I don't want to live like this.

[jenjen05]

It's one of those really depressing days for me. Day 9 in full on pain and urgency flare. I just keep crying. No doctor wants to give me pain meds. I feel like going to an ER and telling them to just cut my damn bladder out. It doesn't work right anyway, who needs it?

I'm 24. I feel like I never got a chance to live my life. Or have any real fun or do anything or go anywhere. I'll never experience some of the amazing things all my friends are talking about and doing. I've been in constant pain for the last 3 years, vaginally, bladder wise, or back wise. And I just don't know how much longer I can do this. I know there are people worse off than I am. I know that. And I know they do it. But I have been through so much in my 24 years. More than I would ever wish on the worst person on this planet.

I am in so much pain. My mom keeps hollering at me to get a full time job. Even if I could find one in this economy, how am I supposed to keep one? And doing what? I can't sit for long, I can't lay down for long- I pee every 15-20 minutes or more. Who's gonna hire me? Who's gonna keep me after they hire me with my constant potty breaks? I have no choice but to have a full time job. I have to earn a living. But how????!!!!

I'm not suicidal or anything. But sometimes I do wonder what it would be like to just go to sleep and wake up in heaven in no pain.

I want to rewind to June 2003 and redo all the wrong choices I made. Maybe IC wouldn't be in my life if I hadn't screwed up so miserably on so many levels.

My boyfriend and I have been trying to do sleep overs at his house. Only problem is everytime he watches tv beyond when I need to sleep or when he moves in bed I wake up. And can't go back to sleep cause my bladder hurts. And then I just cry softly. We've been together two years, and he's really good about everything I'm going through... but he asked the other day.... "When we get married, how are we supposed to sleep in the same bed?" Good freakin' question. I guess we don't?

The last few days I've just been crying myself to sleep. My mom keeps telling me to stop feeling sorry for myself. Easy for her to say. She gets 160 oxycodone every two weeks for her pain! I wouldn't feel sorry for myself nearly as often if I had a break from all the pain I'm in once in a while!

And I know what some of you might say... you should go in for a rescue installation... except I have a super super tiny urethra and the pain from being cath'd is unreal. I let them do it once, and I might as well have just stuck with the bladder pain because even when that subsided a little, my urethra burned so bad I thought I would just cut that little sucker out myself. I had to pour cups of near boiling hot water over my crotch just to pee for three days after that. And by then my bladder was back to hurting full force again. Installations are a waste of time for me and just cause more pain.

Maybe counseling would help? But what is someone pretending to care gonna do for me. Seriously. Someone who doesn't have IC is just gonna look like a gold digging "Oh I'm so sorry you hurt" idiot to me. Yeah, you're not sorry I hurt. You're making 100 bucks an hour off me because I DO hurt. Your wallet is thrilled. Everyone around me thinks I should suck it up and the last thing I want is another person telling me that. You try and suck it up. Don't you dare act like you know what I'm going through or how much pain I'm in or what level I should be able to function at everyday! Until you have this disease, you cannot pretend to know or be able to sympathize with me. Yeah, that's what I'd probably say in a therapy session. And then there endth the session.

Angry much? Oh yeah. I feel that too. I don't know whether to punch a concrete wall or cry into my pink Cinderella pillow. Perhaps both is the answer.

Yeah I'm all over the place rambling. I'm just writing it as I feel it.

Next time I see my urologist on the 27th I'm going to tell him that he better fix me or else. I mean it. He better fix me. Fix me or take my bladder out. I'm not doing this. I refuse. He better treat me for all other possible infections, diseases, illnesses, etc just to see what happens. I'd rather pee into a bag for the rest of my life than be in pain. Maybe I could bedazzle it or something. Or get an Ed Hardy crystal decal to put it in. Oooo or I could put little Juicy Couture charms on it. Or both. Oooo. Kinda puts a damper on beach going though I guess. But I'll give up my Florida beach bunny ways to not live in pain.

