No end in sight!

[tara73]

I have been in a horrible flare since the beginning of November with no end in sight. In fact, just when I think it can't get any worse, it does. It started with a few days of frequency the first week of November. By the end of that week it was a full blown flare. I started out just asking to have my Enablex increased because I thought that had been helping. Restarted bladder instillations. Soon I had the kind of urgency where you go and within a minute you have to go again. UA normal. Started on Prosed and vaginal Valium. Valium helped relax me for a couple of days. Then came pain, urgency and frequency. Called doc since I was not on any pain meds with no new orders. Spent all of Thanksgiving week in bed with a heating pad even though I had company. He saw me in office after Thanksgiving and ordered vaginal Baclofen, Vistaril, Elavil and UA and continue instillations. Got a call a couple days later with an order for Diflucan becuz my urine contained yeast. Now I'm waking up every night in severe pain with severe burning and the usual frequency and urgency. I have called every couple of days to report the pain and burning and he wont order any pain meds nor will he order another UA. I've had the burning for over a week. I ended up going to my primary doctor for my back pain that I always had and he gave me a small prescription of Nucynta (new pain med) but he will only give it short term and gave me 30 for a month...which would be fine if it lasted 24 hours but it only lasts 4 hours. So basically I can have 1 a day. So I'm having the severe pain every day and have to wait until I can't handle it. Today, I woke up at 5 am and it was so bad I had to take one of those pills. What I don't understand is why my urogynecologist is refusing to treat the pain? And this isn't a little bit of pain its severe and crippling pain. I am spending most of my days in bed with a heating pad but I have to get out to take the kids to and from school and thats about it. The urogyn is pushing for the Interstim but that doesn't treat pain either. I asked the nurse today if they could refer me to the pain clinic but she said they only do that after they have exhausted all other options which is interesting because they wont prescribe any pain meds. I'm really not asking for a lot I just want something I can take in the morning and something at night. So basically every day I'm having severe pain, severe burning, severe frequency and severe urgency. I think I will lay in bed and cry until the New Year.:confused:

[ICNDonna]

I think it sounds like second opinion time. And I suggest someone in a different office practice if possible.

Donna

[Erica1836]

I agree with Donna..you have the right to be treated for your pain. I would look into getting a new doctor who is more willing to work on getting you out of bed. Pain medications are made for people like us so we can do normal day to day things. Hope you get some relief soon...sending warm hugs your way!

[tara73]

Donna and Erica, I think we are on the same page. I looked up today to see that there is a different urogyn in a different office (affiliated with the other hospital) in town here. I just didn't know if I should switch doctors at this point or wait it out. I had been in remission from July to October but when I flare it's just terrible and takes about 6 months to go away. I feel bad asking for pain meds because I know they don't want me to become addicted but it hurts too bad to just deal with it every day. I feel like a terrible mother because I'm in bed most of the day and just taxi the kids to school. Luckily they are almost 17 and 9 so they can help take care of things but I feel like I should be doing more with them and if I felt better, I would.

[dyno]

I have to say that I agree with Donna on this. You should be able to get some pain relief. Hugs.

[tara73]

Well, now I'm not sure. The nurse called and they scheduled the Interstim trial and gave me a referral to the pain cinic. So maybe I will stick it out with them a little longer before getting a second opinion. We'll see how quick they can get me into the pain clinic. Suprisingly I didn't wake up during the night... so that was nice for a change but I do ocassionally have a good day and know that its not gone.

[tara73]

Now I am all confused. I have been reading all the Interstim trials and failures. Seems to be more failures than successes. I need help!!!

[dyno]

It is very important to go into the Interstim with your eyes wide open and doing your research. There are a lot of failures but there are also successes. The interstim can cause life changing changes in both a good way for the successes and a bad way for the failures. No one can make the decision for you and the best thing you can do is research it.

[aleet7]

Tara,
I'm so sorry that you are going through this! I know exactly what you're saying because I'm in the same place! I got pain meds for a herniated disc and I suffered because I have to take them only when the pain is unbearable to save my pain meds! My uro is not into giving pain meds for IC. The only pain meds I've been getting is for my back and for severe headaches. Most Urgent care docs won't give you 30 pills and like you said they only last for 4 hours so you can't take them every 4 hours or you'll run out!

I get really frustrated when docs throw pain meds at my husband and he turns them down! He really doesn't need them and doesn't want them but IC patients need them and many can't get them! The last time I went to an Urgent care because my back went out, the doc said, I see that you've been here the last two times for pain...I told him that I wouldn't come if I wasn't in pain... really!

I hope you find a doc that believes in treating your pain...because clearly some uro's don't(mine included)!

Aleet7

[tara73]

It's so frustrating. I moved to South Dakota a year ago from Iowa. In Iowa they had me on a low dose of methadone for my back pain. My sister lives here so when I moved I decided to just go to her doctor. I actually was doing okay with my back pain on Darvocet but that has been recalled by the FDA and pharmacist says it wont be coming back. So then he put me on Ultram which I had been on for years and I think Tylenol is stronger than Ultram. LOL. So I haven't been on any narcotics in over a year but now with this bladder pain, my back is acting up too. Sometimes I dont know if its my back or my bladder because I just hurt. But the last couple weeks I keep waking up in the middle of the night with excruciating bladder pain and burning. I call the urogyn every couple of days and he does nothing. I haven't been to the ER in years so they cant use that excuse. Really they have no reason to think that I might abuse them. My primary doctor finally gave me that new med but I know he's not gonna give me a refill. Because he said it was for short term. I had 30 but am down to about 15 so I need to use them carefully. My back is killing me right now but I dont want to take one because if I wake up in the night with the bladder pain...thats worse. I really hope the pain clinic will be more understanding otherwise I will switch all my doctors to the other major medical center in town here because I am ready to give up. I have been researching my urogyn doc and he has some good patient ratings but I also read some bad experiences people have had with him. The other urogyn in town is booked til Feb. So, keeping my fingers crossed for the pain clinic. Completely unsure about the Interstim...I'm afraid that it might make my back worse.

[Erica1836]

Tara,
i'm going through the same thing with the interstim implant (minus the back pain) I'm stressing myself out over this decision. I do research, but depending on where you look there are either success stories or really bad horror stories. And the doctor that wants to do it is my new uro so its not like i have a relationship with him or trust him yet. Anyways, about the pain clinic. I have been to one once when I was living in Akron. They are trained to try to be able to detect the drug seekers so i'm sure that you'll be fine. I just explained what my pain was like, how often I had it, and how often i missed school/work because of it then they wrote my prescription. I did have to take a drug test when I first went in but i doubt any of us ICers are out there partying! haha I had a really great doctor at the one i went to so I hope you have the same luck!!!

[tara73]

I can pass a drug test...lol. I hope they help. As for the Interstim, I am shceduled for the trial Dec 27 but I'm giving myself til Dec 20th to change my mind. Still thinking about it.

[marar76]

Just wondering, when you a lot of times I read "burning bladder" or "pain" where are you feeling the burning? Around your subpubic area or in your vagina? I get burning but it feels like I can't place the burn but it's somewhere near the vaginal opening? Thanks!

Rachael

[tara73]

Sometimes its a sharp pain in the vaginal area. But when its really bad it feels like it is coming straight from my bladder. Like my bladder is on fire. It feels like my bladder needs to be removed. I can't always pinpoint it though. Sometimes it just feels like all my organs down there hurt. I have to put my heating pad with half between my legs and the other half on my pelvic area.

[Erica1836]

thats exactly where my heating pad is right now! I haven't scheduled the interstim trial yet...i go friday for tests. He wants to do another cysto and more urodynamic testing (whatever the heck that is). hopefully this cysto isn't as painful as my last one..i was in bed for 2 days afterwards :(

[tara73]

Good luck with the cysto... that doesn't sound like fun. I hate those. I just got to go do another UA since my last one had yeast in it. Then I still haven't cancelled the appointment for the Interstim trial...yet. We'll see. My biggest fear is that it will make me hurt worse and my doc doesn't give pain meds.

[bob04951]

Always, always, second opinions before anyone wants to cut you.

Uros/gyns will not prescribe long term pain meds because they are supposed to FIX problems. So you would not need those meds.

Interstim was contraindicated for my hub as he has serious retention, blood clots and pulmonary embolisms. But his uro will not see him again unless he wants the interstim. NOT!!! So go with you instincts, do your research, and don't do what a doc tells you just because he/she is a doc.

