elmiron it was at first but then they stopped covering it.
                    I do know you fill out a small sheet, then your doctor will fill out the rest, the dosage ect... then you will get a prescription card, and you just use it at the poharmacy and you pay nothing for it. I get mine at walmart. Or they have other places walgreens or riteaid. a few others i think.
                    I hope this info helps you out. Over the counter to try also is Prelief. It helps with to reduce acid in the urine, and also for pain pyridium, its pretty cheep for prescription, i think under 20$, but you can also get otc, its called AZO Standered, its basicaly the same thing, it says it for uti's but basicaly its the same type of medican.
                    Also stay away from cranberry juice it will make it worse. and all citrus foods, and spicy foods also thats can triger the pains. For me a strange one which helped me so much when i didnt know what was causing what Midol PMS it helps so much with inflamation and back pain, ect. it really does woirk well, maybe worth a try. Also try ice pack in the groin area when its hurting and alternate heat. for me ice seems to help more, since there is inflamation causing the pain. I use heat more for the back pains.
                    But I would call your doctor see which meds you really need to get tell him/her of the plain, then contact Johnson and Johson company see what they will cover for you. I would really ask your doctor on Elivil and Flexeril they are more muscel relaxers, since i been taking them its helped so much, but of course your doctor will know best.
                    Good luck I really hope some of this will work for you.
                    Also for me I didnt have any medical coverage at all. My doctor sent me to FIA family Independance Agency- or where you live, where ever you can go to get medicade or food assistance, this kind of a place. I was able to get my insurance threw there. But as a worning you have to be very very low income. I had to stop working for a while, cos i had surgery which is why my doc sent me there, but when i returned i was told i can only make about 500$ a month you have to be like 150% below poverty. I am not sure if every state is the same or not.
                    Also threw this office, they should have a prescription assisance plan. which will give you a certain precentage off all medications. I know my state offeres it but not 100% sure if others do. I would guess most would offer some help. For that there is no income limmits. If if you dont qualify for the insurance help, maybe they do have the prescription plan that can help you.
                    I never knew about it till a friend was having a baby and she had to get insurance threw the state. She saw it there and gave me the info.
                    Best of luck to you and i am sure if you try these places there will be some help for you. You can get deffinat help from the parient assistance program.
                    Good Luck

                    Current Conditions:
                    IC,Feb 06

                    Prenecious Anemia
                    Stomach Ulcers
                    Acid Reflux
                    Low Blood Sugar

                    Gaul Bladder-1996


                    Elmiron,100mg 2am 2pm
                    Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
                    Elavil, 150 1pm
                    Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
                    Prilosec,20mg 1am 1pm
                    Zoloft,100mg 1 pm
                    Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
                    Reglan, 10mg, 1 3xday with meals-for duonditis
                    Ultram 50mg 1 every 4hrs as needed for pain
                    Pyridim,100mg as needed
                    Vicodin 5/500 as needed for pain
                    Heating pad
                    Ice Pack
                    Arthritis Pain Equate brand 650mg usualy 2 at a time
                    Stool softeners w/stimuli, 2am 2pm[/COLOR]

                    Hopefuly no more gets added to the list!!!

                    I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
                    Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
                    My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
                    When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
                    Dont forget to take care of you!
                    Take care