I'm gonna go spoon with my dog. And let her lick me till I stop crying. She hates it when I cry.

I hope the rest of you feel better than I do. This stinks. None of us should have to deal with this. None of us should have been dealt this card. No one should have to live in pain for the rest of their lives or modify their diets or pee a gazillion amount of times a day or not sleep at night or anything. Someone better cure IC and fast. Seriously. Good night and good luck.

[Briza]

:grouphug:
I wish I could help.:pray::pray::pray:

[dyno]

I am sorry you are having a bad time. Just don't give up. There are many treatment options and if your Dr. can't find an answer for you maybe seeing another one for another opinion might be an option.

Many have good luck with Hydroxyzine and Elavil in combination with other things. Like I said, many options.

[cinnamon8]

Buy the Intersistial Cystitis Survival Guide and ask your mother to read it. Or gently ask her if she would sit with you for a minute and read this site. I'll tell you what...I don't think my boyfriend really had the foggiest idea of what I was REALLY going through until I asked him to check out this site. He is still clueless, but at least your mother will see in print that this can be a dibilitating disease and hopefully will be more understanding. I feel for you having to go through this and I am so happy that you found this site. I'll be thinking about you sweetheart.

[jenjen05]

Thanks to everyone who responded and for your well wishes. They are appreciated. :)

Dyno, I've tried Elavil and had no luck. Plus I live in Florida and I cannot stay out of the sun. Elavil gave me severe sun burns with even walking in a parking lot for three minutes on my shoulders and face- and that's while wearing sunblock. It's just not feasible even if it did work.
This is my second urologist and he is considered the best for IC in my area.

If anyone wants to chat ever message me and I'll give my cell number. I have a Blackberry too so if you have BB messenger service I can give you my pin code too so you can add me to your friend list.

[Bekah79]

:grouphug:

[Preacher-Girl]

I'm sorry this is happening to you. I have an idea - I don't know if you have tried this. I take a drug called Meclizine. I believe it is really just OTC Dramamine. It is an anticholinergic. It will slow down your frequency and make you very tired. When things get really bad, I take it at night. It is the only way I can make it through the night. It keeps me in a deep sleep and works for frequency. If you don't have retention issues, maybe you could give it a try? I will look up Dramamine online to make sure all this is correct.

[Preacher-Girl]

Dramamine and Meclizine are like sister meds. Since it is OTC, maybe you could ask your pharmacist if it is alright to take with any other meds you are taking? Apparently, Dramamine will make you more tired than Meclizine. I'm hoping that means better sleep for you if you try it.

Also, I would find a general practitioner you like and stay with him/her. Eventually, they will prescribe pain meds when they know you well enough. Specialists are always trying to pass the buck in the pain mgt. area.

CAUTION: You should not take dramamine with Atarax or Benadryl. That I know from my uro.

[ICNDonna]

You seem to have an opinion about counseling that is not really true. If possible, I think a psychiatrist would be a good idea for you. It sounds like you may be suffering from clinical depression and there is help for you.

And, regarding sharing a bed --- there are actually beds out there that you can put a cup of water on the bed and jump on the other side without spilling a drop. Another alternative is to put two twin beds against each other.

I'm assuming you are following an IC diet. I know it can be a challenge, but it can be done. I have diabetes, as well as IC, so my diet is VERY challenging. It's really worth the effort.

Warm healing thoughts,
Donna

[elamar]

I so know how you feel - I was in your shoes when my "IC" appeared out of nowhere. I was perfectly healthy and just woke up one day with what felt like a uti - one that has never gone away. I quickly wound up peeing every 10 minutes around the clock for days at a time. And Drs. telling me that there was nothing physically wrong with me - ugh - it is not normal to pee like that! I had been given ditropan xl (generic) and told to take one per day and another doctor had given me utira-c (there is also prosed and urelle which are basically sister meds). Out of desperation, I started taking up to 4 ditropan throughout the day, along with 4 utira-c per day. After about 2 weeks on this, the constant spasms finally started to calm down. I was then able to slowly wean off the ditropan while staying on the full dose of utira-c. After some time, I was then able to wean back off the utira-c to where I usually just take one per day as maintenance. Do be careful, the ditropan can cause contstipation at the higher levels. You might want to considering being on mirlax if you want to try the ditropan. The ditropan will also leave you with a dry pasty mouth - to me it was worth the trade off in side effects! Once you lower the ditropan back to one, most of that dry mouth sensation went away for me. I too went for years with no doctors ever giving me pain medications. The only type of pain relief I would get is from the antispasmoics and once in a while someone would precribe me tramadol. I too wanted to strangle my doctor when she asked me "would you like to talk to a therapist about your pain?" Like that's going to help!! I bascially said no, I don't want to talk about my pain, I want to take something for my pain. By the end of my time with that doctor, she called me a drug addict - even though I had never been given any pain meds. So how could I be an addict if I had never been on any pain meds? I hope maybe the above method can give you some help. Of course you'll proabably want to check with your doctor about it first. I just found some of us just have such severe spasms that you need the massive amounts of antispasmodics. I too am not able to tolerate being cathed. I don't have a small urethra or anything, I just start to spasm violently when cathed. I tried instills at various times and just couldn't do them - the mixtures were fine, I just couldn't be cathed. I'm sorry you have to suffer like this - I have been there. I just stumbled on my own treatment out of desperation. Good luck to you.

[leelee88]

Sounds like you are in that dark place I was a while back, please do not loose hope.. I know you have tried some meds BUT there are MANY more out there to try. I have never relied on Narcotics even though I WISH at times I would have had them, but my Drs for some reason do not scripted them for IC.. But anyhow, I did work through it. I changed Drs a few times and meds many times until I found the combo that has worked really good for me AND the diet. And by the looks of my bladder pictures I have severe IC. But today I do feel like I am alive again. It does take time so hang in there.. ((((hugs)))

[bluetou]

Lots of ((HUGS)) and prayers your way. I can hear and feel your pain in your post. I send you lots of healing vibes and positive thoughts.

I know you mentioned you were trying to follow the ic diet. A huge challenge is trying to incorporate the IC diet fully and getting rid of all those trigger foods and drinks that may cause a flare. Maybe really committing to the IC diet will help take away some of your discomfort. It is amazing how foods and drinks can cause us such pain.

Can I also suggest doing a gentle yoga program. Yoga has saved my life (along with the IC diet). Just learning to breathe correctly and stretch really helps create a calmness within the body and ridding yourself of declutter and stress (which is also a HUGE trigger for ic pain).

Peace to you
Blue
:pray:

[jen74]

I am so sorry you are feeling so bad. I know how you feel. Last summer I was in extreme pain, it was to a point where I was praying every night for God to just take me. I cannot believe so many doctors are soooo ignorant with not wanting to give out pain meds to a person who is in agony. I wish those doctors would have to be in our pain for about a good year and see how they feel then!!!! I bet they would be taking all kinds of pain meds huh???
Have you been tested for a infection? I really hope you feel better soon.
Jen

[glassd18]

Hang in there Jennifer. I know it seems hopeless, but it's not hopeless. I have been suffering a huge flare the last few days, and I know how it feels. Have you tried Prosed DS or OTC Uristat? It really helps to calm things down. You need a prescription for Prosed DS from your uro. Uristat you can buy OTC, but read the directions carefully, and always ask your doctor if it is okay to take with your current meds. The other thing that I know about myself is that at the beginning I stressed so badly, and this made things MUCH worse. I ended up in my gyno's office crying my eyeballs out, and she told me I could take an Aleve, and a Tylenol together just to help me get a night sleep, and I slept for 12 hours that night!! She also offered to script Ultrim for the pain, but I refused those. There are so many options. Use an ice pack on your pelvic area and take deep breaths while lying flat on your back while trying to relax. There is nothing wrong with a good cry either!! It's obvious your Mom does not understand so keep that in mind. As others have mentioned you might ask her to read some material on IC or leave some reading material out where she might see it and pick it up on her own time. It is a good idea to get counselling if you need to as they can listen without judging, and help point you in the right direction. You can PM me if you like and you can call me if you want. Just PM me, and I'll give you my number or I can call you. I hope you feel better soon sweetie!!!