If you go there, good luck, many here have success, so hopefully you will be another. Please let us all know how things turn out. Jill, wife of Bob

[tara73]

Thank you, Jill for your opinion. I appreciate hearing different peoples opinions. I have never had surgery before so this is a big decision for me to make so I definately appreciate the input!

[Erica1836]

I just got back from my tests and cysto. My doctor thinks I would really benefit from the interstim. He told me I could do the trial and he does that right in his office with local anesthesia. He made it seem like the trial wasn't a big deal and then I could decide from there if I felt like it helped and whether I wanted it implanted or not. Tara -- what did your doctor tell you about the trial phase?

[tara73]

Erica, Pretty much the same thing. He does it right in the office too under local. It will stay in for 10 days. I have read on others posts that it hurts going in but it doesn't hurt coming out. I am prolly doing the trial dec 27, I will post how it goes. It is supposed to help with the frequency and urgency but not the pain or burning. Read about it. Not just on here but on google or yahoo or something. I searched Intertim failures and Interstim successes. I also googled my docotr to see if there were any complaints about him theres a sight I think it was called ratemd but i'm not sure that showed what 10 people had to say about my docotr. Most of it was good but there were a couple not so good ones. Knowledge is power! Theres also a forum on here that lists question to ask your doctor. I dont remember which one it was but if i see i will let you know.

[Bekah79]

:grouphug:Tara, I hope the interstim helps you. Good Luck

Keep The Faith:pray:

[tara73]

Bekah, I'm so happy for you and your pregnancy! I can't imagine being pregnant with this and going without meds. Best of luck! My son turns 17 on Monday and my daughter is 9. So, I didn't have the IC when I had them. But I do so love being pregnant and then having a baby! It's such an exciting time! Best of luck!!!

[Erica1836]

Thanks for all the info tara! Good luck with your trial let me know how it goes. My doctor told me that he is hoping it will help my pain...which is my main complaint. Sooo I'll guess we'll see!

[tara73]

Erica, They say it's not specifically for pain but it does sometimes help some people with the pain in I think around 60 % of the cases but don't quote me on that percentage. Doctors aren't really supposed to say it's for pain. But I will keep you posted. Hope you have Happy Holidays! I've been busy Christmas shopping and wrapping the last couple days and it is wearing me out. Woke up feeling like I can't move but I must attend my sons Birthday party today! He's 17 tomorrow.

[tara73]

A setback today. Got my repeat UA back and now I have a bladder infection too. My frequency/urgency is continuous again. I go and within a minute I have to go again. Cant get to sleep because I have the constant fullness in my bladder. I'm really upset with the doctor for not doing my UA two weeks ago when I was calling every couple of days with severe pain and burning. Really wanna switch doctors but also really wanna do Interstim trial next Monday, while the kids are off school and I can rest. The soonest a different doc can get me in is Feb and I just don't think I can wait that long.

[Erica1836]

Sorry to hear about your infection :mad: I had the same situation with my old uro and i went ahead and let him do my cysto and he made me very uncomfortable and it hurt a lot. My new uro did one on friday and it was so much better. Thats a hard decision though...i hate waiting long to get in to see a doctor. Sometimes you can talk to the receptionist and explain your situation and maybe get an understanding one who can fit you in sooner. Good luck and happy holidays!

[tara73]

Happy holidays, Erica and everyone else. Going ahead with Interstim trial Dec 27, will keep you posted.

[aleet7]

Happy Holiday Tara! I pray that you get relief from the Interstim! Please let us know how it goes! I saw my doc Monday and she refused to give me pain meds again! She suggested interstim for me as well! I'm not sure if I should get it because I'm supposed to have surgery for pelvic organ prolapse. My back is still in horrible shape and I'm taking Flexerill for it and Tylenol!

Best Wishes!
Aleet7

[tara73]

I'm going to do the trial but it will have to make a huge difference for me to go thru with the implant. I'm skeptical about the interstim but want to see if it would help me. But if doctor says oh we'll have to make adjustments, etc then I'm outta there. It either works during the trial or I wont get it. Dont wanna here any bs. And then I'm gonna try and switch doctors. He did give me a refferal to the pain clinic but I want to talk to my primary doctor before I go thru with that, since he did give me something for back pain (but it was 30 pills for a month). Since they put me on medicine for a UTI, the bladder pain hasn't been as bad. Right now my back is hurting more than my bladder.

[aleet7]

Pain clinics are getting a bad wrap in my area...maybe that's why my doc is being so hard about not writing too many scipts for pain meds! My back is also hurting me more than my bladder at this point...but I don't have anything to deal with any of the pain. Please let me know how the trial works out...I may get it too. I just know that I need some help right now with the pain I'm in! I'm sick of physical therapy for my back right now...the pain in my legs and back are out of control! I'm praying for a referral to a pain management clinic!!!!!

Aleet7

[tara73]

I just heard from my urogyn and my Interstim trial is cancelled for the 27th. I guess my insurance won't approve it yet but are going to review my case. So that kinda sucks because I wanted to get it done while I had company here to take care of the kids. So now, I'm thinking about getting a second opinion. I see my primary January 4 th so I'm gonna talk to him about that and the pain clinic idea. See what he thinks. I guess the good part is hopefully I wont be laid up in bed for the holidays but I'm not gonna count on that because I should get my period soon and last month when I had that I could barely move. I don't know why but it just killed my bladder.

[aleet7]

Tara,
I'm so sorry that they canceled your Interstim Trial. That had to be very disappointing! Unfortunately many of us have flares on our period(I always wondered is it hormonal). I pray that you don't have one this time.

Take Care!
Aleet7

[tara73]

Iam disappointed that the trial was cancelled but I guess it gives me more time to think about getting a second opinion as I haven't been very happy with the urogyn that I have been going to. Had a nice Christmas with just a little back pain but now today I'm flaring bad. I don't know if it was something I drank or because I did something with my boyfriend. Just resting here with the heating pad running back and forth to the bathroom. Also my monthly should be coming soon so maybe its that. Maybe its a mixture of everything. I already used a Baclofen, maybe I'll try a Valium next. All my female organs feel like they are tied in knots right now.

[aleet7]

Hi Tara,
I'm sorry that you're flaring! Sometimes it's hard to tell what it is exactly that causes some flares. My Christmas was good also. I had to lay down a lot because my back is still giving me problems. I hope you find a Uro that is good at their craft and sympathetic to your needs! My Uro is waiting on me to call her to schedule surgery for my prolapse repair. I'm just not ready for my bladder to go haywire with surgery(this surgery also repairs my low bladder)! I'm scared to death over the painful recovery for 6-8weeks!
Have you tried rescue Instills yet? I was just wondering if you have. My uro thinks that the instills should work better than pain meds. Like you sometimes I can flare and not be able to figure out if it was food, drink or sex that caused the flare.
Anyhow, I hope you get answers and relief soon! Keep us posted!

Aleet7

[tara73]

The last three days I have been laid up with the heating pad until my heating pad exploded yesterday. It shut off and I looked at it and saw the wires were exposed. So like a fool, I tried to push the wires back in and it sparked in my hand. Scared the crap outta me! Guess I wore the whole thing out! Now I'm pretty sure the flare was because my period but I also think having sex before that started didn't help one single bit. Anyways, I've been out and about today, so thats good.
Aleet, I think you should go ahead and schedule your prolapse repair. I can understand why you are hesitant because you're afraid its gonna make everything down there act up but I also think it must be hard to have the prolapse. Is your doctor going to give you pain meds post-surgery? Thats something I would prolly ask about, since you're not really on anything.
I have done instills both at the doctors and at home. They worked last year but don't seem to be working this time around. I go see my primary doctor on Jan. 4th. I'm gonna talk to him about maybe getting a second opinion with my IC since I dont care for the guy I'm seeing. And we'll talk about the back pain, etc. That always goes the same, he explains to me how addictive pain meds are and tries to think of alternatives that we haven't tried but by now, we have tried them all. Elavil, Neurotin, Lyrica, Savella, Ultram... you name it, we've tried all of them. So I am going to ask him about the pain clinic since the urogyn gave me the refferal but I dont wanna go behind his back and do it. So we'll see how that goes.

[aleet7]

Hi Tara,
I was told that the surgery would aggravate my IC because I have to have my bladder re-hung. But...when my bladder calms down, the repair is supposed to help my IC because my uterus won't be laying directly on top of my bladder.

