Depressed and discouraged...

[CarolineJulia]

I was just diagnosed "officially" with ic on Nov 29th... my symptoms had been flaring hard for about a 2 months before diagnosis. I started on elavil before getting diagnosed and then added atarax and elmiron to my list.... I was feeling pretty good for a bout a week... just less symptoms, able to forget about my bladder for a little bit here and there and urinate way less frequently (Also had been adhereing to the diet really strictly). However, yesterday, I tried having sex for the first time with my ex. I was suprised when it didn't seem to hurt that much.... however... about an hour afterwards, I felt as though a boxing match had gone on in my bladder. It literally felt as though my insides had been beaten up and were all bruised. My frequency has also shot through the roof again.

I feel so miserable and useless. I was feeling positive about things getting better, but today I am reminded of yet another thing i.c. has taken from me... I love being physical and close to people. I know there are other ways to do this besides having sex, but it's hard for me to imagine meeting somebody who wants a girl who can't have sex when I'm 23 years old. I just want my life back... I want my body back... I hate being in pain and I'm tired of having to make room for this unwanted, permanent visitor.

I'm sorry this is so depressing... but I'm just in so much pain right now. I feel like crawling into a hole and sleeping till this passes...

[meme]

I'm sorry to hear that you're feeling bad. Its hard to be so young and have this disease (I'm 26). It takes so much away from us. I get really depressed a lot too. It sucks how I can feel so good for a week and not have any flare and think that maybe its going to get better, then BAM it hits out of nowhere. Its so frustrating. Sometimes after sex I ache too. Doc put me on Macrodantin to take everytime I have sex to avoid getting infections. It seems to work good for me. I've noticed I actually feel a lot better the next day after I've taken it. We're on about the same meds. I don't take atarax though. The Elmiron took about 4 mos for me to notice it helping, but now with the Elavil its really making me feel better, most days. Sometimes a flare will just hit for no reason, and its like, come on, I haven't done anything wrong, why is this doing this to me again!!! I hate having IC. It takes so much out of me just dealing with it everyday. Hope you get to feeling better.

[CarolineJulia]

thanks for your kind words, leah. sorry to hear you that you know what this is like... it's hard being young and having i.c. (or any age for that matter...)

does anybody know how long a sex flare lasts?? i know it's different for everybody, but is there a chance that it usually goes away quickly?? i'm begging for that right now. i might have to miss my exam tommorow. i am so angry at myself for even trying to have sex.....

[ICNDonna]

Hopefully you will feel better very quickly. Have you read the information in the Patient Handbook about having sex? If not, I suggest you do --- there's some excellent information there.

Donna

[kjd]

Caroline
I know its hard suffering like this at such a young age, (I'm 24) but after time it does get easier!
You have only just been diagnosed so I can imagine right now you have lots of emotions going on in your body, maybe anger (why me??!!), frustration, possibly relief to finally being diagnosed??!!
Anyway I still feel angry, frustrated and useless and I dont think I will really ever get rid of those feelings but I can now control them!
When I was first diagnosed with IC and vulvodyina I couldnt have sex for 13months and was terrified my boyfriend would leave me, I put two stone of weight on as I couldnt do any exercise (I used to be a runner) and lost all of my confidence. I was so depressed I didnt want to live with the pain anymore and wanted to be "normal"!
i wanted to do what any normal 24 year old does but I felt like IC was taking over my body!

Well I can positively say that I now have some good days where I am pain free and this is after trying lots and lots of different medication and creams etc but I can now have sex!!!!!!

I can promise you that it wont be this hard all the time and you will have pain free days too you just need to be patient and try to stay strong and positive!!! Dont be too hard on yourself. Just because you had pain after sex does not mean you are useless! You are an amazing strong lady to cope with IC and you will be able to fight this condition after time!

Just take each day as it comes and try to make a diary of foods which cuase you pain etc. Avoid any soap or irratants as this would also put you into a flare

take care

[CarolineJulia]

i just wanted to come back and thank you guys for your support and kind messages. i am feeling much better today (and was also feeling good yesterday). however, when i was having one of those "i'm so overwhelmed by this ic and i don't know how i'm going to deal with it" days.... your replies were really comforting.

kjd, you are so right! it's all about taking things one day at a time. i am learning what it really means to be patient.. and what it really means to be strong as well. each day is a battle and some days it feels like you are winning... other days.... this thing gets the better of you and you can feel pretty helpless. i just try and cherish the good days as much as i can!!!



hope you are all feeling good too and thanks again for your support.

love and light,

caroline.

[rachann]

I am 26 and was diagnosed at 21. I am on all the same meds. I have gotten so depressed over this issue that I told my husband to divorce me. He absolutely refused and said that I would have to divorce him! He is my angel on earth.:angel: I have learned to not have sex right before my menstrual cycle. Also, giving Elmiron a few months to kick in helps. Antibiotics after sex are a great preventitive measure. I constantly get uti's. Taking Azo or Prosed DS a couple hours before sex helps a lot with pain and urgency. I have also found that putting a cold washcloth over the vagina afterwards helps.:smile tee We are all in the same boat ladies and it is so comforting to know I am not alone!:grouphug: :grouphug: :grouphug: