Why won't my Dr. prescribe pain meds?

[PoisonIvy]

I was diagnosed with moderate to severe IC at 18 years old after having pain since I was 11 (when I started my periods). I have 2 bleeding spots in my bladder. I am surprised that anyone can live through such pain.
Now, I am 20 years old and ever since I was 16 if I had a really bad flare I would have to call into work I am in so much pain. I am still working and I am also a full-time student. I went back to my urologist who actually specializes in IC because I have flares 2 to 3 times a day now. I told my doc how much pain I am in and she will not prescribe me pain meds. She has given me muscle relaxers and told me to take stress management classes. Also, I have really bad histamine reactions which are most likely from my IC....when I am anxious, nervous, excited, or stressed I break out in rashes and hives and start itching all over. She told me I am too young to take medication for something like that. If I am too young to take meds for something like that, does that not imply that I am too young to have reactions like that? I told her that it is only going to get worse because I am working on a 4 year degree in Criminal Justice and am going to be a police officer soon. She said that it will not get worse. Even though I believe a police job is #1 for stress.
She has not tried Elavil, any kind of pain meds, or anything to try and help the pain. The muscle relaxer is causing me to only be able to sleep for 4 to 6 hours so she said I could stop taking it but this is the only thing she has given me that's actually helped the pain! What do I do? Is she basically telling me that I am too young to have pain with the already diagnosed moderate to severe IC? I do not understand what is going on! I have read up on her and she helped one lady get disability for IC!!!! Please tell me, is it because I am young? Because I am not crying to her? Because I am able to keep a job even though I am suffering? On a pain scale of 1-10 when I have my flares it is at least an 11. I cannot move, think, or anything! I cannot cry to my doc about it because as a potential police officer I am training to not show emotion. Is it because I am calm when I tell her I am in horrible pain? Please give me your opinions....they would be very much appreciated.

Thanks!

[Mrs. Peel]

I saw a lecture on YouTube where the doctor said he didn't prescribe pain meds because the pain comes back worse when they wear off. He called it "backlash."

I've had a lot of people misunderstand me because I don't fuss much.

Going to cognitive therapy, behavior modification sessions has been extremely important to my general health. I'm sure I would be much sicker without it.

[PoisonIvy]

Hey Mrs. Peel,

Just have to say, I love the Avengers, hehe. I've seen many episodes.
Anyway, I guess I can see how that might happen. The problem is that I have absolutely NOTHING when I flare at work or anywhere! I don't know what to do with myself and I am too stubborn to say anything to anyone and go home. I just sit and suffer. I would not take the pain killers all the time, just when I absolutely have to. And honestly, I do not think the pain could EVER be any worse than it is. What my doc does not understand is that the pain is so unbearable I would rather be dead. I feel that is the only way I would have any peace. And no, I am not going to commit suicide or anything like that.....I just cannot stress enough how bad the pain is. It would feel better for someone to rip my insides out. On top of that, I think I may have fibromyalgia. My mom has it.... I'm only 20 but my body feels as if it is 50. I do not know if it is from dancing for 10 years (tap, jazz, hiphop, ballet especially, etc...) or if I have a problem. I have to pop my hips back into place every day and my whole body feels bruised and I am tired all the time. *sigh*..... and about a billion other pains I won't even bother to name because now I just sound like a complainer. Anyway, please keep the opinions coming!!!

[Goldfinch]

It seems to me that some fresh brains are in order. You should not have to suffer like this. Read up on IC treatments here in the handbook and in various threads and see if you can find some new docs, primary care and/or urologist, or possibly a urogyn if there is one in your area. There are lots of treatments availabe!

You don't describe what type of pain you have, but if you have bad histamine reactions an antihistamine such as Atarax might help you. Have you tried taking antihistamines? They are often a part of IC treatment. If your current doc doesn't want to prescribe it, try an otc med like claritin and see if that helps or benadry.

If you have UTI like symptoms you can also try otc pyridium, sold as AZO or Uristate. That is good for short-term pain management.

Have you altered your diet at all? Read about the IC diet on this site. It can really help a distressed bladder and can be a life saver. It's a low-acid bland diet: no coffee or tea or caffeinated products, no soda or alcohol, no tomato or citrus, no soy and as few additives or preservatives as possible.

I hope you find some relief asap! There is help out there, but sometimes it can take a while to figure out what will work for you. Many of us have worked through numerous docs to find one that's a good fit, so hang in there.

[katie87]

i am in your same situtation, i am 21 and i have not 2 red spots but so many they can't be counted, some are bigger than a half dollar. i would guess 50+ ulcers, it was covered. I have pain everyday, i was calling out of work, now i am unemployed bc the pain was making me miss work. Anyway, i know you think pain meds will be your relief, i thought the same.i thought once she gave me pain meds, id be able to work, drive, lift, walk, have sex................ well they worked at first. I now take percocet from the time i wake up, till i go to bed, and you know what????? the pain is excruiciating and i sill cannot handle it, i still feel like screaming and crying and wish to die and be put out of my misery... i am sorry to say not everyone finds a pain free time, i have been in pain for 5+ years and the past 3 have been such severe pain daily i am losing my mind and know this pain will not stop until i die. sorry its not very upbeat, but i know in my case i thought pain meds would enable me to live a happy life with normal activitites and functioning, it does allow that SOME days.... but there are days I have maxxed out the amount of pain meds i can take and i am still crying, unable to move and wishing it would end.

[PoisonIvy]

Hey guys,

Thanks for the responses. Like you, katie, i have been in pain for over 5 years.... I'm coming up on 10 years of pain, actually. My body is sensitive to everything, especially this. Sometimes i get a burning pain in my lower abdomin like some kind of acid is eating my insides out. I also get that same burning in my lower back and it radiates down my legs, when at its worst. I have an extremely high pain tolerance and can mostly handle the burning. I can also handle the feeling that someone is sitting on my lower abdomin. The other pain that nothing seems to help (my main problem), starts right after i urinate sometimes.... I feel a burning pain as i urinate, which i can stand, but right after that i have this uncomfortable painful pressure, like i have to urinate but i really don't. If i urinate again, it only gets worse. It's the kind of pain where you just want to crawl out of your skin. I have had a bladder infection before, and it's similar, except this is about 50 times more painful. It is so hard to describe the pain though.... maybe someone here knows what i am talking about. I can live with all the other pains, but this one makes me so uncomfortable that it is hard to think or do anything. If it hits at work i can hardly talk, all my muscles tense up and i just don't speak much. I don't ever tell anyone what's going on either, though. I always just ride it out.... But it is really taking a toll on my body, and for a while this was happening 2 and 3 times a day. All i want to do when it happens is go home and curl up in my bed and cry....though this really doesn't do a whole lot of good. I think the crying relaxes me a little though.
My husband is taking me to a pain clinic soon, so we'll see what happens with that. And i have a police interview in 2 days....where i can show no emotion. I guess we'll see what happens with that too....

Thanks for the replies! Oh and i have tried the IC diet. Unfortunately, some of the stuff it says i CAN eat, actually makes my symptoms worse....like fish. And sodas have never bothered me. Tomatoes bothered me until i started taking a lyco-mato supplement every day.... it hurt for about a week, but eventually i started CRAVING tomatoes. I stood over the sink and ate a tomato like an apple! You guys should try it! I haven't had a problem with tomatoes ever since!

[Preacher-Girl]

New doctor time. I can't believe your doctor, I just can't. I hope a pain mgt. clinic will take you seriously. Pain is pain. No matter what age you are. I really believe you are seeing the wrong doctor and as Goldfinch said "fresh brains" are in order. Please look for a doctor who has experience with IC. I would really suggest a good urologist (even if they are not close by to you) and a good primary care doc. They can work together to provide you the relief you need. You know, sometimes even young children get very sick. Doctors still manage their pain. It's shocking these doctors even have a license to practice. Why did these people become doctors in the first place?

I hope this can be quickly brought under control and you can become a police officer. If not right now, then sometime in the very near future.

[VickiB]

She has not tried Elavil, any kind of pain meds, or anything to try and help the pain.

I guess I'm left wondering what then has she tried? Anything?

As Goldfinch said, read up on IC treatments, self-help, etc, so that you know what IC options are out there. Then decide if your current doc is the right one for you. I don't know if you're one of them, but I can't believe the number of times people have posted that their doctor says there's nothing more they can do when they've only scratched the surface of treatments to be tried! That's so sad! Because the pain is very real, can drive one to the point of losing your sanity, and that should not be ignored!

So, yeah, depending on what your doc has tried, or is willing to try, my thoughts go to the "Fresh brains" suggestion with the others.

Tomatoes bothered me until i started taking a lyco-mato supplement every day.... it hurt for about a week, but eventually i started CRAVING tomatoes. I stood over the sink and ate a tomato like an apple! You guys should try it! I haven't had a problem with tomatoes ever since!
I'm not sure I have the guts to try that! I'm going to have to research what lyco-mato is. How I miss tomatoes! I do know for me, diet is a major factor in my pain level and tomatoes/tomato products (especially salsa, Boo hoo!) are especially nasty triggers!

I'm so sorry you're living like this and I hope you find relief soon!

Vicki

[PoisonIvy]

Hey VickiB, the lyco-mato is just tomato extract. I think what happened was that, since i am taking it every night, it keeps tomato in my body and has allowed my body to get used to it. Almost no one eats tomato every day, so then when someone with IC eats tomato, they are sensitive and it cause their IC to flare. Whereas, if you always have a tiny bit in your system, your body won't be as sensitive to it and so it won't be as shocking when you actually eat tomatoes. It's a theory of mine....it makes sense to me. Especially since this actually worked. Like i said though, it will hurt for a week or a little less than a week, then your body will get used to it. You can buy lycopene at walmart if you wanna give it a try...but i've been taking lyc-o-mato from the online Swanson store.

Anyway, my doc, who is supposed to be an IC specialist, has tried muscle relaxers.....and has told me to go to pelvic floor therapy. When i was having trouble sleeping with the muscle relaxers she told me i should go off of them, but she offered NOTHING else. She recommended pelvic floor therapy because she was doing just a regular exam and i was cringing in pain. She was like, "Does that hurt?" I said, "Only when you move". Afterwards i was like, "So that's not supposed to hurt the normal person?" She said, "I was barely touching you, so definitely not". She never offered pain killers, pain blocker, nothing! She just gave me the muscle relaxers and told me to go to therapy. Well, the therapy is 1000 dollars out of pocket on top of co-pays...even though they accept my insurance! I told her i couldn't afford that. So she had another place call me, and i don't know how much that one is yet. But i am going to be more stressed out even if it's free! I have to fit it in between going to work and being a full-time student. On top of that, i really don't feel comfortable with some person sticking foreign objects (or even their finger) into my vagina on a regular basis!!!!! My doc said, "it'll hurt worse in the beginning, but then it will help". But she still never offered any other kind of treatment! Please tell me if any of you have done this physical therapy stuff and if it works. I REALLY do not want to go, i cringe just thinking about it.

So like i said, she's given me muscle relaxers which gave me sleeping problems so she told me i could stop taking them. She tried elmiron a couple of years ago, but it gave me intestinal problems, so i couldn't take it. And now she's trying to send me to stress management classes and physical therapy and has given me absolutely no other options.
She was the one who got me diagnosed, but she was not able to perform the procedure to diagnose me because she was out of town. So a guy in the same practice was the one who did the procedure and he wanted to put me on bladder instillations 3 times a week and gave me hydroxyzine. But i was 18 at the time and did not want to live in the doctors office in between college and teaching dance full time, plus the whole idea scared me. So i did not go back to my urologist until this year (almost 3 years later because the pains is more frequent and unbearable). And i've already told you the only treatments she has recommended. I was like, "well what do i do when i suddenly have a really bad flare?" She says, "Well, if you go to stress management they can help you learn to breath differently and relax yourself....." Does anyone else see this as bull crap?!?!?!

[elamar]

I went through alot of drs. when my IC started out of nowhere. I guess most doctors don't understand the level of pain involved with it, so they don't give out pain meds. Many just won't because they don't want to be sued or investigated by the FDA. I honestly believe many just don't care. I think you need to find a new dr. asap. There are lower level pain meds that can be precribed like tramadol or ultracet that can help reduce pain and are non narcotic. They just still have to be prescribed. I didn't notice in your post if you have been put on Elmiron yet? That is the first thing you should have been given if you have a positive diagnosis for IC. It can take months to work. Have you tried any alternative meds? Things like cystoprotek or freeze dried aloe vera? Do you soak in a tub to try to relax muscles? There are herbal teas that help some. I'm sorry you have to suffer. Have you been allowed to try any antispasmodics like urelle, prosed or utira-c? Those are for burning urgency/frequency issues. I find those are sort of a form of pain relief. I had good luck with 2mg of valium along with 10 mg of atarax at bedtime. I slept great on that. My prescription for valium expired and the doctor will not give anymore. So I've been struggling with sleep again. She doesn't mind giving the utira-c or atarax. I'm sorry you are being made to suffer. All I can really say is keep changing doctors until maybe you find someone to help, or see if you can get a referral to a pain management specialist. Good luck to you.

[Preacher-Girl]

Total bull. I would get a new doctor ASAP. Even a doctor that is just willing to really help you and is not an IC specialist. I am not sure how my Uro's office is with pain. They didn't want to give me anything (like Elmiron etc.) until my hydro/cysto etc. I get valium and Elavil from a Psych nurse specialist. I get Codeine from my family doc for endo pain. I don't get the same med from more than one practitioner which means I am not seen as drug seeking. There really won't be a day when my primary care and my Uro prescribe pain meds unless I have surgery. They are free to talk to one another. One time I called my uro because I wanted Elavil for a flare. I got a snobby doc on the phone and she gave me a bunch of baloney and refused to prescribe it. So I realized I needed to call my psych nurse and she prescribed it right away because I couldn't take the long flare and I was becoming depressed. It's a psych drug so she was comfortable with it.

Specialists are usually only comfortable with a drug that directly effects the condition they are treating. My family doc doesn't prescribe Prosed because that is my Uro's territory and she didn't prescribe birth control for the endo because she wanted my gynecologist to do it. My psych nurse doesn't prescribe atarax because she sees that as not in her field. She will prescribe 2 mgs of valium for anxiety/migraines but will not prescribe a larger dose for my bladder if needed. She then sees that as Uro territory. So, unfortunately, you need to work the system a little because these days all practitioners behave this way.

I would suggest making your own team of doctors if you are able to pull it off with your insurance. It takes time but when the wheels are really in motion you will always be able to get the help you need when you need it. Then you can see those docs but mostly you will probably spend time seeing your general practitioner as they follow your progress.

Hope this wasn't too confusing.

[PoisonIvy]

Hey elamar, I have tried Elmiron.... unfortunately it caused intestinal problems and i was unable to continue taking it. I haven't tried baths because i don't know how to relax lol! If i sit down in a bath i think about all the things i should or could be doing and i end up getting out of the tub, lol.

Wow, Preacher-Girl....I am glad you figured out how to work the system. I can't believe you have to go to all of those doctors! Thanks for the tips!

