Diagnosed after 3 years of pain HELP ME!

[jcatherine74]

I'm 20 years old and after three years of doctors telling me I probably had endometriosis I found out I have interstitial cystitis. For the first year it was only pain during my period, in the last two years it turned into an everyday thing. I usually deal with it by crying through it or sleeping. I have been on so many pain meds in the past few months but nothing works. I live with my boyfriend and life has been so difficult with this. I am always sad and tired cause of the pain. I can't have sex without crying. I'm angry most days. And I can't work anymore. I am thinking about applying for disability cause I just CANNOT handle working with this anymore. I've been going to college online for the last year and now next week I will starting full time at a university near me. Can anybody give me some advice on ways to deal with the pain and depression. Any advice on how sex can be a little bit less painful too???? And how do you deal with the thought of it possibly never going away??? I'm on elmiron right now but it feels as though its making it worse.

[Shay123]

I understand how you feel. It really sucks not knowing the problem for so many years. It took me almost 3yrs to be diagnosed too. I'm almost 34 and have 4 kids ages 12, 10 6 & 3. I'm also going through a divorce, just today I won the custody battle against my husband:woohoo:!!! So now I'm raising them on my own. I have severe IC with Hunner's ulcers. The things that have helped me is Vicodin ES 4 times a day and hot baths. Sometimes I have to go to the hospital for stronger meds when I have flare ups. Try seeing a pain management specialist, I do. As for sex, sometimes you just have to do other things that dont involve vaginal pen... The one thing I think we all need is support from those around us, I hope you have that. I'm also going through the proceedings of getting SSI, right now I'm getting state disability. Good luck and I hope things get better for all of us, at least we know we got each other when we need to talk.

[brandiwithani]

hi j catherine,

okay I just proofread this thing and it is long, but here you go :)

I'm also 20 and was just 'diagnosed' with IC a little over a month ago. I say 'diagnosed' because it isn't for SURE, but my urologist has a strong feeling.. yeah.. I suffered from discomfort for 3 years before finding out what was wrong too.

I had a CT done and some kind of vaginal probe camera thing test, all kinda crap throughout high school. I was always afraid to go to the urologist because I do not like the idea of having a catheter put in. I thought for the longest that it would just heal itself, but it never got ANY better at all, so I finally decided to make a urology appointment. I didn't have a cystoscope or anything done. The doc has me taking amitriptyline hcl. I started taking it last month. I started with 10mg a night, now I'm up to 50mg. I kind of feel like maybe it is helping like 5%? But it may just be because I've come to terms with this problem and am just adjusting to it?

Ever since I was 17 and a junior in high school, I've been having these problems. It's like a continuous, literally non-stop uncomfortable pressure in my bladder region like I ALWAYS have to pee, 24/7. For the longest time I thought maybe my urethra was too narrow and urine couldn't completely empty from my bladder. That's what it felt and still feels like. I go to pee and I can pee and it's like ahhhh, but then it feels like it stops before all the pee is out. I can sit on the toilet for 25 minutes just sitting there squeezing out pee and it is SOO relieving when the urine finally comes out, but immediately after it leaves my urethra, the sensation of needing to pee is still right there. I eventually have to force myself off the toilet because I just don't want to sit there and spend the rest of my life on it.

I've found that it helps me a little when I try to hold my urine in for as long as I can before going to the restroom because of the inconvenience of feeling like my pee NEVER fully empties when I do finally go to pee.

My boyfriend and I have been together since I was 16 and luckily he is okay with us not being able to have sex as often as we'd like. Because of this urinary problem, I really don't even have the desire to have sex 95% of the time, so we just don't do. It's a strain on our relationship - but we understand it's just something we've got to deal with. Not trying to get too personal or anything, but have you tried to have your boyfriend perform oral sex to you right before you two plan to have intercourse? That tends to get everything going so it's not as painful for penetration. If your body isn't totally feeling it, it's going to hurt to have sex. It does for me, anyway. Also, don't try funky positions, missionary seems to be the least painful and most enjoyable for me.

I totally understand what you are going through and it is no fun at all. I used to enjoy going places and doing things with friends, but now if my friends want to hang out, they have to come to my house because it just hurts too much to go anywhere.