You should ask your primary doc to refer you to another Uro...that's what I did and she was happy to do it. Just like your doc...I got the whole speech about pain meds being addictive and only masking the problem! I did get another sleep aid called Pamelor(sometimes used for fibro and nerve pain). I slept good last night with no trips to the bathroom! I kind of wished that I did go though because the burn is back! It's time to get my heating pad back out! I'm sorry that yours bit the dust...that's why I have two just in case one shuts down on me.
I hope everything works out for you at your appointment!
Best Wishes,
Aleet7

[Linda May]

What is it with these urologist's if they had these ic pains they would treat there pain real quick.:cussing: I just don't understand these doctors don't they no that when your bladder is basically raw it is going to hurt. I wish you well soon.:pray::pray::pray:

[tara73]

Linda, I am half tempted to try and find a female urologist here. Maybe a woman might understand the problems better. I know that the 3 urogynecologists here are men but I'm not sure about just seeing a plain urologist. IDK is there is a difference. The pain has been a little better since they treated my UTI until I got my period. Now starting from scratch again!
Oh and I gotta new heating pad. Can't go too long without my best friend! But Aleet, maybe when I have a couple extra bucks, I will buy a back up one just in case. My dad was gonna run to the store last night and get me one but I told him I could wait til today.

[aleet7]

I switched to a female Uro and she is much more sympathetic than the other uro's I had! But we can't put all male Uros in a box because there was a person here whose Uro was male and his wife had IC! He was very sympathetic having seen the disease up close and personal! I pray that you get an Uro that is amazing!

I'm so glad that you replaced your heating pad(truly an IC patients' bff)!

Aleet7

[tara73]

Wishing everyone a Happy New Year!

[tara73]

Update: Medicaid wont cover the Interstim trial or implant. So where does that leave me?? Peeing every five minutes for what?? How long am I supposed to live like this? I am depressed and have no idea what to do now. I can barely leave my house. This totally sucks. I was really praying the Interstim would work for me. My urogyn is on vacation so I cant even ask him what next. But I have pretty much read every thread on these boards and know there isn't much else out there that I haven't tried. Pain has been sucking too. IC sucks!!! PLEASE someone develop a pill for it!!

[Erica1836]

Tara I'm so sorry to hear this. Hopefully when your doctor gets back he has another idea that will help you. Sending warm hugs your way

[tara73]

Thank you Erica. I hope you are doing well.

[aleet7]

Tara,
I'm sorry that Medicaid won't cover your procedure...so sorry! There's got to be something else you can try...hoping that your doc has some answers for you.

Hugs,
Aleet7

[tara73]

Haven't even heard from the doctor. I guess I need to call and make an appointment. Called and got refills on my vaginal Valium and ProSed DS but having a terrible time. I'm taking all these meds and this still isn't going away. I am getting really sad too. I feel helpless over this disease. It is eating up my entire life. I am going to the bathroom every 5-15 minutes but I feel like it every minute. Had a couple of good days earlier in the week but now its full blown again. I wish I could pinpoint it to something in my diet but I really cant. Don't know what to do and I'm not sure the doctor is going to have any answers for me since I am already on just about every medication I have read about on here. He's prolly not even going to want to see me again. Anyway, I need to lay back down again. Just feel rotten.

[aleet7]

Hi Tara....I'm so sorry that you're having a rough time! You said that you've tried all the meds and are still feeling badly, just wondering what meds have you tried? Is frequency and urgency your main issues? Just wondering if you've taken any meds that help with depression...this disease can cause anyone to go into depression!

I'm praying for you...that you get answers and relief soon!

)))HUGS(((
Aleet7

[Erica1836]

Tara, I can really relate right now. I'm taking all my meds and doing everything I'm supposed to and I still feel crappy. It's very depressing. I hate the helplessness the most. If there was some kind of magical cure I think we'd all do it. Hang in there though I hope things get better for you. I don't know what kind of pain medication you take but I think mine (percocet) adds to my depression. Let me know if you need anything....we're here for you

[tara73]

Aleet, since I have gotten over the yeast in my urine and the UTI that followed and I'm not on my period, the pain hasn't been as bad. I always have back pain but my primary has been treating that. So, right now, the frequency and urgency is the main problem. Today, isn't a bad day and by not bad I mean going about 20-30 times. On my bad days like the other day when I posted its closer to 40-50 times a day. I go and within minutes I have to go again. It's very frustrating. I am on antidepressants Prozac and Elavil. I'm on over 20 meds, i dont know if I can name them all without leaving anything out. The only thing I haven't tries on here is the Elmiron but I doubt Medicaid would pay for that either. The doctor had said that there is some kind of chemotherapy medicine they can try too but that scares me since I am still of childbearing age (not that I ever have sex due to IC!) but I havent had my tubes tied or anything. I dont plan on anymore kids but it's a hard to say that I want to completely shut that off. I am on instills of Heparin, Solu-cortef and Marcaine. For the bladder I take Enablex, hydroxyzine, Lyrica, Prosed DS, vaginal Valium, vaginal Baclofen and Elavil.
I see you are on Neurontin. I was on that for years for my back but it made me very suicidal. Thats why we're trying Lyrica instead.
It's weird cuz I'll have a couple good days, then a couple bad days, etc. It just cycles. On the bad days I just feel completely hopeless and can't leave the house, on the good days I try and get things done. Thank you for your support. I am glad I have people that I can talk to about it that know what its like.

[tara73]

Erica, you're so sweet. I'm sorry you have been feeling bad too. Did you ever get over that UTI? I know my pain was much worse when I had an infection. It's been manageable lately. I am on Nucynta for my back pain but I have to use them very sparingly- my doc gives me 30 for a month. So unless I feel real bad, I dont take them. It is a new narcotic, the strength is supposed to be equal to Percocet but it's not supposed to be as addictive. My doctor really doesn't want me on any pain meds but we decided on this one. The nice thing about it is that it is instant release, so within 15 minutes I can feel its kicked in. I save them for bad days. It works pretty good. I have always had bipolar disorder so sometimes my depression is worse. When I have a few bad days in a row, I start getting pretty down. I feel like I am too young to deal with all this. On bad days, I only leave the house to get my kids to school and back which takes 45 minutes each way and it kills me to go that long without a bathroom.
I was wondering how old you are? You look young in your picture. I am 37. Maybe I already asked you that and forgot. LOL
Anyways, I was really happy to see you have ur Interstim trial scheduled and coming up. I hope it works for you. That would be wonderful. Let me know how it goes. I'll keep my fingers crossed for you! Thank you for taking the time to offer your support to me. I really appreciate it. I hope that some day there will be a cure for this. I never thought I'd have to worry about bladder problems at this age. I had a pelvic ultrasound done 2 weeks ago to make sure everything else down there is normal and it was normal. So I am happy about that.

[JeanAnn56]

with my new uro was pretty good. i asked him how he treats ic. He said very carefully. He said he didnt beleive in some of the treatments that are so invasive. At this point I dont want any one or anything in my bladder. I have my DMSO treatments and have not really been doing them to much. I cant tell if they help or do more harm. The last thing i want is to total my bladder.

Good like to all of you.....you are in my prayers..i hope the treatments work for you.....

Love
Jean ann

[aleet7]

Hi Tara...You are so right...you have tried a lot of meds!:-( I don't have the frequency and urgency issue as much...my problem is the pelvic burn and lower back pain that goes with it. I also flare on my cycle and stress related issues. I have to mention that I did have the urgency and frequency before my cysto/hydro...have u had that yet? The hydrodistention helped me tremendously with urgency/frequency! I'm just throwing things out there because I wish I could help you some way! I feel this way because I remember how bad it's been for me. Right now I'm having that burning in my lower pelvic and lower back...(family members are stressing me out with all their financial requests)! They have no ideal how much medical debt I have right now!

I can't wait for Elmiron to go generic! I can't afford it right now! It has helped me so much but I can't afford to pay $350 every month(with insurance)! I know I would feel better if I was taking it like I did 2 years ago... I just don't have the money right now.

