No urgency but burning! on meds too

[nikki0522]

Hi everyone,

So i have a few questions, i just started elmiron on thursday also with atarax and elavil and I dont know which one it is but it has taken the urgency away and I feel great. But when I dont take the elavil and I have a flare it just burns without urgency or anything. Has this happend to anybody else? My dr perscribed me the elavil just for bedtime but if i dont take it 3 times a day with the rest of my meds it feels like I will get the burning later on. i dont know if its all in my head that it is actually working or what. My dr didnt give me any advice on what to do with the pain and he said the reason he only perscribed it at night was because he didnt know how it was going to affect me, it says it can make you drowsy. But it hasnt affected me like that so I have been taking it when needed.

Also how do I make my husband understand? He says he does but when I cant be sexually active he gets "upset" not real bad but you can tell he is disappointed and now we just dont have sex at all! We are going to marriage counseling for other things also but I just feel like he has no sympothy for me and my problems. I think he thinks I am faking it just not to do anything which is crap. I try to tell him about it but I know hes not listening because we will go out to eat and he wants to order an appetizer with tomatoes and when I say I cant have it he just says a little wont hurt but I know it will. Im just so frusturated.:rant:

Any advice on any medications would be great! Thank you!

Nikki

[ICNDonna]

Elmiron can take up to six months or longer to become effective, so my thought is that it's probably the elavil that's helping. I hope it continues to work well for you.

Donna

[izazen]

I had very good luck with Boiron's "cantharsis."
Its a homeopathic remedy, costs $6.00 at Whole Foods.
Be sure to get Boiron and no other.
It puts burning away for me within an hour or so.

[breannavich]

you can take eavil at anytime during the day your doc was probably suggesting to take it at nightime because it can make you very tired especially the first week or so. when i first was taking eavil i felt the same way as you; like waiting until before bed would make my symptoms act up. so i started splitting my dosage taking one in the afternoon and one before bed. i think you just have to figure out what works best for your body which can take a little bit of time. i am back to taking eavil only at night personally.
i think one of the hardest things about ic is making others understand how much it affects your everyday life. my boyfriend is very supportive but he still doesn't understand how much food and drink can affect me. for example, i have started only drinking bottled water because tap water bothers me..but sometimes when i run out and say i need more he gives me a hard time saying water can't bother me. i found it really upsetting in the beginning as well because i looked healthy but was pretty much confined to the couch. you just need to have a heart to heart and not be afraid to speak up. i used to feel bad about not always being able to be intimate..but since i sat down and talked about it with my boyfriend he has not problem backing off if i say i'm not feeling well. he asks if i'm feeling ok and if it's ok to keep going.
i know how easy it is to feel upset when you think he's disappointed if you can't be intimate, but being in pain is just not worth it. and that's something he should be able to understand.

[valkay18]

Yeah, I agree that it's probably the Elavil that is working. That's great that you've got something that is working for you!

Regarding your husband, the comments like "a little won't hurt" are very insensitive. Hope the counseling helps! I know a lot of people who have gone, and they say it has done a ton of good for them. Good luck!!

[nikki0522]

Thank you all for your responses. I have had a heart to heart talk with my husband but he says he doesnt care if we dont sex but I know he does. But like you said its not worth the pain. I just dont think my husband is that guy to give sympathy because I had a 13 hour flare last month because I had a UTI on top of my IC and I told my husband and he still stayed at his friends house playing poker. I just wish he would take more time to actually know what I'm going through. He just doesnt get it and it hurts me that he wont even try to hear whats wrong with me, yea know? I hope I made sense here.

About Elavil I just got it prescribed to me on 4/8 and in about a week and half I will be out and it was 30 pills and only taking them once at night so that is a thirty day supply, im just scared that the pharmacist isnt going to give it to me when I need a refill. Do you think they will do that??

[pdxmom]

I took me a while, but I discovered that a significant part of the burning I had was in my urethra and vagina. If burning is your problem now, you might try using a vaginal moisturizer, such as Replens, for a week to see if it makes any difference. My pain only started to get better when my uro-gynecologist prescribed me an estrogen cream. It got better still when I supplemented that with moisturizer. I used the moisturizer *every* day that I didn't take the estrogen. I don't have to use it quite so often now.

My IC started when my bladder was injured during a c-section--but simultaneously my hormones plunged after the birth and then stayed low due to breastfeeding. I think doctors usually overlook that the symptoms of dryness (usually from perimenopause and menopause) can be really bad. These symptoms are similar to those of IC--burning, frequency, and nocturia. So if you've got both things going on at once it can really be a double-whammy.