I did switch doctors... my husband found me a doc. I went to the new one for the first time today.... I went for IC, a hip problem i have, fatigue, and my body feeling bruised all over. He looked at my age (20) and said that i was too young to be having all of these problems. He told me that it must be a result of an unhealthy lifestyle. I said, "I was a dancer for 10 years". So then he says "You need to exercise and stretch". I was like, "I DO exercise and stretch! I was a dance teacher!" So he tells me that he really doesn't want to give me any pain meds because he doesn't want me to get addicted, especially since i am young. I said, "I just need something for when i have the flares, i don't need to take it every single day.... But i need something for when i'm at work and have a flare and i can't even think it hurts so bad". I also recommended Elavil. He said that he would like to try that.... So surprisingly he gave me Elavil AND 5mg of Lortab! I thought he wouldn't give me anything! Then he said, "And if we find out that you have arthritis or something, then we'll really start worrying." So, i had blood taken. We'll see how that goes. Do any of you guys feel tired every day and have aches and feel like your body is bruised all over? Is this normally associated with IC?

I am so glad i have something that may help with the pain now! I finally feel like someone is at least SORT of listening! Thank you guys so much for your help and replies!

[Preacher-Girl]

I am curious what kind of doc you are seeing now. Is he a general practitioner? I am thinking you may want to see a rheumatologist for your all over bruised feeling. Many of us have pain all over but I believe that is due to other problems - not IC. I don't think IC causes this. There are a few things that can cause this in my understanding. I have that bruised feeling more often lately. I have sleep apnea and that will cause it if untreated. Fibro, Lupus, and arthritis can cause it. However, what about a sports medicine doc? Or someone familiar. I know dancers can sometimes really wear down there bodies. To be honest, with wanting to be a police officer, you may want to get to the bottom of it as soon as you can. Over the years I wasted so much time with GP's who simply didn't even think of sending me to check for sleep apnea and they really should have. They didn't think of certain things because I was so young. It pays to be very proactive if you experience pain that interferes with your life. It's best to get the help now since you are young.

I am glad your doc is trying the Elavil and pain meds. It's good to start slowly with Elavil. It may make you tired but it can really work for pain and discomfort. I hope it's your answer!!!

Angela

[PoisonIvy]

He's actually an internal medicine doc. This practice is one of the only practices in our area which will prescribe pain meds. I was surpised when i filled my prescriptions though because i thought he had given me 5mg of Lortab....but it's actually 10mg. I'm really kind of a small person. I'm 5'3'' and look about 135 pounds but i'm actually 152 because of all the muscle from dance lol. Anyway, the 5mg after the surgeries i've had would not quite help the pain but if i took anymore than that i'd get loopy! So i'm surprised that he prescribed me that much! On top of that... i thought he was wanting me to do a low dose of the Elavil, but he told me to start with the 25mg and double it after a week! Isn't that a little much? I don't want to be treated for depression, just the pain. 50mg just seems like a lot! I was thinking around 10mg, ya know?
My mom actually has Fibro....i'm starting to think she handed it down to me. Because i'm so achey, i feel like my legs weigh about 3 times the amount that they do. My husband makes fun of me because my footsteps are REALLY loud, especially when going up stairs. His footsteps are so much lighter than mine...and i didn't realize that until he mentioned it. He's 6'2'' and about 255 pounds. Weird, eh?
But yeah, as a dancer i really killed my body. At the age of 11 i popped my back out of place and danced an entire recital that way with icy hot and aleve that my teacher provided because i'd cry back stage then run on and perform, lol! I would actually hide when i would cry so that no one would know, but one of my classmates found out what was going on and told the teacher lol. I have to pop my hips back in place sometimes twice a day, so i think i've worn down the cartilage in my joints. That's why i'm being referred to a chiropractor. The last time i went to a chiropractor he was more worried about my neck because it curves in the opposite direction than it is supposed to, lol. I really probably should go to a sports doc, he probably would know what's gone wrong. I tore part of my hamstring a couple of years ago and the physical therapist said he'd only seen that kind of injury from hockey players, haha!
I think my body was just born old.

Thanks again, Preacher-Girl! I appreciate the feedback!
Oh and if you could, let me know the recommended dose of Elavil to help with IC. I just think my dose is a little much...and my body is really sensitive to all medicine, especially anti-depressants.

[SharonA]

My doctor started me off with 10mg Elavil and slowly raised the dosage to 50mg and then back down to 25mg, which I have been taking for several years.

[Hannah13]

I was diagnosed with moderate to severe IC at 18 years old after having pain since I was 11 (when I started my periods). I have 2 bleeding spots in my bladder. I am surprised that anyone can live through such pain.
Now, I am 20 years old and ever since I was 16 if I had a really bad flare I would have to call into work I am in so much pain. I am still working and I am also a full-time student. I went back to my urologist who actually specializes in IC because I have flares 2 to 3 times a day now. I told my doc how much pain I am in and she will not prescribe me pain meds. She has given me muscle relaxers and told me to take stress management classes. Also, I have really bad histamine reactions which are most likely from my IC....when I am anxious, nervous, excited, or stressed I break out in rashes and hives and start itching all over. She told me I am too young to take medication for something like that. If I am too young to take meds for something like that, does that not imply that I am too young to have reactions like that? I told her that it is only going to get worse because I am working on a 4 year degree in Criminal Justice and am going to be a police officer soon. She said that it will not get worse. Even though I believe a police job is #1 for stress.
She has not tried Elavil, any kind of pain meds, or anything to try and help the pain. The muscle relaxer is causing me to only be able to sleep for 4 to 6 hours so she said I could stop taking it but this is the only thing she has given me that's actually helped the pain! What do I do? Is she basically telling me that I am too young to have pain with the already diagnosed moderate to severe IC? I do not understand what is going on! I have read up on her and she helped one lady get disability for IC!!!! Please tell me, is it because I am young? Because I am not crying to her? Because I am able to keep a job even though I am suffering? On a pain scale of 1-10 when I have my flares it is at least an 11. I cannot move, think, or anything! I cannot cry to my doc about it because as a potential police officer I am training to not show emotion. Is it because I am calm when I tell her I am in horrible pain? Please give me your opinions....they would be very much appreciated.

Thanks!

I think pain management is extremely important in medicine. I think the fresh brains approach someone else mentioned might be a good way to go. There are doctors who primarily practice pain management. Shop around and god bless.

[PoisonIvy]

Hey, thanks, SharonA. I thought the normal dose was like 10mg, so I was a little surprised when he wanted me to start on 25mg and go up to 50 in a week. I don't want to be treated for depression, just IC.

Thank you too, Hannah, for the tip! It is much appreciated!

[Briza]

PI
I am able to split my Elavil tabs in half. My dr and pharmacist told me it was safe to do so. I would not want to start on 25 mg Elavil as that would have knocked me out...even starting on 10 mg has some sleepy groggy side effects that usually go away with time. I can not give direct medical advice, but if you are concerned about the 25 mg, please call your dr and/or pharmacist to see if it is safe for you to split your tabs in half (should be) or else call dr and ask for a new Rx at lower dose. I started and have remained on 10 mg successfully. When my frequency spikes my dr has approved for me to take up to 30 mg, but on "normal" days, 10 mg is all I need. Helps me most for frequency, nocturia, and sleeping thru the night. It is a very good med for many of us, so please address your concerns about the high starting dose you were rxd...b/c it would be unfortunate for you to have bad experience from too high a starting dose and then be too scared to even try a lower dose!

[Preacher-Girl]

Bri and Sharon are right about that 10mgs of Elavil. I just got back to this and I am sorry I didn't respond sooner. Sometimes, I think this is why specialists are good. Twenty-five mgs of Elavil is a lot to start with and I feel like he should have known this. I am glad he is at least prescribing something. Considering all your dance injuries etc. I still feel you might want to look for a specialist for that all over pain.

How are you feeling?