[Zygala87]

Jennifer I believe Preacher-girl gave you a very good idea. Please get a Family Doctor (general practition) They get to know you very well and seem to understand the need for pain meds more then other Doctors. I have pain pills and I rarely take them but knowing they are there makes me feel I have a net to fall into if necessary. It's been my experience that Urologist never prescribe pain meds. I'm sorry to have to say this but to heck with your Mother & boyfriend right now. Start caring for yourself first. When you are in a more comfortable place you can explain better to them what the heck is going on with you. After my OBGYN found I had IC due to a hydrodistention I went to our Family Doctor and flatly told him I was depressed and in great pain and expected him to help me with this and help with the pain. My OB and Urologist would not give me the relief I needed. He was most understanding and has been keeping track of my health. I supect he is watching how much narcotics I'm taking and checking my liver because many of my meds can cause damage there. That office knows me well now and they care. That seems to be the best part of having a Doctor who knows and understands. I don't know if you have good insurance but if you can find a good Family Doctor you will need to keep going to them often. I see mine every 3 months and more if I'm having troubles. You may be down but not out. Being worried about what your Mom & boyfriend think just adds to your stress. Stress & pain accelerates unless you find relief. You have IC it does not have you and don't let it. Don't give up, fight this darn thing until you are in a comfortable place in your health and heart. We care. Please keep us up on what is working for you. Big Hug, Ziggy

[jenjen05]

Preacher-Girl-
I will definitely look into Dramamine.

Donna-
Can't really afford a new bed. I had just got a new one a year ago and so did my boyfriend for his house. Le sigh.

I've been to counseling before and got nothing out of it. All the one's I've found want 100+ a session and want me to go a minimum of once a week. I don't have 10 a month let alone 400. My mom is on medicaid and has cancer and copd and we have no money. I heard somewhere my state has a program for some free counseling sessions I'm trying to find out about.

Elamar-
I already take Miralax and all it seems to do is soften my stool, not actually help me go. I have severe IBS-C already, so I can't really take drugs that cause constipation.

I've tried Tramadol too. It somewhat helped. Got some from a friend with severe back pain. My doctors refuse to give me that drug too.

bluetou- I do wii fit yoga every other day :-)

glassd18- Uristat, Urelle, and the like don't work at all. At all. It's strange, they seem to help other people. In fact, Urelle nearly sent me into liver failure when I tried it. Took one pill and my pee didn't turn the blue/green color for 14 hours. Instead, my eyes turned yellow and I had to go to the hospital. My liver no likey Urelle.

I'll definitely ask about Prosed DS.

Thank you, I'll be PMing you.

Zygala87- I have a primary care doctor who will also not give me pain meds.


To answer whoever brought it up, I do not have medical insurance. I have applied for and gotten insurance a few months ago through United but cancelled because there was no point to the 680 every three months for them to only cover my endocrine system. Because of preexisting conditions no company will cover me gynecologically, gastrointestinally, or musculoskeletally. Luckily my urologist has been kind enough to leave a formal diagnosis of IC off my paperwork so I may have a chance if I can find a good full time job of getting health insurance and getting my new job's company's insurance to cover it. We shall see. I just need a job with medical benefits.

I'm not without hope, I'm sorry this post sounds like "No, I can't because" the whole time. It's just that I've tried some stuff already. I'll keep trying, it's just exhausting, as I'm sure you all know.

Still flaring too. Good news is I got 5 Norco's from my friend's husband who recently had back surgery because they made him sick. So at least I'll catch a break from pain for awhile. I really need a little break from this.