What I found out when I joined this board is that everyone is different...but what we have in common is that we all need to find the right pain med combination that helps us to heal our bladders! There is a lot of truth to this...but it takes time to find out what helps and what doesn't!
Best Wishes Tara!
Aleet7

[bob04951]

Sometimes there is just no rhyme or reason to flares. And you never know how long they will last. All you can do is try to pamper yourself and not get stressed out. Know that is tough for some, just thinking you have to get up in the AM and go to work, or go to the store or anything when you feel like that. Feel for you and hope you are feeling better these days. Take care of number one, yourself. Jill, wife of Bob

[tara73]

Well maybe some good news today. Finally heard from the doctor's office today. Since the Interstim was denied, he's going to try and get Botox approved by insurance. At this point, I am willing to try anything that may help. So crossing my fingers that the Botox gets approved. I know it's experimental but maybe it will help. Some days I feel like I'm measuring the time between contractions, we're at every 7 minutes today. LOL

[Erica1836]

Hey Tara, I did get over the infection. I was at the doctors on Tuesday and he said I didn't have an infection. He gave me a shot of toradol and demoral which helped a lot with the pain. I'm 24 -- just had a birthday on Tuesday. I'm the same way with leaving the house. If I don't feel good I just wanna be at home so I can take baths often and use my heating pad. My doctor doesn't seem too worried about me becoming addicted to the pain medication. I get worried cause I can feel myself building up tolerance. The amount that used to work sometimes doesn't work anymore. life would be so much easier if there was just an IC pill that took care of ALL the symptoms!

[aleet7]

That is good news! I'm praying that the Botox is approved and that it gives you much relief!

Best Wishes,
Aleet7

[tara73]

Thanks Aleet. I know it sounds crazy and painful but if it helps, it will be worth it. I'm still going to appeal the decision about the Interstim too.

[tara73]

Erica, HAPPY BIRTHDAY!!! That being said, I feel so bad that you are 24 and having to deal with this disease and endometriosis as well. I hope the Interstim works for you!

[Erica1836]

thanks tara! I hope you get some relief soon too :)

[tara73]

Well I have felt good the last couple days...Hope it lasts!!! Still waiting to hear on the Botox but they said it might take a couple weeks to get approval or denial. The only thing I'm worried about is that I will be getting my period in a couple days and that has been hellish the last couple months with the bladder pain. But its important for all of us to enjoy the good days when we get them!!! And pray they last.

[Linda May]

I have not been on in a few days, after 30 years of marriage my husband tells me I am to sick and he don't love me anymore.

This crushed me after I gave him my best as a wife all those years.

I knew something was up from they way his behavior was for the past three months.

I cried a quite a few tears and of course I am still in shock.

I pray to GOD for strength and guidence, that is one thing my husband can not take from me.

I eventually will survive this and I will be stronger, i will not be a victim no more.

He is coming back tomorrow to colect the rest of his things for his nice sweet condo.

This may sound crazy but I do not hate him, I kind of feel sorry for him.

He had a very faithful wife and good mother and friend and he through it all away for pure selvishness.

I was wondering if this happened to anyone else because of thier IC?:pray:

[sailawaygrl]

Linda, I reposted this for you under depression and anxiety so others will see it.

I am praying for you. You can check for feedback by looking at the New Post tab on the blue bar across the top. If you can't find it that way look under the depression section.

[tara73]

Linda, I had noticed you hadn't been on in awhile. I am so sorry to hear this. I don't know what to say. I am sure it has been hard on him dealing with ur IC but he took a vow "in sickness and in health". Don't let yourself become a victim of this terrible disease. As you said you have been a good wife and a good mother and friend to him. He will miss those things. He is the one missing out. I'm sure this will be hard on you and I hope you have good frineds that will help you through this time. And you have friends on here as well. We may not be able to see you but we care about you and your health. I imagine that you prolly are not the only person who has lost their partner due to this since it affects your intimacy and your ability to just live a "normal" life. It takes time learning to live on your own again. My boyfriend of 10 years moved out in March due to issues him and my son were having. He now lives in Florida and I am in South Dakota. At first, I didnt think I'd be able to do everything myself but now I dont think twice about it. Once you get over the initial shock, its actually kinda nice doing the things that you enjoy and maybe have forgotten about. You might spend more time on the computer or watching tv or reading a book but its okay. Hang in there and keep me updated. Hugs and prayers. Tara

[aleet7]

Omg Linda! I am so sorry to hear that your husband feels this way! My pelvic floor therapist told me that several of her patients husbands walked away from them for the same reason! She would offer to talk to the husband if he would agree to come in to talk with her. This breaks my heart to see any of my IC sisters go through this! I pray that God speaks to his heart....our vows say through sickness and in health...! Please hold your head up...I pray that he sees the error of his ways! You are in my prayers Linda!

))))HUGS(((
Aleet7

[aleet7]

Hi Tara...we are so on the same page...as you were writing about our vows I was writing the same thing to Linda! That broke my heart to hear of what she is going through!

I'm praying for you as your monthly is coming...mine is too and my bladder is getting angry by the minutes! My back is in excrutiating pain and I'm trying to get that pain under control before my monthly kicks in. Please let me know about the Botox.

Best Wishes!
Aleet7

[tara73]

I haven't seen Linda May back on since she posted that. I hope she is doing okay. She has been supportive of me since I signed up in December. Poor thing, she deserves better than that. I hope she can take it and somehow turn it into a positive thing for her.
Well found out today, Botox denied. They told me it would cost around 4200 dollars if I wanted to pay for it. If I had that, I wouldn't be on Medicaid. Scheduled another appointment with the urogyn but I think I might cancel it tomorrow and see about a second opinion. I dont know what else they can offer me. I haven't tried hydrodistention, DMSO, or Elmiron. So maybe one of those. If I can get Medicaid to cover anything. I have researched IC all over the place and everything else I'm already on. Still having some okay days then some bad days. My monthly hasn't come yet (a couple days late but that happens sometimes), so the pain isn't too bad yet. I have my usual back pain but just took a pill for that. Mood is soso but a lot disappointed about the Botox and Interstim. I just want something to work so I can leave my house more and not be a victim of my bathroom.

[aleet7]

My prayers are with Linda May...She doesn't deserve that! I'm really sorry that the Botox is so expensive! Who do they think can afford that? I can say that the Elmiron did turn things around for me... I've stop using it because it is too expensive for me. I simply can't afford to pay $350 with insurance for it!

I do think you should get a second opinion. I went through 4 uro's before I ended up with the one I have now...she is really good...not for pain meds though. I pray that you can try Elmiron to see if it works for you. Being a prisoner of your own bathroom isn't any fun!

Aleet7

[tara73]

Well I went to the appointment with the urogyn. He said since Medicaid wont pay for Botox or Interstim that theres not much else he can do. He offered a referral to the Mayo Clinic but thats 5 hours away and he said they don't like to take people with Medicaid. So basically screwed and to make matters worse, I'm having an every 5 minute day. I'm am going to call my primary doc tomorrow (hes out of the office today) and have him give me a referral to a different urologist for a second opinion. Not really any good news today. The urologist office I called has 6 doctors but i asked if any of them specialize in IC and they said no but they do see people with IC. So I dont know how much help they'll be. Theres only one other guy here I can try and he wouldn't be open until April...the other place told me within a month, so I'm gonna try them.

[aleet7]

Hi Tara, I'm so sorry that you don't have good news today. Don't give up! My primary doc always tells me the new info from Urologists when they present it to her. She's hoping that one of these procedures could possibly help me. When I was going to the bathroom every 5 minutes I had a hydro and it really helped me with my frequency. Go ahead and get a referral for another doc. This could be the one with the answers for you! Keep your head up...it does get better!

Hugs,
Aleet7

[tara73]

Does the hydrodistenetion hurt a lot? Do they do it in the office or at the hospital?

[aleet7]

I had the hydro at a surgical center. When I woke up I felt fine! I was told that if I had any discomfort that the nurses would give me meds on the spot for it. I noticed that my frequency was way less than before the procedure. There is actually someone here that had hydrodistention as treatment...I'm not sure how many times a year that they have it. I had it with my cystoscopy as a diagnostic tool. I also had dialation of my urethra...not sure why but I know that several days after my procedure I felt better than I had in years!

Aleet7

[tara73]

Do you remember how long after the hydrodistention did your frequency decrease for? I saw a forum on here about hydro and read it. I think someone said it lasted 6-8 months and then they have it again. It sounds painful but then again so does all this stuff. I'm trying to appeal the Interstim denial and the Botox denial but they wont even call me back. I left a message yesterday and today. And I'll start calling Monday. I didnt call my primary for the the referral yet figure I'll wait til Monday. IDK where this is all going to go. Somebody has to figure something out, I can't live like this all the time. It's so frustrating.