[PoisonIvy]

Thanks Briza and Preacher-Girl. I have already had problems with fatigue, and now the Elavil is causing me to not be able to sleep. I've only been on it for a few nights, but I am tossing and turning all night long, even though I am extremely tired. I think I am either going to have to break them in half or get a lower dose.... I am so sensitive to medicine anyway.
I haven't taken any of the pain meds yet, I have had flares but they are tolerable.
The doc that I changed to is a Complete Care place... So inside that doc, I was told to see their chiropractor. I found out after YEARS of not know what happened to my back when I was 11. Apparently while dancing (I did a major jump) it fractured 2 places that hold my L5 (lower back) in place, so my L5 slid way forward and out of place. I don't know how the doctors missed that when I was 11. The chiro can't fix it though. I guess if it bothers me too much I will have to have surgery. Also, my neck has no curve in it, it is straight up and down...so there is a bunch of unneeded pressure put on my neck. It is also tilted, as well as my spine. The chiro told me "I hope your husband doesn't get jealous because we are going to be spending a lot of time together" lol. I mainly went for my hips, but they cannot find anything on the Xrays, so I will probably have to have an MRI done.

Anyway, that's my little update...I still don't have the blood test back from them testing me for arthritis.

Thank you so much for all the support and responses you guys have given me! I do not know anyone personally who has IC. No one really understands IC except the people who have it.

Thanks again!

[Zygala87]

PoisonIvy I am deeply sorry for what you are going through. Any Doctor today that would not help you with your pain is just not educated correctly. I may have missed it. Have you been put on Elmiron yet? It helps me but I also know that many people can not take it. With the diet, Elmiron and two Hydros I have gone from a 10 of pain down to a 2 within eight months. I have had IC for 3 years and the second HYDRO was done a few months ago. Just my experience only but I have not found any urologist who was of any help plus they would not offer me help with pain. One did prescribe SINGULAIR which helped me with the histamines and he said it would help my mast cells. It does help I believe. Pain snowballs greatly without relief. My Primary Care Doctor told me to stay ahead of the pain with pain pills before it becomes a 10. While into a bad flare I take them and the flare seems to go away much quicker then when I waited until I couldn't stand it. Maybe I'm wrong but I believe our newest Doctors have been much more educated about IC and also the importance of pain relief. I was my family Doctor's first patient with IC. He never heard of it but used his computer to find out everything he could. He helped me totally. Since dealing with me he has had four more patients with the same problem. There is hope out there for us and I Pray you find a good Doctor who really wants to help you. Keep us posted. We care. Hugs, Ziggy

[leelee88]

You mentioned body aches and pains?? Have you researched Fibromyalgia a lot of people with IC have this also.. It can make you very tired and make your body some days feel like a truck has ran over it. And then some days no symptoms at all..

[PoisonIvy]

Thanks so much, Ziggy. I actually have tried Elmiron, but it caused intestinal problems, so i couldn't continue taking it. That's really neat that you helped your doc to learn more about IC. Not many docs will swallow their pride and actually learn more about the disease. I wish the docs would look on this site and read the comments from all these people who are trying to find pain relief. Also, many people with IC find relief with the hydro distention, but when they did that to diagnose me, i woke up in such horrible pain that they had to give me pain meds 3 times before i could even leave! It burned like fire to pee....i was literally peeing blood for the first few times. I was scared to even go to the bathroom because it felt like i was peeing GLASS. I'm glad this helps other people, but somehow it makes mine 50 times worse.

Thanks, leelee. My mom actually has fibromyalgia, and i am wondering if she may have handed it down to me. Especially when it rains, i feel like i have the flu. Or as you described "feel like i've been hit by a truck". If i even sit in one position too long, it hurts to move out of it. It's so hard for me since i trained in dance for 10 years to have to work twice as hard just to stand up off of the floor sometimes. Sometimes i move like my body is twice it's actual age. I guess i will find out soon if my mom has handed the fibro down to me. I have a lot of the pain points of fibro.

Thanks again Ziggy and leelee! I will keep you guys posted!

[Breezy1218]

I haven't read all the replies in detail, so if I repeat something, I apologize.

My family practice doctor has made the comment to me in the past that I was too young to be on narctotics chronically....this was before I was in pain management (which my GYN referred me to)....she hasn't said anything since. That statement bothers me greatly; if we're not too young to have these chronic conditions, then we're not too young to have pain and therefore not too young to be properly treated for it.

One thing stuck out to me in your original post, and I hope this doesn't sound harsh because I don't at all mean it to be, but I'm just going to be brutally honest.......you said on a scale of 1-10, your pain at it's worst is an 11. Obviously we use the pain scale constantly to assess a patient's pain (I've been an RN for 8 years), that's the gold standard. A "10" is considered the worst pain possible....from working in the medical field (I'm not saying I feel this way, per say, but from what I hear and have known/seen, this is the case), when people say anything that's "more than a 10," it's almost a trigger not to take it as seriously, because it sounds like an exaggeration. Does that make sense? PLEASE don't get me wrong....I absolutely believe you have pain, and I do believe it's terrible. I don't doubt that for a minute, because I've been there; I've dealt with chronic/severe pain for a number of years myself, and I am unique in that way from most of my colleagues. But a "10" on the pain scale is the worst pain you've ever had or could ever imagine having, and there isn't anything higher than that. It's almost like it shuts something off in the person you're telling it to if you say it's higher than that........I don't know if I'm explaining it very well. I've heard it from patients many, many times...."What's your pain, on a scale of 0 to 10, 0 being no pain, 10 being the worst possible pain?" "It's a 20." It just doesn't sound good, KWIM? If it really IS so bad that you don't think it could possibly be any worse, then by all means say it's a 10, and that will be understood....any higher than that, and it sounds like you're trying too hard.

I hope that the meds you have now give you some relief. Doses of Elavil can vary widely (I believe when I tried it, I started on the same dose as you, and was also intended to go up, but it didn't end up helping so we discontinued it). It seems you had an idea of a dose in mind, but remember it's the doc's job to prescribe the dose he feels is appropriate.

I disagree with your theory on, you're training to be a police officer so you're being trained not to show emotion, so therefore you won't cry in front of your doctor about your pain or your situation. One has nothing to do with the other, you're being trained not to show emotion on the JOB. If all of this is an emotional issue for you, and it's stressing you out, it is ok for your doctor to know that and see that. In fact, it helps, as long as you're not being overly dramatic....just be HONEST.

I know you thought the stress management thing sounded like bunk, but to be honest one last time........you do seem stressed out, and it does sound like something that would be beneficial. Stress absolutely can cause and worsen flares, and can increase and compound pain. Don't entirely rule that out, several theraputic approaches tend to the most effective overall.

[anewday]

First of all (hugs).

I'd like to agree w/ Breezy here on a couple of things.

First- the pain scale. My physical therapist says she has patients that will say "10"- sitting on the table swinging their legs. She'll say- really, you need to go to the ER? They'll say "No, but it's still a 10". I HAVE felt at times, mine is higher than a 10 - because when you are in the pian, it's harder to imagine any pain worse. I used to use my difficult childbirth as my reference-that was a 10. Then I broke my leg in 3 places- now that's my 10. If I think back and remember that pain I was in, I get queasy. I try to really sit and think about the pain scale, and be honest and realistic about my number. My PT says I tend to give a number too low, but I try to remember- okay if the scale is 1-10- then people who've just had a car accident that cut of their leg are at the max- a 10, then is my pain really that bad?

Second- the police officer/ emotion thing. I am in the middle of a divorce from a cop. I have several as friends, I was a dispatcher. Yes, it is ideal not to show emotion on a scene. However, it is detrimental to you if you show no emotion off duty. My ex is like that- and he is a miserable person. It ruins familys, relationships, and yourself eventually. Police officers HAVE emotions. That is why the set up PTSD debriefings after critical incidents, and have an Employee Assistance Program for free therapy. Stress management is critical to being an officer, especially if you have a disease that is triggered by sterss.