Thank you to all of you for all your kind words and well wishes. They are greatly appreciated. It's why I come here. Because you are the only one's who really can understand. And while I'm thankful you do, I wish that you didn't at the same time so you'd be pain free and wouldn't know this illness :-)

I ordered the IC Survival Guide online and the book about explaining it to your partner. I had a Visa gift card left over from my birthday I used :-) Yay giftcards!

xoxo

[dyno]

I am sure you already know this but I have to say it, you should never take other peoples prescription medication.

As you yourself have said you have had medication reactions. You should work closely with your Dr. and not take anything without his/her knowledge.

That said, I hope you find some help soon.

[BeverlyJ]

Honey'' all I can say is if you are in that much pain to whare you can't seem to get any kind of relief.... you should go to the ER......and as for counseling it is very helpful to many'' and Your right'' many people without this disease have no clue is to how we feel on a daily bases and it's very important to understand that family is the biggest support for us....Mabey your mom needs to go with you to one of your Dr. apointments so that your Dr can fill her in on life with IC. God Bless you....and may he touch your heart with pain relief. :pray:

[cinnamon8]

Because of preexisting conditions no company will cover me gynecologically, gastrointestinally, or musculoskeletally.

what do you have that they won't cover you honey?

[VickiB]

I feel bad that you're in this position! It's a terrible place to be!

I can also relate. At one point I was so much in pain, so angry, frustrated, etc, that I went in to the doctor and flat out told him I was sick of this. I wasn't going to live like this anymore so we either had to figure out what was happening and fix the %#@& thing or just cut this sucker out! I was done! Funny thing was, that's like the point they finally began taking me and my pain seriously. Guess I'm saying, this might be what you have to do too. Then again, on the other hand they might decide you're crazy and not want to deal with you. I don't know. It's just frustrating when you can't seem to get off of the pain rollercoaster!

I don't know what treatments you've already tried. I do know many people have to travel a long road, trying this & that, before they find something that works for them. I'll pray that you find yours soon!

:grouphug:
Vicki

[Trishann]

Jennifer

I had an issue about being able to sleep, it was awful. I finally went to my doctor about this problem and he gave me a prescription for sleeping pills, couple hours of sleep is worth it, it literally was a life safer. :toilet:

Trish

[icgennifer]

Hi Jen,

My name is Jen too (With a G).

I totally understand where you are coming from - IC is terrible and all of us on here understand your pain.

I am 28 and often think about the bad choices I may have made, but I don't think it's the bad choices that have brought IC on us. I totally understand what you wrote in your last post. I'm young too.. and I get so frustrated when I see my friends living with no pain... they don't know how lucky they are, right?

I used to sleep over my boyfriend's house (just like you) and it's tough.. some days are better than others. I too have cried softly in my sleep... I try not to wake him or bother him but he always hears me and makes me talk about it! It sounds like you have a great guy!

I too have thought about seeing a therapist.. someone to talk to. I have a degree in psychology and understand the stigma around it, but I believe talking about it WILL help ( I should take my own advice.. haha). Anyway, counselors don't judge you and are there to help you - some can even help to coordinate medical services for you.. and SOME specialize in womens health issues!

I am truly sorry you are in so much pain.. can you go to an urgent care clinic instead of the hospital? Instills didn't work for me either and they put me in so much pain too!

I truly hope this message helps you and feel free to PM me.. I could give you my email address, screen name, facebook.. anything you'd like.

Take care and I hope you feel better soon!


xo Genn

[jenjen05]

cinnamon8, Here's why they won't cover me:

gynecological-
poorly treated by my first gyno for chlamydia that persisted Jan 07-Sep 07
abnormal pap smears sep 07, feb 08, aug 08, april 09.
oct 07- colpo shows mild dysplasia, hpv negative
april 09- colpo shows mild dysplasia, hpv positive
chronic pelvic pain, particularly lower left quadrant jan 07-present
laproscopy october 08- cysts everywhere culture of fluid shows them sterile, they come and go

gastrointestinal-
May 2003- digestive system completely shuts down. the chlamydia had leached into my digestive system and taken over.
August 2003- diagnosed with IBS-C

Musculoskeletal- four major car accidents in three years. two herniated discs in mid back. complete loss of cervical lordosis. the cervical lordosis finally resolved itself late last year. back pain persists.