I will be a junior in college this coming semester and I only have had monday wednesday friday classes. I commute and it takes about 30 minutes to get to school. I'm nowhere near being as active as I would like to be on campus because of IC, but that's just something I have to deal with. :( I pee between every class and can't wait for classes to be over so I can go pee again. Getting in my car at the end of the day to go home is the BIGGEST relief everyday because I know I can just go home, take off my pants and pee whenever I want to and take all the time I need in the bathroom. I've also found that if you take about 4-6 sheets of toilet paper that's still connected and fold it into a nice wide rectangle about the size of you palm and placing it against your vaginal/urethral area and applying pressure and leaving it there (like, leave it there like you would a tampon) helps with my pain. The pressure against my urethra helps for some reason?

Btw, be careful using Elmiron. One of it's side affects is hair loss. I'm not sure how many patients taking Elmiron experience this, but I think it's common.

Anyway, hope this info helped at least a little bit.

-Brandi

[brandiwithani]

I also forgot to add that not drinking any alcohol helps with my bladder because alcohol makes me have to pee like crazy anyway. And anything citrus-y like lemonade and orange juice causes my bladder to hurt more. But I love eating fruits and vegetables, so when I want something acidic, I take Prelief. You can get it from Wal-Greens, it says it's for heartburn but it says "takes the acid out of food" so it helps me when I do decide to have something acidic or an alcoholic beverage. I don't drink anything at all now though because of the discomfort it causes. I've never been a real big drinker anyway, so it's not hard. :P

[jcatherine74]

I cried when I read your post. I mean its sad that you have it too but so good to find somebody pretty much in my shoes. I've also been with my boyfriend since Im 16 and reading your story was like insane cause there's just so much in common, I wish it was all positive things. Thank you so much for your post and your advice It was and will be extremely helpful. I would love to keep in touch with you and maybe we can help each other through the really difficult days. How have you done with working??? I have had so much trouble I am in the process of trying to get disability. I don't struggle as much with the frequent urination as the pain. The pain is just horrible. I also dont really spend much time with friends or going out. I was diagnosed because I went through laprascopic surgery for endometriosis. The specialist I went to said my symptoms also fit IC so while he was in there he did the test where you fill up the bladder with fluid to look at the wall. For three years I thought I had endometriosis and I had planned to get married next summer and even have kids because of it and in one shot that was all gone and it was something totally different!!!! Also I am a sophomore in college and I also scheduled my classes so I wasnt in a classroom too long to avoid the pain.

[He11oKitty]

Your story sounds exactly like mine!
I turned to acupuncture when modern medicine did little to nothing for me,or sometimes made things much much worse ::::shudders at the horror that was DMSO instillations::::::
I was ordered a blood test and my white blood cell count was high. Well long story short, I pieced it together that my IC was actually caused by an antibiotic-resistant bladder infection. The infection was killed once I took herbal antibiotics given to me by my acupuncturist. After about a month of healing from years of damage, my bladder is back to it's fully healed state. No pain, not even during sex anymore (yay!) lol.

If you take an at home UTI test and you get positive for leukocytes, but doctors tell you there is no infection present, it is a possibility you might have what I did (antibiotic resistant bladder infection). Good luck and stay positive!

[ICNDonna]

If a culture is done when infection is even suspected, those antibiotic resistant bacteria will show themselves --- and a sensitivity test will determine which antibiotic will be most effective.

I think the thing that helps me most is the IC diet. It can be a challenge, but it's absolutely worth the effort. You'll find the link to The 2009 IC/PBS Food List in my signature below.

I was diagnosed with IC before most of you were born. :)

Donna

[jcatherine74]

I find that one of my most annoying problems is the extreme back pain I get on both sides of my lower back. Do any of you have this problem??? I'm worried that it has something to do with my kidneys since IC is the urinary system.

[ICNDonna]

Catherine, you really need to talk with your doctor about your low back pain. It may be referred pain from your IC, but you really need to KNOW that.