I have known very tough police officers that have been on the job for YEARS and have cried on scene at a particualarly difficult scene. Police officers have emotions, and ignoring them just puts them off until something bad happens. My ex would ignore his then yell at me or the kids over something stupid that had nothing to do w/ his job and was not a big deal. Instead of talking about being upset at another officer dying in the line of duty and talking about it or crying or whatever, he threw a plate ful of mashed potatoes because I spent $25 more shopping for toddler clothes then he thought I should have. Please learn how to differentiate between controlling your emotions/stress and ignoring them.

[L. Thomas]

There are several studies that seem to indicate that IC is not responsive to pain meds. and some of the prescription pain meds actually increase symptoms of IC.

I do think that if you do not have relief with standard treatments that someone should be willing to see if your pain is helped with pain meds.

[anewday]

One other thing...

I read your posts about your back issues. You may want to sit down with your doctor and have a tough, heart-to-heart discussion about your intended career choice. I am not trying to upset you- I swear. I would just hate for you to go thru school and try hard to be a police officer and then realize that it may not be the best choice. Duty belts and kevlar vests are very heavy and put a lot of strain on the back. Also, sitting driving in a cruiser for 8 + hours is very hard on a back to- not to mention if you get into a fight, knocked down, etc. Many very physically fit police officers start out young and in PERFECT, or excellent health and end up with bad back/hip problems, even after staying in shape. You also might want to look at your local departments' policies on medication- the meds you are taking (esp narcotics) may not be acceptable for a patrol officer to take. Any narcotic comes with a warning about driving /operating machinery. Many departments don't want to risk having someone on those meds driving emergency traffic. Again I really do wish you the best of luck- but these are things to look into. You would probably have to have a physical, so these will come up.

[Breezy1218]

First of all (hugs).

I'd like to agree w/ Breezy here on a couple of things.

First- the pain scale. My physical therapist says she has patients that will say "10"- sitting on the table swinging their legs. She'll say- really, you need to go to the ER? They'll say "No, but it's still a 10". I HAVE felt at times, mine is higher than a 10 - because when you are in the pian, it's harder to imagine any pain worse. I used to use my difficult childbirth as my reference-that was a 10. Then I broke my leg in 3 places- now that's my 10. If I think back and remember that pain I was in, I get queasy. I try to really sit and think about the pain scale, and be honest and realistic about my number. My PT says I tend to give a number too low, but I try to remember- okay if the scale is 1-10- then people who've just had a car accident that cut of their leg are at the max- a 10, then is my pain really that bad?

Second- the police officer/ emotion thing. I am in the middle of a divorce from a cop. I have several as friends, I was a dispatcher. Yes, it is ideal not to show emotion on a scene. However, it is detrimental to you if you show no emotion off duty. My ex is like that- and he is a miserable person. It ruins familys, relationships, and yourself eventually. Police officers HAVE emotions. That is why the set up PTSD debriefings after critical incidents, and have an Employee Assistance Program for free therapy. Stress management is critical to being an officer, especially if you have a disease that is triggered by sterss.

I have known very tough police officers that have been on the job for YEARS and have cried on scene at a particualarly difficult scene. Police officers have emotions, and ignoring them just puts them off until something bad happens. My ex would ignore his then yell at me or the kids over something stupid that had nothing to do w/ his job and was not a big deal. Instead of talking about being upset at another officer dying in the line of duty and talking about it or crying or whatever, he threw a plate ful of mashed potatoes because I spent $25 more shopping for toddler clothes then he thought I should have. Please learn how to differentiate between controlling your emotions/stress and ignoring them.

Thanks for understanding what I meant, and giving some more insight. :)

As far as the pain scale, on another note, don't use what you think someone else's version of a "10" would be, though, either (with the car accident/someone cut off their leg example). It has to be YOUR worst imaginable pain, and that's OK. The pain scale can really be a tough, abstract concept...I mean, I ask people ALL the time about their pain, but when someone asks ME to rate my pain, I have a hard time doing it! Some people tend to rate too low, based on several things like not wanting to sound like they are complaining, or whatever. Some people will always rate too high, thinking they won't be treated/given meds if they rate lower than an 8, 9, 10, whatever....and that's not true. I'll have someone say their pain is a 7, medicate them, go back in a bit and ask them again......and they'll say it's a 7. I'll then say, "so, the meds didn't help at all, it's the same as it was before?" "No, they helped, it's better"...........then, how is it still a 7? KWIM?

Again, to the OP......if you do say your pain is a 10, which means it's the worst pain you've ever had, or could imagine having (meaning, you don't believe it could possibly be any worse), then it's ok to say that. But, you will also still be treated if it isn't that bad, either (like, if it's an "8."). For me, personally, I have never rated my pain a 10, even after surgery, breaking my leg, whatever, because to me, I figure there is always SOMETHING that can be worse about it. (I'm not saying anyone has to agree with that, and I'm not at all trying to discount anyone that says their pain is a 10, we all view pain and the pain scale differently and that is OK). It's just when you get in to the "more than 10" area that things get murky in the eyes of a healthcare provider....because it's not possible.

The other thing to really think about (I'm not sure if all clinicians ask this question, but we do) is, what level of pain is tolerable to you? Another way we ask that same question is, what number can you handle your pain being before you would want medication for it? That's a very helpful piece of information to have. People have very different opinions about that, too, and that's ok. We use that info when deciding when and how to medicate. Someone may be constantly rating their pain a 5, but to them, up to a 7 is tolerable, so their pain is managed. The next patient's pain may be a 4, but to them, their tolerable level is a 2....so, they want to be treated for that 4. Both are ok.

[anewday]

Thanks for the info from a nurse's view! The pain scale is so subjective. I always worry too, especially since I take a pain med occasionally, that some doctor's think you are seeking drugs.

I have always been told that I have a high pain tolerance- and have been warned by doctor's that I need to do better about communicating my pain level with them.

When I broke my leg, I waited almost 5 hours to go to the E.R., had my ex help me up, hobbled to the back of the house, took a shower and dried my hair, and went to bed. I did take 1 dose of my pani meds, but what little relief it gave wore off quickly. They did not offer me pain meds at the ER- and it was over 2 hours before I was x-rayed- they were focused on finding out why I passed out. I had neuro tests, cardiac tests, a ct scan, etc. Finally after the c.t. scan and having to move from bed to table, I asked for something. They gave me Toradol- no help, and Toradol makes me jerk- which is worse. But I can only imagine if I told them this - they'd def think I was drug seeking. So anyway, had xrays, waited- dr said nothing broken. New set of xrays- oh, well leg bone broken clean thru and ankle broken on both sides- calling ortho dr in for immediate surgery- next thing I know I'm getting a shot of Diluadad (sp?) and feel like I'm floating in some other world, lol. I thought it was comical how I went from getting a shot of Toradol to Diluadad.....but then I wasn't crying or screaming or anything... I think I rated my pain at a 7 or 8....

[Breezy1218]

Thanks for the info from a nurse's view! The pain scale is so subjective. I always worry too, especially since I take a pain med occasionally, that some doctor's think you are seeking drugs.

I have always been told that I have a high pain tolerance- and have been warned by doctor's that I need to do better about communicating my pain level with them.