[jenjen05]

Just thought I'd give an update.

First, I know about not taking other people's rx's. Norco is the same main ingredient and apap (hydrocodone w/tylenol) as the Vicodin I used to take, just a higher dose. Therefore, no problem. If it were a completely new drug, I would have asked. Can't tell the doctor who doesn't want me to have pain meds that I have pain meds. Would get my friend and myself in trouble. Plus I have a mother who is a former RN and a Grandfather who is a general surgeon I asked.

Well, for the main update, I had like one day where I felt okay and now I'm in a full flare again. I don't understand why my flare's seem to last way longer than most peoples. I may not be happy, but you best believe my Daisy May Dog is, she's thrilled about all the snuggle bed time we've been having lately. If I cry she just licks me till I laugh. I love her. <3

Went to my gastro doctor and he was kind of a, well, naughty word, to me. He's never been like that before. :-/ I think he didn't like it when I said I stopped using Miralax. You see, I was taking Miralax everyday and all it did was soften my stool, then finally it stopped even doing that. Now I don't even poo (lol sorry about the graphic-ness) at all. Did a full colon cleanse over a two day period with Fleet's Phosphosoda (sp?) and felt WAY better. Now I'm just trying to eat better and less and drink even more water than I did before.

I'm still really depressed and mad. I don't understand why doctor's don't seem to want to help all of us. It's like because they don't experience the level of pain we do everyday they just don't get it or want to get it. Or maybe they want to get it they just don't have time to. Or maybe they just think what my Gastro doctor said: "You're just gonna have to suck it up, I guess." He said that after I said that if I do the IC Diet I piss off my colon and if I follow the IBS-C diet I piss off my bladder. Yeah, I left his office in tears. Suck it up. Yeah, you get this disease, let me take away your DEA number so you have no access to drugs, and try sucking it up you blankhole.

Ugh.

[glassd18]

Hi Jen,

I hope you feel better soon. The best thing you can do is journal everyday. Write down what you ate, what meds you took, how many times you p'd, and your pain intensity level daily. You said you had one day where you felt okay. What did you do that day? What did you eat? If you start to journal you may see a pattern of the things that help and the things that don't. A positve outlook goes a long way to recovery. I have pain daily and sometimes flares last a long time for me, but I don't get worked up. I just revisit what I did that may have caused me to flare, and put cold packs or heat packs on my pelic area, try to relax, and take a bladder numbing pill or do instills to quiet my bladder. Did you know that meds can make you flare too? I flare from dyes and chemicals in some medications sometimes, and had to search for alternatives. I use an Aciphen (like Tylenol) suppository as it doesn't go through my digestive track that way and causes me less problems in the long run, and it goes straight to my pelvic pain. You really have to figure out what is aggravating your pain. Nerves in the pelvic area are connected, and an IBS or gastric attack can effect IC pain, and visa versa. I can't eat green beans because I flare every time I eat them so now I know to stay away from them if I want to feel okay. Sadly I found out that honey and ice cream tend to flare me too. I also discovered that if I eat something at a different time of day it doesn't effect me as badly as if I eat it near bedtime. Lately I've been wondering if I drink too much water, and make my bladder work overtime especially near bedtime. There are all kinds of things you can do to help yourself. This is a very frustrating disease for both patients and doctors as they all have no known cause and no cure so you have to work with what's available to you. I wish you healthier, happier days ahead. I know you can do it!!!

[LittleRed333]

IC is sure one wacky health condition......what works for one person may not and does not work for another person.....things that you thought wouldn`t flare the bladder, do.....it`s no wonder we don`t all go insane:lmao:.......