[aleet7]

I believe the hydro lasted me about 8 months. I noticed the affects immediately afterwards. I can't say that it was painful because I was asleep while the procedure was going on. The whole ordeal is very frustrating while you are trying to get dx'd and find what actually helps your bladder. Hang in there Tara...I'm praying for you!

Aleet7

[tara73]

Going for a second opinion with a urologist on Monday. Terrible week but don't feel good and dont feel like typing it out tonight.

[aleet7]

I'm sorry that you're having a really rough time right now. Please take care of yourself, let us know what the doc says when you feel better.

)))HUGS(((
Aleet7

[tara73]

Well first thing Monday morning (the 7th) I fell on a sheet of ice. This caused me to sprain my wrist, hurt my hip and make my back pain worse. Nothing broke at least but spent most of the week in pain with my hip and back. After resting and doing homework the weekend I now feel like I can walk again.
So, I had my second opinion today. My appointment was at 8:45 and they didn't take me back to see the doctor til about 10:15. I spent some time with the nurse going over my meds. Finally saw the doctor at 10:45. Saw him for about 15 minutes maybe. He told me only to drink water and milk for the next month. He said it was good that I was on Elavil. He told me about an IC website. He also ordered a CT scan of my abdomen and pelvis and a cystoscopy, which they conveniently do all these things in their office. I just had a pelvic ultrasound a couple weeks ago. I had a cystoscopy about a year ago and do not want another for no reason. I left the office feeling like I know more about IC than this doctor does.
So now, what to do. I want the CT scan of my abdomen and pelvis to rule out a kidney problem. But I don't want to go back to this doctor. My other doctor at least knew more about IC but he has nothing more he can do for me besides reorder my meds that I want to stay on them. This new doctor just thinks the Elavil is going to cure it, which it hasn't.
So, do I do the tests and then tell him I don't want to see him. Or do I call my primary doctor and explain the situation that I don't want to see this doctor but I would like him to order the CT of abdomen and pelvis to rule out a kidney problem. I don't want to tell the original urogyn that I went and got a second opinion because I intend on going back to him at least for my meds. IDK????

[Cath W]

Hi Tara - have learnt through my own very long battles with my doctors over the IC diagnosis that you have to have faith in in your own medical opinion. Nobody is as well informed as you are about your condition - I think most IC sufferers know more about the disease than many doctors. Follow your own opinions and be very clear about what you need from your doctor.
I agree with you that you should not have to do more testing. When I switched doctors a few years ago he asked for all the previous tests to be repeated - many of them were just agony for me - so I refused to do it unless he could give me a good reason. He didn't give me a good reason and just decided to use the previous data.
Sounds like you are having a horrible time.
In the middle of a flare myself and I am supposed to be on holiday next week with the family - am dreading it as I know I will struggle to join in with anything.

[aleet7]

I'm so sorry that you had a fall(sometimes when it rains...it pours)! If I were you... I'd go back only to hear the results of the tests and get scripts for meds and just not set any addditional appointment with that doc. If you don't want your uro to know that you got a second oppinion...don't tell him or her and just continue to see the uro of your choice. It's all your choice in the first place. We have to be proactive about our own health. It seems that there are more than enough Uro's that know very little about IC. I pick up sometimes that they ask me questions about my previous docs treatment plan only to learn about this disease or disorder( I can tell that they know very little about IC).

I pray that you get some answers and relief soon!

Aleet7

[tara73]

Cath, good luck on your vacation. Hopefully you will be able to have a good time. I know thats hard when you are in a flare. I sure don't feel like having another cystoscopy for no reason. I have already had one and been diagnosed and it was almost exactly a year ago so I dont think I need another one yet. My first urogyn knew enough about it but he said there wasnt anything else he could do for me besides order meds but I think I'm just going to keep him. Because the only 2 meds this other doctor knew about were Elmiron and Elavil. And the original doc has me on everything you can think of except Elmiron, which is too expensive.

[tara73]

Aleet, I was totally unimpressed with the uro I saw and dont want to make another appointment or have the tests done at his office. I find it convenient that they have their own surgical center and ordered a bunch of tests. I want to stay on the meds my original uro has me on. The new guy pretty much only knew about Elavil and I'm on about 5 other things for my bladder. He told me I could only drink milk and water for a month, gave me a list of bladder irritants (diet) and told me about a different website. I know what works in my diet by now and I have a website that I trust. Totally not helpful. I just have to learn to accept, deal with and live with this disease because it aint going away. I can hope and pray that my appeal for the Interstim or Botox goes thru. Good news is I am recovering from the fall. Wrist is better. Hip is getting better. Had some back pain but no bladder pain. Okay just heard back from primary doc and he will go ahead and order the Cat scan of abdomen and pelvis (to rule out a kidney problem). So I wont go back to the other place. And just not mention to the urogyn that I got a second opinion becuz I have a right to one and he doesn't need to know. Great, now I'm booked solid Thursday and the kids dont have school. I have the Cat Scan in the am and dietician at 1:30. There goes my day of sleeping in and relaxing. Shoot plus I have a midterm Friday but I guess I can bring my book and study while I wait.

[JeanAnn56]

I am so leary of doing anything evasive to my bladder. I even gave myself a DMSO treatment the other day and it made me worse. I have been trying so many things!!!! I am getting crazy....today has been ok....been doing natural remedies and pain meds and REST....I think thats what I need to heal.

I do beleive this will heal. However, this time i will not be so naive to think its gone for good. Like you said...I have to accept that i have this and my bladder will always need to be a consideration even when i go into remission.

I just dont know....and stress is a big one too.....

love you guys
jean ann:hi:

[tara73]

JeanAnn, stress is a big part of it. I do see a psychiatrist not just for this but for life in general. Some days are very frustrating, other days depressing and almost always stressful! My doc doesn't do DMSO because it can be hard on the bladder. My instillations are Marcaine, Heparin and Solu-Cortef. I did great from July til the end of October. Then November came and hit me like a bus and its been flared since.

What kind of natural remedies are you trying? Anything that seems to be working or at least helping? I don't know anything about natural remedies but I am always open to suggestions. If those don't help, maybe you should see the doctor. There are other meds to try- I'm on most of them.

I really recommend the vaginal Valium- for pain, spasms and stress. You just put the pill in ur vagina or some days I just take it orally for full effect. You can also pay a pharmacist to make it into a suppository, which I don't do because it cost money and I like to be able to take it orally when I feel like it.

Hope you start feeling better. Pain meds, rest and a good heating pad help. I actually bought a king sized heating pad at Wal-Mart. I kinda like it cuz its big and covers more areas.

[tara73]

Update: Went and had Cat Scans of abdomen and pelvis and they showed nothing. So kidneys have been ruled out. It's just all IC. Also saw the dietician today (yes I had a busy day) as I am thinking about gastric bypass/lap-band. She too, went over the IC diet with me. I know there are a lot of believers in the IC diet but I have already been at this over a year and I know what triggers me and what doesn't. I just sick of everybody thinking that the IC diet is going to change my frequency and urgency. I have made a lot of revisions in my diet. I have about 4 different IC diet lists now plus the one on here! I am thinking about trying to buy a bottle of Pre-lief and see if that helps, if I can find it but dietician thought Wal-Mat would have it. I have seen on here that people take it.

[aleet7]

I'm extremely happy that they did not find something serious on your Ct scan(IC is more than enough to deal with alone)! I can tell that you're frustrated....I get there sometimes too. The IC diet is very helpful although it does not account for stress or hormonal flares.

If you don't find Prelief at walmart then then try Walgreens...that's where I purchase it. I don't leave home without my Prelief.

Best Wishes,
Aleet7

[tara73]

Yeah I looked up the Prelief up and Walmart doesn't have it but Walgreens does. I'm gonna give it a try. Can't hurt, maybe help a little! The dietician recommended it and I have read about a lot of others on here that take it, I just didn't know if it was some kind of stuff you can only get online (I dont trust online meds) but she said no that you get it at the store. Prolly will run get some tomorrow if I can get my homework and midterm exam done. Which obviously I am procrastinating on. Facebook and IC Forum aren't my college website (wish they were!!!)

[Mothergoose]

Save yourself some time and ask for it at the drug store, it is kinda hard to find until you know what to look for and where to look for it.