When I broke my leg, I waited almost 5 hours to go to the E.R., had my ex help me up, hobbled to the back of the house, took a shower and dried my hair, and went to bed. I did take 1 dose of my pani meds, but what little relief it gave wore off quickly. They did not offer me pain meds at the ER- and it was over 2 hours before I was x-rayed- they were focused on finding out why I passed out. I had neuro tests, cardiac tests, a ct scan, etc. Finally after the c.t. scan and having to move from bed to table, I asked for something. They gave me Toradol- no help, and Toradol makes me jerk- which is worse. But I can only imagine if I told them this - they'd def think I was drug seeking. So anyway, had xrays, waited- dr said nothing broken. New set of xrays- oh, well leg bone broken clean thru and ankle broken on both sides- calling ortho dr in for immediate surgery- next thing I know I'm getting a shot of Diluadad (sp?) and feel like I'm floating in some other world, lol. I thought it was comical how I went from getting a shot of Toradol to Diluadad.....but then I wasn't crying or screaming or anything... I think I rated my pain at a 7 or 8....

ER's are notorious for being stingy, sadly I've been in that boat myself...they tend to be very reluctant until they know they are treating something (in their defense, you'd be amazed at the things they DO see...we literally have people that come in to the ER almost DAILY, sometimes TWICE a day, for MONTHS at a time, either with the same complaint ~ like headaches ~ or with a new complaint every time, but seeking pain meds each visit nonetheless). It's still frustrating for the people that truly need it, though. I didn't see in your story that you passed out (other than what I bolded), but if you passed out prior to going to the hospital, I'd say that's definitely the reason they didn't give you any narcotics...they would mask any neuro symptoms, and if you had been having a neurological event (very possible given the fact that you passed out) that part of the assessment is very important. If the meds had made you even just a bit drowsy, that could have been mistaken for worsening neurological status. The fact that you DID wait so long to go in (and HOLY COW, you are stronger than me! :) ) probably made them not actually think a broken leg was possible, KWIM?

It does suck that if you KNOW what pain meds work for you, that it works against you. My sister knows, for example, that IV Morphine doesn't really help her for pain (she had it after her hysterectomy and switched to Dilaudid because the morphine wasn't touching her pain post op). She was in the ER recently for abdominal pain, but wouldn't tell them that Dilaudid works for her and morphine doesn't, because she knows how that "appears." I have often feared being labeled a seeker, having had my pain-causing issues for so many years, and being not believed by so many practitioners. It makes you reluctant to seek treatment, and that's a damn shame. I shouldn't defend ER nurses and docs so much, because I DO believe that a lot of how they treat patients can be wrong (I've been on the end of being treated like an addict when I had real pain when my IC was undiagnosed!!) but CAN understand a bit where they are coming from, like I said earlier. I've seen patients that literally will come to the ER in the morning complaining of a headache, get their fix and leave, and come back in the afternoon saying they fell and "sprained their ankle" and want more. The next morning, they're in a different ER across town, acting like they haven't been seen for the problem yet and weren't prescribed meds the day before (I think they don't realize we can get records from other hospitals in a blink these days :rolleyes:). It goes on and on like this, for days/weeks/months...sometimes years, and there are a lot of them.

Lastly, with "chronic-painers," (me being one of them!), you don't see those outward signs of pain that you often see in "normal" (sorry, NOT the right word but I can't think of another term ATM) patients in acute pain....the guarding, the rapid breathing, grimacing, whatever. Vital signs may often be normal in a chronic-painer who has severe pain, where you'd expect a fast heartrate or an increased blood pressure. The body adapts to pain and doesn't respond any more in those usual ways, which also makes some clinicians think we're lying or over-exaggerating. Luckily there is more and more education for healthcare workers on all of these issues these days, but we have a long way to go. The most I try to do it take the knowledge that I DO have, and share it with my coworkers when appropriate.

PoisonIvy, sorry to hijack a bit and get a little off your original topic/post. Hopefully, though, somewhere in my extensive rambling is some info that'll help you in your journey for relief!

[anewday]

ER's are notorious for being stingy, sadly I've been in that boat myself...they tend to be very reluctant until they know they are treating something (in their defense, you'd be amazed at the things they DO see...we literally have people that come in to the ER almost DAILY, sometimes TWICE a day, for MONTHS at a time, either with the same complaint ~ like headaches ~ or with a new complaint every time, but seeking pain meds each visit nonetheless). It's still frustrating for the people that truly need it, though. I didn't see in your story that you passed out (other than what I bolded), but if you passed out prior to going to the hospital, I'd say that's definitely the reason they didn't give you any narcotics...they would mask any neuro symptoms, and if you had been having a neurological event (very possible given the fact that you passed out) that part of the assessment is very important. If the meds had made you even just a bit drowsy, that could have been mistaken for worsening neurological status. The fact that you DID wait so long to go in (and HOLY COW, you are stronger than me! :) ) probably made them not actually think a broken leg was possible, KWIM?

It does suck that if you KNOW what pain meds work for you, that it works against you. My sister knows, for example, that IV Morphine doesn't really help her for pain (she had it after her hysterectomy and switched to Dilaudid because the morphine wasn't touching her pain post op). She was in the ER recently for abdominal pain, but wouldn't tell them that Dilaudid works for her and morphine doesn't, because she knows how that "appears." I have often feared being labeled a seeker, having had my pain-causing issues for so many years, and being not believed by so many practitioners. It makes you reluctant to seek treatment, and that's a damn shame. I shouldn't defend ER nurses and docs so much, because I DO believe that a lot of how they treat patients can be wrong (I've been on the end of being treated like an addict when I had real pain when my IC was undiagnosed!!) but CAN understand a bit where they are coming from, like I said earlier. I've seen patients that literally will come to the ER in the morning complaining of a headache, get their fix and leave, and come back in the afternoon saying they fell and "sprained their ankle" and want more. The next morning, they're in a different ER across town, acting like they haven't been seen for the problem yet and weren't prescribed meds the day before (I think they don't realize we can get records from other hospitals in a blink these days :rolleyes:). It goes on and on like this, for days/weeks/months...sometimes years, and there are a lot of them.

Lastly, with "chronic-painers," (me being one of them!), you don't see those outward signs of pain that you often see in "normal" (sorry, NOT the right word but I can't think of another term ATM) patients in acute pain....the guarding, the rapid breathing, grimacing, whatever. Vital signs may often be normal in a chronic-painer who has severe pain, where you'd expect a fast heartrate or an increased blood pressure. The body adapts to pain and doesn't respond any more in those usual ways, which also makes some clinicians think we're lying or over-exaggerating. Luckily there is more and more education for healthcare workers on all of these issues these days, but we have a long way to go. The most I try to do it take the knowledge that I DO have, and share it with my coworkers when appropriate.

PoisonIvy, sorry to hijack a bit and get a little off your original topic/post. Hopefully, though, somewhere in my extensive rambling is some info that'll help you in your journey for relief!


Oh, i know EXACTLY what you mean. I worked as a pharmacy technician for 3 years, so I know exactly why they are skeptical...I don't get upset w/ the doctors and nurses, it's the abusers that ruin it for people who truly suffer.

And I think me waiting so long to go in made them think I wasn't in much pain...I just have a high tolerance...I've had health problems/ pain from a young age, and my mom has a high pain tolerance....I have just learned to focus on something other than the pain. Everyone says they would've called an amblulance, lol.

[laurina]

There are laws in place now about patients not having to suffer. I would be looking for new doctors asap! I can not believe these doctors who claim to have gotten into this occupation to help people. If I did not have pain meds relief I would not be able to go on. I spent several months trying to find out what was wrong with me when my super hero doctor got to the bottom of it. At the end of 3 months I thought I could die from the pain. I can not imagine how you feel, at this point I would pray for you and hope you start looking for another doctor. These are the kind of doctors I wish we could give IC or some other deblitating painful disease and see how they manage. "IN YOUR SHOES" theory. UGHHHH! Makes me so angry.

Big Hug!

[PoisonIvy]

I haven't read all the replies in detail, so if I repeat something, I apologize.