Warm hugs,
Donna

[jcatherine74]

He11okitty! Love your name lol. I'm happy that you found relief that is so great for you! It must feel great to be back to normal. Unfortunately that was ruled out with me. I found the IC by surgery so many blood tests were done and urine cultures. So it's def not an infection. I am on elmiron right now for the IC but it doesnt seem to be working yet. In fact some days it feels worse, hopefully I'll notice a difference before all of my hair has fallen out!!!!! (from the elmiron)

[brandiwithani]

jcatherine,

Sorry it took so long to respond. I went to the beach for the weekend with my boyfriend for our 4 year anniversary which is today. :)

My post was not intended to make you cry! But I'm glad that we aren't alone with our problem. It's crazy how much we have in common, even if the common-ness is sucky! :P I'm glad you enrolled into classes where you wouldn't have to be there long, that will help you out, I think. As odd as it sounds, once I get up and get dressed and finally get moving, it's easier for me to look beyond my IC pains. Even though they are there throughout it all, I try to hold it in and forget about as long and as much as I can. It really helps to have someone with you that understands what you're feeling and why you aren't totally up to par with hanging out. I'm really glad you have your boyfriend who has been there with you through it all. I don't know what I would have done without my boyfriend through this rough time. You said you were planning to get married and have kids next summer. Are you happy that you found out it that it wasn't endometriosis so that you can wait to do all those things? I'm sorry that your pain is so terrible. My pain is more of a continuous discomfort like I need to pee. I would love to keep in touch too, that would be nice! :) My doctor prescribed me darvocet for my back pain because I've got huge boobs that cause my neck to hurt like WHOA and the darvocet have helped my bladder pain a little and didn't touch the back pain. I can't wait to tell my doctor that the darvocet helped me a little with the pain. It may just be a placebo affect, but I'm hoping that it's a combination of the 50mg of amitriptyline and darvocet. I still have continuous pressure and discomfort in my bladder and pelvic region, but it's a little easier for me not to think about it as much while I'm on the meds. I know how it is not getting to hang out with friends, especially when your friends don't really understand or even believe that you have a problem... As for working, I luckily have never had a job yet, so I don't know how to deal with IC and working. I've wanted to get a job for the past 2 years but I just don't know how that would work with my pain and needing to go to the bathroom so much during work hours. Anyway, my email address that I actually check is BLStewart90@gmail.com. I'm on facebook too, you can find me there using the email addy elphinmajick@yahoo.com. Hope to hear from you! :)
-Brandi

[flareoff?]

Hi!!

As someone who is undiagnosed - although my urologist is pretty sure. and am 18years old i thought i'd read around some of the posts - i'm going to university next year and IC has only really been affecting me for a year - but it has been the worst year of my life.

I too am in a long term relationship where all of this has steemmed from really - i waited till around my 18th to have sex for the first time - i used to have very small flares when i was younger but they would be very mild and wouldnt last more than a couple of hours, i would best describe them as mild discomfort.

However when i started having sex i began having painfull flares that have continued to get much more painful - even when i refrain from sex with my boyfriend for a longer period of time i still experience the flares. therefore it was natural for my GP to believe this was just a bout of cystitis that could be cured with antibiotics.

Unfortunately, 8 bouts later they had to refer me on and 1 bladder distension and 1 tonsillectomy [due to downfall in general health i went through 5 bouts of tonsillitis in 6 months] later and the trial of
Regular Ibruprofen
Tramadol [Zydol]
Tamulosin
Solifenacin
and now Amtripolyne

I feel this is a strain on my relationship with the one person i saved everything for. I too have nights where i just cry through everything - i feel totally helpless and just want to hit people when they come out with things like
'well stress never helps'.

Honestly, anything i can do! even if its a chat and any advice you could give me - that would be so helpful especially in relation to the whole improving intimicy with your boyfriend and reducing the pain of flares- as although i can state there are problems with sex to my 60yr old male urologist - i dont feel totally at ease with discussing improving sex.

the only pain reliever that does anything for me is tramadol - in a sense that it makes me drowsy and leaves me feeling sick! this takes my mind off the bladder pain!!! Sounds horrendous i know. but its the only reliefe i ever get coupled with my heat pack.

Thankss

A x

[angryflamingo]

Hey there, I've been in the same boat as you have. Especially the relationship part of having IC. I recommend trying a half teaspoon of baking soda in some water when it's really bad, because that really works for me. Going to class was hard with the pain stopping me, but then I found the baking soda trick. It really helped me and I hope it helps you.