MG

[tara73]

Thanks Mother Goose. I called ahead to make sure they had it and asked where it was. They said it was with the antacids. So I found it without a problem. so I got it, now crossing my fingers that it will help!

[janlan]

get new doctor something wrong with the medical profession if when you're in that much pain. and refuses to help...I'd want to be put into a coma.

[tara73]

I tried getting a second opinion but that doctor was worse than the first one. He barely knew anything about IC and was a urologist. The only med he knew about was Elmiron and Elavil. So I am going back to my original urogynecologist. He isn't giving me pain meds but is giving me Baclofen, Valium and Prosed DS for the pain/bladder spasms. I have been having my primary doc give me pain meds for my back but I use them for my bladder when needed too. Still having a lot of pain but not quite as bad.

[tara73]

Update: Started the Prelief but I'm not sure I notice much of a difference yet. Does it take a few days to kick in?

[aleet7]

You should take the Prelief prior to eating. It should take the acid out of the food so that the food doesn't hurt your bladder. That's basically what it's for. It should work the day you take it. I wasn't sure if you were expecting it to decrease your frequency. I'm sorry if you aren't getting what you expected out of it.

Aleet7

[cmclien]

Hey Tara,
Prelief doesn't "kick in" unfortunately. Its not a medicine but helps reduce the acid in "the caution list" food. I take a couple before coffee or cocoa, before wine, before anything I think is questionable. You need to take it everytime you eat a food thats not on the ok list. I probably take about 6-10 a day. If it helps you, you'll find it cheaper on amazon.com in a bigger bottle. I figure it helps give me my calcium for the day too. Hope it helps. You can go to their website and it will show for alot of common items how much acid it reduces. My doctor says you can take it when you have a flare too but I haven't found it really helps that, aloe vera helps me more then that, or baking soda....

I personally have found the anticholinergenics work best for frequency (vesicare, ditropan, etc or amitriptyline or noritriptyline etc). They greatly help my frequency, have you tried, or has your doctor given you any of those meds? They don't work for everyone, some people get retention, luckily I do not, it just makes it so I go every 3 hours instead of "feeling" like I gotta go at least hourly.

P.S. the things that effect my frequency the most are coffee (hard to give up), alcohol, and certain spices etc like salsa, cinnamon etc. I think the coffee and alcohol make it worse because they are diuretics so you naturally have to pee more anyways when you drink them.

[tara73]

I guess I thought if it took the acid out that it would in turn decrease the frequency. So it's more for preventing the pain/burning? I do take Elavil and Enablex among a bunch of other stuff. CM how much Elavil do you take? I am on 50 but the doc says I can go up to 90 mg. I hate to take too much as I am on other things that make me tired too. I also have Toviaz that I can try. I really dont know what els I can do to decrease the frequency/urgency. I was in remission from July til October and now have been flaring since November. Some days are better than others but I just cant seem to get back into remission. The bladder instillations and Enablex got me into remission but this time around, they haven't worked. The doc said I could stop the instillations since they aren't working. So IDK whether to do em or not. They are :heparin, Marcaine and Solu-Cortef. I have put them on hold for now because the cathing gave me yeast and a UTI after. But I would like to try em again and see if they would work now. The doc doesn't think they will help but I have all the medicine and supplies. Who knows??? This disease stinks...LOL but as I wrote a couple weeks ago, I am going to try and accept it and deal with it.

[cmclien]

Tara, I suppose it could help reduce frequency since pain probably causes frequency. You'll have to let me know if you notice any difference while taking it.
I am taking pamelor (nortriptyline) instead of elavil because its less sedating but I have to admit I am a drug wimp. I have started out on 10mg. This weekend, after being on it a week I tried going up to 10mg and it really made me feel lethargic and like I was in a fog all weekend long so last night I went back to 10mg. I guess I'll try again next week. I was hoping I'd get up in dose to 20 or 30mg and then wouldn't have to take the vesicare. The vesicare REALLY helps my frequency but the drying side effects are hard for me to deal with since I have chronic dry eye. The vesicare takes away that constant feeling of needing to go pee. The nortriptyline at this small dose reduces it but doesn't take it away.

[tara73]

Prelief- so I think it does kinda work. It's not a miracle cure but it does seem to be helpful. I have found for me that I need to take 3 tablets for it to work. I had lasagna 2 nights ago without an increase in symptoms. I am really craving orange juice but I am scared to death to try it. I have posted before that I think orange juice is just like pouring acid onto my bladder. Maybe I will give it a try over the weekend in case it doesn't work.

[aleet7]

I'd be very careful with the orange juice! I love my prelief but I lose all confidence in it when it comes to orange juice or cranberry juice! That is where I draw the line...don't know how it will affect you though! Be careful!

Aleet7

[tara73]

Maybe I will wait on the orange juice. I've gone this long without it so it shouldn't be hard. Just every once in awhile I crave it but I dont want to spend the weekend laid up either. I got a paper to write and other homework.

[amaranthe]

I switched to a female Uro and she is much more sympathetic than the other uro's I had! But we can't put all male Uros in a box because there was a person here whose Uro was male and his wife had IC! He was very sympathetic having seen the disease up close and personal! I pray that you get an Uro that is amazing!

I'm so glad that you replaced your heating pad(truly an IC patients' bff)!

Aleet7

I think you might be talking about my Dr. His wife has IC. But, he is a Gyn, not a Uro. However, he is my IC Dr. But, having a Dr. whose wife has IC can cut both ways. Yes, he is more knowledgable than most about IC, since he has a personal interest in it as well as a professional interest in it. And he is more than willing to try most anything.....except pain meds, (like many Drs.) Another problem is that apparently, his wife's case is very mild. She also doesnt have alot of pain with hers and manages her IC primarily with the IC Diet and the most basic IC tools, (like Prelief, Elmiron, Elavil, and Prosed.) So, unfortunately, b/c SHE doesnt have alot of pain or need alot of the other kinds of meds, he has a tendency to compartmentalize all IC patients and think that everyone else should manage without pain meds too. (She is even able to still work full-time despite having IC, so that should tell you something about the severity of her case too.)

All in all, he is a good Dr. and mostly very compassionate and sympathetic with one GLARING exception......pain meds. He wouldnt r/x them to me at all for several years. Although, he was up-to-date regarding treatments and the other meds and would bend over backwards to do anything else for me. Finally, after many years, and after we had literally tried everything else, he agreed to refer me to a Pain Mgmt Dr. So, now that I have pain meds and get them elsewhere so I no longer have to ask him for them, I have the best of both worlds.....a knowledgable, compassionate IC Dr and a Pain Dr.

I am not sure if my Dr. was the one you were referring to, but I havent seen any posts by anyone else who has a Dr. who has a spouse with IC. So, I am pretty sure you were talking about my Dr. But, either way, just thought I would mention that there is also a downside to having a Dr. whose wife has IC.

[aleet7]

In fact I was referring to your doc. I think it's like looking for a needle in a haystack to find a doc very knowledgeable of IC and compassionate at the same time! No one answer seems to fit here. My Uro is more knowledgeable yet does NOT believe in pain meds as treatment for IC. I am worn out running from doc to doc! My primary doc is great but does not and will not prescribe pain meds for me...I guess I have to live without pain meds! If I have a flare...I have nothing to help me through the rough times. Nevertheless, I continue to pray for a cure!:-(

I suppose the dream doc would be one that has a wife who has severe IC or a doc that has severe IC themself....go figure!

Aleet7

[amaranthe]

So even though neither your Uro and your PCP will r/x pain meds for you, neither one is willing to refer you to a pain clinic either? That was may problem for a long time too. My PCP knows I go to a pain clinic, but wouldnt refer me there himself and still fusses about me taking them any time I go to his office for anything. And my Gyno (who treats my IC), he wouldnt refer me either for several years, but finally relented and gave me a referral to the pain Clinic after about 4 YEARS. But, like I said, he is great about everything else. (He even finally agreed to let me try to do the instills at home after I'd been going to his office 3 x a week to get them for about 4 years.) He didnt have any other patient that did them at home at that time, but after he saw I was successful with it, he starting letting others do them at home too. But, like you, I wish one of my Drs would r/x the pain meds, so then at least I wouldnt have to drive 5 hours round trip to the pain clinic once a month. But, they just arent comfortable r/xing them for chronic pain. However, I am glad that he at least gave me the referral (finally) so I can get them now.

I feel so bad for you that you dont have pain meds. Have you asked both Drs if either of them will refer you to a pain clinic? At this point, you might need to find a new Dr., if things dont get better and neither will r/x them. I know it is very hard to find a Dr. that is knowledgable about IC and also compassionate and finding one that will r/x pain meds too is like finding the Holy Grail!

[aleet7]

Neither of my docs are interested in referring me to a pain clinic! I currently have a herniated disc in my Lumbar spine with pain and tingling in both legs! I've been miserable with this and the IC pain!

I recently signed up for a program under my insurance called Complex Care. I have a nurse that I have access to 24/7. I talked to her for an hour on the phone explaining that I am a chronic pain sufferer thats live day to day without any pain management. She was furious when I told her that none of my docs will prescribe any pain meds. She got me an appointment with a neurologist for my back problems to see if I could get a script from him or at least a referral to a pain clinic! I'm hopeful that I might get some help soon! If not...I'm taking your advice and finding a new doc!

Best Wishes,
Aleet7

[tara73]

I have a bad back as well as the IC/bladder pain. My PCP fought me for a year and just finally cave in December. He put me on something new called Nucynta because it is supposed to be less addictive. It works and is instant relief (<15 mins) Except he only gives me 30 a month so I have to use them very sparingly...which I am. I go a couple days without them then when I have a bad day, I can have a couple. The urogyn did say he'd refer me to the pain clinic but since my PCP decided to order this, I didn't wanna go behind his back. He is just really worried about addiction.

Aleet, I wanted to ask you about the herniated disc. I have had chronic back pain for 8 years now but all that ever shows up on an MRI is degenerative disc disease. But I fell on the ice a couple weeks ago and since then I have episodes where my back pain goes from like a 5 to a 9 or 10 in a matter of seconds. It comes on abruptly and it is crippling, like I need to sit immediately cause I cant walk and I need a pain pill immediately. one day, I walked from the parking lot to about the 3 rd aisle of Walmart and it came on and my son had to walk me back to the car. I drove home and had to send my son in to get my pain pills cuz I couldn't walk until after I had my pill. Twice it happened in the shower. Another time it happened within a couple minutes of cleaning my kitchen like <5 minutes and I had to sit and take my pain pill. But i was wondering if this happens to you with the herniated disc? I hate to have another MRI but this hasn't happened before the fall. Im mean I was always having pain but it hadn't come on like so severe like that. I know I need to see the doc about it, I have an appointment Tues but was wondering if this is what happens when you have a herniated disc?

Also in regard to your tingling in your legs, have you had an EMG done? This is where they stick needles in your legs and determines nerve damage from ur back. The neurologist will likely order this if you go to him. It's uncomfortable but not terribly painful. I had an S1 radiculopathy and the only way they can determine this is through an EMG. Radiculopathy basically means the disc in ur back is causing nerve damage to your legs.

[aleet7]

Hi Tara,
My back pain started with Degenerative disc disease! One day I was sitting on my ottoman putting lotion on my legs when a pain in my back took my ability to walk away! It felt like an electrical shock! My legs would not work! That is when I went to urgent care and ended up getting a MRI that showed the herniated disc. I do experience the sudden pain that causes weakness and tingling in both legs!

I have not had the EMG done yet. I was told that the feeling of burning is definitely nerve related(that's what my physical therapist said). Today was another day of doing absolutely nothing...my back pain was at a level 8 today(tylenol was never meant to be a medicine for moderate to severe pain!

I can't wait for my appointment next week. I will ask the doc about Nucynta. I just know that I have to have some relief soon! My husband and kids feel helpless with me laying around in pain like this! It's funny...doctors offer my husband pain meds all the time and he never needs them(he turns them down when offered). I asked my Uro to give me a referral to a pain clinic and he said,"why...they'll only give you pain pills"! I was like,"that's the point"!!!!

Thanks,
Aleet7

[tara73]

I did it! I tried orange juice! With the help of 3 prelief and I feel okay. Not any worse than I already am. Now I'm not goiing to add it back into my diet but the occassion occurred and I decided to gice it a whirl. I went to brunch with 3 of my sisters for my sister's birthday and instead of ordering water I ordered orange juice. This was about 5 hours ago and I am doing okay. But I am pretty sure I wouldn't be able to get away with it everyday.

Aleet, do tell me how your appointment went. Are you going to the neurologist or someone else. If its your neurologist appointment be sure to ask for a referral to the pain clinic if he wont rx anything. I usually check this page every day. I should be posting Tuesday after my appointment with my PCP. He's not gonna be thrilled to see me this time because I'm going with a list but I have a lot going on so what do you do? I see him one a month right now but theres so much wrong.

I understand what you mean about your husband and kid. Unfotunately, I am single. So no matter how bad things are, I still have to get things done. I was living with my boyfriend until last March and he was taking care of most everything. But him and my son weren't getting along and some stuff happened... to make a long story short- he lives in Florida and me and the kids are in South Dakota. My kids have to rely on themselves a lot when I'm in pain. My goal everyday is to get them to school and to pick them up. Once we get home, if its a bad day, I go back to my room. If its a good day, I stay in the living room. They are 17 and 9 so they can microwave when they need to. They are ususally busy on their computers or PS3. They have to halp me a lot and I feel bad about that. (mostly the 17 year old but hes also spoiled rotten so I guess it evens out) I am looking for a new apartment this summer because this one has too many steps for me and on bad days I can barely make it up.

[aleet7]

Wow....Prelief really works! I have not had the nerve to try orange juice since my dx(I really miss drinking it)!

About my appointment...I'm really confused! My primary doc called to tell me that she was referring me to a spine center...but when I received the forms for my appointment, it seems as if I'm being referred to a pain management center! Anyway, I find out exactly what it is on Friday when I go.

My kids do pretty go helping out when I'm having a bad day too. I have 4 kids(oldest is 25, next is 18, then I have a 10 year old and a 6 year old). The oldest takes care of the young ones and pretty much do everything else. My oldest has autism but he is amazing with the kids and cooking! My 18 year old is about to leave the nest and go to college. She has a 3.73 GPA, speaks fluent Chinese, plays in the marching band, concert band and is studying film(has her first job shooting a trailer for a novel)! She's so busy so I mainly rely on my 25 year old. My husband has his own business...he is rarely home. Some days it requires that I go to the office to help out. I rarely feel good enough to go to work. I go to church every Sunday and some of the members can tell when I'm sick(I haven't figured out how to mask it yet). My pastor and wife know about my IC and DDD and understand when I miss church. It's hard juggling being sick and being a mom!

Best Wishes,
Aleet7

[tara73]

My 17 year old has Aspergers Syndrome and my 9 year old is PDD-NOS. I dont expect Clayton to leave the nest anytime soon. He pretty much does all my lifting for me laundry, groceries, putting things together, etc. Does your 25 year old get disability? I have been debating on applying Clayton for it. He does have a couple friends, he does not want to learn to drive, he does so so in school. Me and my mom are pretty unsure as to how we want his future to go. We want him to get a college education but he wants art school, which there are none here in Sioux Falls. We don't think he can live on his own and will likely be with either me or my mom. I have some problems with him due to his rigidity. Our biggest struggle right now is that when I say no, I don't have to give him a hundred reasons why he seems to think I do. Both my kids can't tolerate being yelled at, so I have to be careful with that. They are both noise sensitive. Clayton is an expert at drawing but barely squeaks by in everything else. Hes a junior this year. His drawing is all anime though so its not like hes rounded in that either. He is good at it but I dont think there are any colleges that teach it. Kaitlyn is a sweetheart but she can't make friends and has some kids that pick on her.

[tara73]

As for the orange juice I wouldn't put it on the ok list but try 3 Prelief and try a glass and see what happens.

[aleet7]

My oldest does get disability. I didn't know about it until his best friends mom told me to sign him up in his senior year of high school. I'm glad he gets it because it teaches him how to budget his money. He wants his own apartment but we're not certain if he's ready. He is good with laundry, shopping, cleaning or regular life skills. We do think that we may buy a house that has an apartment over the garage for him to live in. He wants to drive but we're not certain if he is capable. Like your children he does not tolerate yelling or raising our voices at him...he such a great kid we wouldn't think of yelling at him. He is very sensitive to me being sick and would wait on me hand and foot but I can't do that to him. He has to have his own life. He goes out with his childhood friends(they are all married now but still find time to go to the movies or to arcades with him.

I feel very blessed to have a child like him!