My family practice doctor has made the comment to me in the past that I was too young to be on narctotics chronically....this was before I was in pain management (which my GYN referred me to)....she hasn't said anything since. That statement bothers me greatly; if we're not too young to have these chronic conditions, then we're not too young to have pain and therefore not too young to be properly treated for it.

One thing stuck out to me in your original post, and I hope this doesn't sound harsh because I don't at all mean it to be, but I'm just going to be brutally honest.......you said on a scale of 1-10, your pain at it's worst is an 11. Obviously we use the pain scale constantly to assess a patient's pain (I've been an RN for 8 years), that's the gold standard. A "10" is considered the worst pain possible....from working in the medical field (I'm not saying I feel this way, per say, but from what I hear and have known/seen, this is the case), when people say anything that's "more than a 10," it's almost a trigger not to take it as seriously, because it sounds like an exaggeration. Does that make sense? PLEASE don't get me wrong....I absolutely believe you have pain, and I do believe it's terrible. I don't doubt that for a minute, because I've been there; I've dealt with chronic/severe pain for a number of years myself, and I am unique in that way from most of my colleagues. But a "10" on the pain scale is the worst pain you've ever had or could ever imagine having, and there isn't anything higher than that. It's almost like it shuts something off in the person you're telling it to if you say it's higher than that........I don't know if I'm explaining it very well. I've heard it from patients many, many times...."What's your pain, on a scale of 0 to 10, 0 being no pain, 10 being the worst possible pain?" "It's a 20." It just doesn't sound good, KWIM? If it really IS so bad that you don't think it could possibly be any worse, then by all means say it's a 10, and that will be understood....any higher than that, and it sounds like you're trying too hard.

I hope that the meds you have now give you some relief. Doses of Elavil can vary widely (I believe when I tried it, I started on the same dose as you, and was also intended to go up, but it didn't end up helping so we discontinued it). It seems you had an idea of a dose in mind, but remember it's the doc's job to prescribe the dose he feels is appropriate. If you are afraid that the Lortab dose is too high, those can be split in half, and you can start with half of one and see how it works for you. I find it a little odd that you were so desperate for pain meds/relief, but now won't take or try them? That is confusing to me?

I disagree with your theory on, you're training to be a police officer so you're being trained not to show emotion, so therefore you won't cry in front of your doctor about your pain or your situation. One has nothing to do with the other, you're being trained not to show emotion on the JOB. If all of this is an emotional issue for you, and it's stressing you out, it is ok for your doctor to know that and see that. In fact, it helps, as long as you're not being overly dramatic....just be HONEST.

I know you thought the stress management thing sounded like bunk, but to be honest one last time........you do seem stressed out, and it does sound like something that would be beneficial. Stress absolutely can cause and worsen flares, and can increase and compound pain. Don't entirely rule that out, several theraputic approaches tend to the most effective overall.

Well, I am going to be brutally honest, then, since you were so kind as to be. I am offended by your post.... I am not even sure why you bothered. Yes, there is a pain scale and it varies from person to person. I have personally never told the doctor that it is an 11....because I am smart enough to know that doctors would not believe that. The most I have ever told anyone in the medical field was a 9....which was after a surgery. To me, 10 is really horrible pain, but I can still tolerate it. When I tell my friends, or people outside of the medical field, I tell them it is an 11 because that is when the pain is not tolerable any longer.

I did not realize I could be criticized so much in one response. So on to the next matter. Where the heck did I ever say I was not going to take the medicine? Maybe as a medical profession you do not realize, most people know their own bodies better than any doctor ever could. We know our own limitations. I was merely saying that the doses seemed high because I am sensitive to any kind of medication. The 25mg of Elavil actually started causing insomnia....oddly enough. So I am breaking it in half now. I made the mistake of taking a half of the 10mg of a hydro on an empty stomach and started to pass out. It did not take care of the pain, however, so I decided the doc knew what he was doing. So after I ate something way later, I took a 10mg of hydro. I ended up throwing up for 8 hours straight.... I was supposed to go dancing that night and was not about to give that up so after throwing up 5 times I arrived at the dance place, threw up again, danced for a while, then got almost home and threw up some more. Am I stupid for doing this? Yes. My point is, I know my body better than the doctor does... I am sensitive to all medicine. I can also withstand a lot of pain and torture, though, so when I say that I can not tolerate something....it is something that someone else would have gone to the ER for.

On to the Police Officer thing.... I do not cry in front of anyone except family and friends. I refuse to show weakness to anyone I do not know. I could not walk in to some doctor and pour my heart out to them. I do not know how anyone could do that with a complete stranger. I am not a weak person...never have been, never will be. As for people thinking that because I have IC and back problems, I should not go on the path to being a police officer.... I do not give up. Even if it kills me....that is where I will be. That is where I am supposed to be. The particular job I want to do actually involves much sitting... Whether in a police department or in the FBI, CIA, etc, I am going into law enforcement to catch pedophiles online. Some of it will hopefully involve undercover work as well.

People in the medical profession, you understand bodies and how bodies work....it is time to look into people and how they think and work. People differ greatly from one person to the next. There have been some friendly people in the medical profession who seem to genuinely care....but more often than not....they are cold and distant and look at people as if they were a machine. They just need to fix them. They would fix them better if they would listen to their patients.... One person my explain something differently than another, it doesn't mean it is wrong...and it sure as heck does not mean you need to criticize how they explain the pain they are in.

So that is my criticism for one person in particular...the one I quoted. Thanks for the "help".

[Zygala87]

I don't believe an offence was meant but I realize why it was taken. Another perfect reason to search for a Primary Care Doctor that gets to know us well. It appears that is not as easy as I thought. The 1 - 10 scale is obviously very important to medical persons. Yet if all hell were to happen to me personally and I called my Doctor and said "I'm in a 15 of pain he knows me well enough to understand I need HELP ASAP! Having a police officer who can control their emotions well is a GOD-send. The last thing I needed was an emotional Officer when I turned in a person for leaving a baby in a hot car and the Mother was ready to attack me for calling the police. He was able to calm her down and explained to her the danger that was imminent for the life of her child. When I broke my ankle and ended up in the ER the only word I could muster up was "Morphine"! The Nurse & Doctor understood and gave me exactly that. It was a pain I shall never forget and I am very grateful for their kindness & understanding. I do understand the importace of 1-10 of pain. Yet as a lay person I might exaggerate with a higher number because I want them to understand it is more terrible then normal. An ER does have much to tolerate and do deal with many strange people who might be looking for narcotics. I need to be more understanding of Police officers and Medical persons. Each are educated in their field. I could not do either job but thank GOD they are there when we need them Hug, Ziggy

[anewday]

I never said you should not go into that profession. I just said you may want to sit and think about the choice given what's going on. I really do hope the best for you. I hope you can get a desk job, that would be ideal. I just don't know if you are looking at the reality. Not all officers can go straight into a desk job. I know an officer who has been one for over 20 years, has received officer of the month, and has a master's degree. He is still stuck as a patrol officer, though goodness knows he's tried to be elsewhere. My ex has a desk job, basically- he's in a school. However, he still gets banged up in fights, and has back pain from the belt/vest. I would just absolutely HATE for you to try so hard for something that you may not end up being able to do. It is a very physically draining job.

[L. Thomas]

There is treatment for pain that is not an oral medicine. I use it all the time for hip, shoulder and knee pain and can be used eternally for IC pain. It is very effective for most people. It is used after most joint and ligament surgergies.

It is called a TENS unit (transdermal electrical nerve stimulator). There are 4 electrodes that you place over the areas you are having pain and you set the frequency, strength, length of the shock. It sounds awful but it actually it feels like little tingles and sort of numbs the painful area for a while. I find the results last quite a while.

You do need a prescription for it. The durable supplies portion of your insurance may cover it. If it does not the retail price is $300-$400, well worth the price.