But I find you just have to have a good sense of humor about it as well....and I feel my faith has helped sustain me through those dark days when I was first diagnosed.....I have come far since I was first diagnosed, but I will never forget those earlier days because it makes me grateful and thankful for where I am now.....sure I have a bad day here or there, but not like I use......

Hang in there!!....I will be praying for you....

Bless,Sharon

[greendalescott]

Jj I know how you feel. No doubt it stinks to have this malady. Don't any OTCs help at all? I wouldn't hesitate to take what you need for pain control. I used to try to take the minimum amount but now I take what I need. Advil is a pal. Jj I think its your age that is keeping doc from giving you strong stuff. Its bs I know but it has been my experience. Hang in there & take what you need!

[glassd18]

I'd just like to put out there that taking other peoples medications is not okay. My Dad has cancer and is on many different pain meds, and I have felt bad enough to want to grab one, but you can't just do that!! It's dangerous!! You could always ask your doctor to refer you to a pain specialist. I have a friend with IC and endometriosis who sees a pain specialist along with her regular doctor.

[greendalescott]

I never advocated taking other peoples meds. All I am saying is don't live in pain. Take what you need, but do it legally.

[ICNDonna]

I agree that it's never, under any circumstances, okay to take another person's prescription medications of any kind. Anyone whose physician does not feel comfortable ordering pain control medications --- should seek help from a pain management specialist. They are specifically trained in that area.

And many IC patients find that advil will actually cause a flare. I know it does for me.

Donna

[glassd18]

Sorry I didn't mean to offend you. I was refering more to Jen's previous post where she says she knowingly took OP meds. I would hate to see somebody get hurt.

[greendalescott]

No offense taken. Good luck to your dad too.Mine fought that awfui disease tooth & nail. Let him know you're there for him & with some divine intervention, things will work for your family.

[glassd18]

Thank you Green, but my Dad's cancer is incurable, and he is worsening daily. I do pray though that some devine intervention happens. We can always hope. He is 81 1/2. I think the half counts at this stage of life!!! lol

[Zygala87]

Jen I have said it before and will say it again. A normal person takes pain meds to live life to the fullest. An addict take pain meds to escape life and all the stress that go with it. I am in an OK position with my IC today. If I should go into a major flare it is so comforting to have the pills in my purse. Most Doctors only will subscribe a 30 days worth of pain pills. So what the heck is their problem with giving you enough relief to calm your bladder down. Pain is like a snow ball rolling down hill, it just gets worse & worse. Honey you really need a Doctor who will help you and that maybe a pain clinic. I know nothing about pain clinics. Don't give up get going and find some help. You maybe a candidate for Medicaid if you have no income and no health insurance. I am not an expert about that. Only your Social Sercuity office can give you more information I am guessing. Not to be gross but if one is use to a strong stool and all they get is a runny diarrhea kind of movement it just not seems normal to them. It is important to keep things moving within their bowels. Do whatever is necessary to keep things going. You can deal with this problem later when you are not in pain hell. Love your Mother but don't expect her to understand. Most people who do not have IC will never understand. I am very worried about you. Keep posting and let us know how you are coming along. Get over negative things from the pass whatever that is. We have today to start over and need all the good karma we can muster up. Big Hug, Ziggy

[ophelia33]

jenjen05,
I too don't want to live like this anymore. I know the people on here do help and when you feel you're so alone and no one understands get to a computer and post or reach out. I think nearly everyone with IC gets to where you are at some point (I'm there today and its hard to even reach out). IC is no joke. I hope that someday IC gets a cure for it and that I'm able to have the cure as I wish you do too. At times its only hope that keeps me going. I don't have much else. Sometimes my only friend is the Elmiron and I hope that doesn't leave me too.

I had a "real" life at one point too and I don't realize how good I had it. I don't take anything for granted anymore and my eyes are wide open to the suffering in the world. Some people skate through life and never get hit with anything. With all the illnesses in the world, including IC, so many people are suffering from something. Those people who skate through I think are the minority.