Aleet7

[tara73]

I will look into applying him for disability because I think its best if you do it before he turns 18 so he can draw off of my social security...I think but I'm not sure. My son, being 17, we have some disagreements mostly about what he can and cant do. Like he think its would be okay for him to walk to Barnes and Noble but it is across prolly the busiest intersection in the state (and I'm not kidding). So we do butt heads sometimes and sometimes I do raise my voice at him but he quickly reminds me not to yell at him. It's hard with Asperger's becuase they seem almost normal but you got to remind yourself that their thought processes aren't the same.

The driving thing, he decided on his own that he didn't feel like he would be able to concentrate on that many things (hes ADHD too). Did your son go to college? I want him to try and get into graphic design because he is a great artist but what he is good at is so specific (another problem with Aspergers). He spends almost all of his time drawing these Japanese anime or manga cartoons. But you cant really make a living with that whereas graphic design maybe he could. Of course then I will have to be driving him back and forth to school. There is a bus route in town but I don't know if I would let him do that. We're not in a bad town but I dodn't know if he would miss his stops, etc. And I've tried giving him a cell phone but hes not good at remembering to take it or use it.

Back to the doctor tomorrow. Hope he has something good to say. I fell on the ice again this morning. This time I landed on my knees so I am hoping my back doesn't start acting up later. I have terrible landlords. They didn't plow the last 2 times it snowed so the whole driveway is packed snow and ice. Will be looking for a new place this summer.

[tara73]

Update: Went to PCP today. First the last 4 days have been good almost thought I was headed for remission but then today I'm back to every 5 minutes. I do think the Prelief is helping though. Not sure why I am going so much today though. So went to the PCP and he says we are basically at a standstill. I have swelling in both legs so he put me on Lasix (a diuretic as if I don't pee enough). He did a bunch of blood work because of the swelling but all was normal. Urine test showed lots of blood but I told him that it always does cuz the IC. There is nothing else to do about the IC just live with it. Already tried the second opinion, etc. Going to start physical therapy tomorrow for my back.

[amy09]

Update: Went to PCP today. First the last 4 days have been good almost thought I was headed for remission but then today I'm back to every 5 minutes. I do think the Prelief is helping though. Not sure why I am going so much today though. So went to the PCP and he says we are basically at a standstill. I have swelling in both legs so he put me on Lasix (a diuretic as if I don't pee enough). He did a bunch of blood work because of the swelling but all was normal. Urine test showed lots of blood but I told him that it always does cuz the IC. There is nothing else to do about the IC just live with it. Already tried the second opinion, etc. Going to start physical therapy tomorrow for my back.

Hi! I actually used to live in Sioux Falls (grew up in NW Iowa) and my sister still lives there. I still see doctors there. Just wanted to let you know (if you didn't) that there is a female urologist in SF. Her name is Janet Smith. My mom has IC and saw her years ago. She's supposed to be pretty good. I have an appt with her next month so we'll see. Hope you feel better soon!

[tara73]

I'll look her up. Let me know how you do with her.

[BrandyDW]

I'll look her up. Let me know how you do with her.

I've been seeing Janet for almost Eight years now (from when i was 14). Granted I've been fairly lucky with IC but considering I go to Avera and she's essentially considered a Sanford doctor, my avera doctor wanted me to go to her. People from Minnesota, Iowa and other places travel here to see her.

You've already been diagnosed with the IC so you wouldn't have to worry about the cystoscopy but I'm sure between Janet E Smith - and her two nurses (Pat and Rhonda) they'll find something to help... Also the receptionist there is hilarious (went there once a week for over a year for Instills, got know them all a bit because of that)...

Anyhoo try her out - you won't be disappointed...

Nice to know that someone else in Sioux Falls has IC --- I mean i knew there had to be others but because of Hippa laws really knew nothing about them or there stories with IC..

Website for North Central Urology (where Janet has her practice) http://www.ncuro.com/

[tara73]

Update: Haven't been on in awhile. Been having lots of back pain. Then in addition to the IC I had to be put on Lasix (a pill that makes you pee more) because of the swelling in my legs. So I spend most of my days in the bathroom. Not sure if I already put this but my urogyn has decided there is nothing he can do for me besides continuing to order my med. Medicaid had denied both Interstim and Botox. I appealed their decision but lost the appeal being as it was me up against their lawyer and expert (I of course could not afford or find a lawyer). So now, I'm just kinda up in the air. Don't know if I should try a third opinion since the second didn't really go that well or just stay on my meds and not really do anything different.

[tara73]

Update : Wasn't sure if I wanted to bring this thread back from the dead or start a new one. But I wanted to update and seek support. IC has basically taken over my whole life now. After the denials for Interstim and Botox, I basically gave up hope. And decided just to live with it. I follow an IC diet mostly. Still have terrible urgency and frequency and pain. I just tried to work around it. I'd hold it as long as I could despite the pressure/urgency. So I live with a constant feeling of fullness. I was left with the understanding that there wasnt anything else my doctor could do.

About two-three weeks ago my spasms got out of control. I could literally feel my bladder throbbing. So I wanted a UA. I called the nurse at the urogyn and she had me come in for the UA. It was negative cept tons of blood (as always because of the ic). I told her how the doctor had said he didnt want to see me anymore, since we were out of options. I asked her to pull up his last appt motes and she read that he wanted to see me back after I appealed the denials, which I had already done. So we made an appt for last Friday. I told him medicaid had some things that me and the doc needed to do to get approval. He needs to see me once a month. Chart frequency and urgency and behavior modifications like following IC diet. They want me to keep a voiding diary and do home instills twice a week. And we have to do all this for six months then they will reconsider the Interstim. The doctor was nice and said he was willing to do all this stuff. So thats where we are at with that.

Around the last 4 months I have been getting terrible pain before and during my periods. I have to lay curled up in bed with a heating pad on. Well I had this pain Sunday night and took a bunch of meds and it went away. Last night I sat down to have dinner and had this sharp stabbing pain in the area of my left ovary. It came on abruptly and made me cry. So my dad took me to the ER. They did xrays,ua, pelvic ultrasound, bloodwork, etc. So while I was there when I went to do the ua I noticed my period had started. So they gave me a B&O suppository but that didnt work and then they gave me morphine which helped but of course wore off. They told me call the doctor today, so I did.

The nurse didn't call me back til later in the afternoon even though I said I was in pain. So the doctortold the nurse to tell me to take ibuprofen (like I hadnt already tried that) and to come in tomorrow. Why, so he can tell me why he cant prescribe anything that might work?? So I'm going in tomorrow with my sister driving because I cant drive like this and I guess just suffer for the night. I really wish there was a cure for IC. Feel defeated, depressed and hurt.

But I dont want to switch doctors as it will put me more months behind on getting the Interstim. I tried a second opinion a few months back but he knew less about IC than I know. Plus he is ordering my other medicine. Vag Valium, Vag Baclofen, elavil, Enablex, and Prosed DS.

Anybody have any advice??????

[Erica1836]

hey tara...I don't have a whole lot of advice for you because I'm going through the same thing with my insurance company. I've had about 15 hospitalizations since January but they don't want to approve a treatment. I would think the nerve block would be wayyy cheaper than all those stays.

I'm wondering why your insurance company won't approve the interstim. it's definitely been proven to help frequency and urgency. Theres tons of research on it. That just baffles me. My sister is an attorney...licensed in WV, OH, and PA. Not sure where you live but if you need advice she would be happy to help. I live with her so she knows what IC patients go through every day. And she has Chrons disease so she is even more understanding. I hope you start to feel better soon!

[Mothergoose]

It just makes me shake my head that insurances will repeatedly approve treatments that need to be done over and over again, and then not approve something that may work longer term, but maybe more expensive.

You would think they would be more inclined to pay for something that maybe cheaper for them in the long run, but they don't seem to see the big picture.

Medicine seems to moving more towards prevention of things, aiming towards preventing before people get sick, and screning to catch conditions earlier, when more easily treatable.

For example diabetus by interevining early and treating with life style changes in the early stages, can keep people healthier longer, which equates to less problems down the road, so cheaper on the health care system. The thing is the insurance company's have not got on board with this line of thinking the same way.

I don't know maybe they are worried about the premiums they can collect, rather than peoples over all health.

It is a hassel, I am dealing with a travel insurance claim for a family member, they try to make it so hard to claim I am sure they are hoping if they drown us in paper work and red tape we will give up and they won't have to pay.

Good Luck Mg