I am where you are and I feel your pain so much it brought me to tears. A couple of months ago I wanted to move to Miami. My IC is acting up something crazy and I just started with a new urogyn and I feel I have to live where the urogyn is. IC stinks w/o a doubt.

I wish you all the best. I'll never lecture anyone who is sick--ever!

hugs,
O

I hear well meaning people say "there is always someone out there with it worse than you"...I think that minimizes one's own pain. Your pain is real. I tell people, my illness is real and my pain is real too.

[ophelia33]

I know its not okay to take other people's meds and I'm sure that barring some addiction to them that the people that do so need to. Yes, taking medication not prescribed to you can have disastrous results. I don't want anyone to think that I'm saying its okay. I just want to know why someone in pain and suffering shouldn't get relief. It is so hard to get a dr. to prescribe something for pain.

I had laparoscopic surgery and I saved a couple of vicodin from my surgery for menstrual cramps. My ob/gyn who diagnosed my endo and IC wouldn't give me anything for pain. Nothing! Told me to take ibuprofin. Right...I'm 12 years older then jenjen05, no offense but is it still my age? I have no history of drug abuse. My family dr. gives me 5 darvocet a month for cramps and it helps but doesn't make them go away. Most of my pain is from endo during my period but no dr. will take out my uterus or stop my period and I've tried birth control pills for years. I'm already fixed. I don't want children.

How many drs can one person go to in pain and be denied pain medication? I just wonder how many people would let another person's vicodin sit in front of them for years when in constant pain.

Pain is serious, debilitating and emotionally and physically draining. I'm not here to judge, I might take that vicodin too if I knew I'd get some relief. Enough relief maybe to get me to call another dr. for another opinion to plead my case another time. After a while, there aren't any drs. left.

Getting pain medication isn't easy. I have trouble sleeping at night and no one will give me lunesta even though it works. I know it works b/c I had it inpatient. When discharged, no lunesta. Humans aren't supposed to go on 2-3 hours sleep at night, sometimes 1 hour. If I were a dr. I'd script my own lunesta but unfortunately I don't have that power and have to rely on others who do sleep.

I'm just saying you never know the extent to which someone is suffering until you're in THAT person's shoes. I'm not advacating someone self medicate, but I understand why people do it. I can't judge or lecture. I hope I didn't.

much love to all,
O

[jen74]

I have to say that I agree with O in alot of ways. I do understand that it is not good to use other peoples meds, this could be dangerous, but sometimes if you are in a bind and you have taken a certain med before and know it is safe for you, and your family member says it is ok, and you are suffering to the point of insanity,, then I can understand. Not everyone can afford to run to the ER the way they rob people blind!!

I unfortunately do not handle pain meds of any kind very well, I get alot of nasty side effects even from a small dose. I cant even take asprin, I get severe stomach pains and vomiting from even a baby dose(160mgs). But anyhow, I hope you can get some relief somehow, severe pain is not easy to live with and you have to do what you got to do to feel better. Best wishes.
Jen

[ophelia33]

Jen74,
That stinks you cannot tolerate pain meds. Has your dr. given you any alternatives for aspirin, etc. I know with oxycodone I itch something aweful and sweat up a storm. I was at an inpatient psych hospital when I tried that and my pdoc said he couldn't believe he was giving that to anyone for menstrual cramps. I didn't leave there w/ a script for it but it did knock out the cramps while I was there! The itching and sweating was better than the pain. At least I slept through the itching and sweating. Don't sleep through the cramps, just writhe in pain and cry if I don't have anything to take.

How do you cope?

hugs,
Ophelia

[ICNDonna]

This discussion has developed into rationalizing taking other's medications, which is not okay. If an individual is in pain and has a physician who doesn't feel comfortable ordering pain control medications, it's time to seek the help of a pain management specialist.

I will be closing this thread now and ask that the subject not be reopened.

Donna