I am allergic to all prescription meds given for pain except morphine and demerol. I really want to avoid these because I am concerned I will develop an allgery to these also.

[ICNDonna]

I totally understand what you are going through with medications. So far we haven't found a pain medication I can take without nausea unless I take an anti-nausea med with it. Elavil did an "opposite" on me --- I was hyperactive and my blood pressure went up to dangerous levels. Elmiron gave me severe headaches.

I totally admire your career goals --- we need more caring, dedicated law enforcement officers.

That said, I'm glad you will be seeing a pain management specialist. I think you might even want to consider getting a second opinion about your care. That doesn't necessarily mean you need to change doctors, and no ethical doctor will object.

Sending warm healing thoughts and encouragement.

Donna

P.S. I have told a physician who asked me about pain level on a one to ten level and I told him it was off the charts --- he believed me! --- I had a frozen shoulder.

[PoisonIvy]

Hey, thanks guys for all your support. I may have gone off a little too much on Breezy, I just felt like instead of supporting me she was critisizing everything I said.

Anewday, thank you for your concern. I have already thought through being in the law enforcement field, however, and I know that is where I am supposed to be. I am prepared for the pain it involves too :-) You know what's weird though....and maybe you guys feel the same at times.... I would rather have some kind of physical injury rather than the IC pain. I would rather be cut, kicked, punched.... To me, those kinds of pain are far less than the IC pain. Lol, I could see myself now, all cut up and bruised, laying in a hospital bed after some kind of incident in law enforcement and going, "Wow, I'm just glad I'm not having an IC flare".

Anyway, I am kind of afraid to take anymore hydros since I threw up for 8 hours last time. That was horrible. Maybe I lost some weight doing that though and I will be ready for bathing suit season, lol Totally just kidding.

Have any of you guys taken yoga classes for stress? I was wondering if that helped any of you guys.

Thanks, Donna, for your response! I'm glad the doc listened to you when you said your pain was off the charts. I guess the Elavil made me somewhat hyper too, because when I started with the 25 I could not sleep at all!

I am still baffled by the many doctors I have been to since I was about 11 who have said "You are too young to be experiencing this kind of pain" and did nothing to help me with it, lol. Since when do you have to be in your 30's or 40's to start experiencing back problems and IC?

Thanks again guys for all your responses!

[ICNDonna]

I have had severe vomiting after a hydro, but they help me so much it was worth it. Three years ago I ended up spending an extra day in the hospital due to vomiting. I learned that I need to tell the anesthesiologist that I have a severe nausea problem with any kind of anesthesia so they will be alerted to that. My last two hydros went very smoothly, I was given meds to control the nausea and was able to come home on schedule.

Donna

[PoisonIvy]

Thanks, Donna. I think I may have to get something for the nausea as well. Lastnight I had a flare and I was so afraid of vomiting all night that I did not take anything for it.

Something I did notice when I finally was given something for my pain was that I started going to the restroom more. Not from the meds. I realized I had been so afraid that I would hurt after urinating that I just hold it ALL the time. Sometimes I will only go one time in about 10 hours. Crazy, right? It hurts to hold it, but it hurts even worse sometimes if I release it. Because right after, I have a flare. Until I found out that I would vomit after the pain meds, I actually started living more of a normal life, not afraid to use the restroom.

I may try them again, but I am going to make sure I have alot of food in my stomach. Hopefully this will help.

Thanks again for the replies!

[Briza]

Hi PI
How are you doing? Were you able to speak to your dr or pharmacist about lowering your dose of Elavil?
Are you speaking of the Lortab you were Rxd when you say you vomited after taking pain meds? If so there may be other low end pain meds you might tolerate better, examples include Ultram, Ultracet, Darvocet, or Tylenol w/ codeine.

Anyway, just wondering how you are doing and hopefully progressing? :)

PS>From one of your posts at the beginning of this thread you mentioned that the dr that actually did your diagnostic procedure (not your reg uro, but the one who did the procedure b/c your reg uro was out of town?) was planning to start you on instills. Did you ever have the instills done? Or see that dr again who did the dx procedure? If not, if he is still around maybe you could look him up or find a different uro that does rescue instills. Rescue instills seem to be really effective for many, and many people learn how to do them at home so that they don't have to live at the dr's office! Not to mention it is much more cost effective to learn how to do them at home rather than in office.

Just an FYI..you said that sodas don't bother you. It IS possible to not feel an immediate effect from an offending food or bev: sometimes a delayed reaction or a cumulative effect occurs...so if sodas (or any other really well-known bladder irritants) are a regular, daily part of your diet, you might not be able to really determine if and when they are bothering you. Just a suggestion ;) try drinking just IC safe bevs such as water, milk, pear juice (but mostly water!!) for a few weeks and see if you have a decrease in symptoms! I say this because sodas are VERY well documented around here for having bad effect on bladder for most with IC. Some here might be able to tolerate some soda occasionally, but like coffee, sodas are at the top of the list for being bladder irritants! I really was not able to tell how much even unsweetened iced tea no lemon was bothering my bladder until I didn't drink it for a month or so just by chance, not planned...then drank several glasses of tea at a restaurant. My frequency went up to 30-40 times a day for a few days!!! It doesn't cause me pain, so that is maybe why I didn't really ever think of it as an irritant to my bladder, but I learned! But I only learned by taking it out of my daily diet for a while...if I hadn't, I probably would not have been so aware of the spike in frequency it caused me after not drinking it for a month. Just something to think about with the sodas in case you drink them often or daily and if so, that might be one thing to consider abstaining from for a while to see how it goes! Anyway, take care, hope you are doing ok in your studies and at work.:)

[bluetart]

Yikes it sounds like you need another doctor. If your not happy with the care find get another opinon, and IC specalist will have much more options than that. I am 21 and a working full time student also. You might be feeling like you have fibro because your body is never getting a break from the constant horrible pain which can wear you down and make you tired and feel sickly and weak. I have been prescribed pain meds. I have a new doctor for quite awhile but have had enough pain meds to never need to ask for a prescription. I hope you get what you need and fast. I also have two or more bleeding spots on my bladder which were later dx as ulcers.

[PoisonIvy]

That's interesting bluetart, did you have the procedure (hydro distention?) and they said that you had 2 or more bleeding spots and then later you had the procedure again and they determined it was ulcers? If so, how much time was there between the 2 procedures? Or how did they determine that?

Hey Briza,
For the past year, I drink at the most 1 soft drink a week. But I mostly drink koolaid. Is that bad? It's basically just sugar water lol. But, whether I drink the soft drinks or I don't, it doesn't seem to make a difference. I'm usually pretty good at determining what bothers my bladder. Like, I don't know if anyone else has this problem, but fish from Long John Silvers, or Captain D's, causes a MAJOR flare. I'm not sure what in the fish causes it, but it's horrible! Of course, you don't get the flare right after you eat it, it's usually a few hours later. I usually only eat once or twice a day so it is relatively easy for me to tell what causes a flare. Lately, though, it has been nightly. Right when I want to go to bed, I use the restroom and the flare starts up! Why does it have to be when I want to go to sleep?

I called the nurse today to ask about the Elavil. She hasn't called back yet. But I took the 25mg for a week and was an insomniac. So for the next week I cut it in half.... but I am having SEVERE depression. Having those stupid thoughts like "my life is not worth living" and I have to FORCE myself to go to work. Not because I hate work, but because I am so depressed. But on top of everything else, I have been somewhat depressed already because I found out a few weeks ago that my husband has been lying to me about something since before we even got married. We have been married for a little over a year. He has lied to me every month for about 14 months. So now I am wondering if it's him that is causing the depression, or the meds, or both of them! I'm stressed out because I am contemplating divorce, even though I really do not believe in divorce. *sigh* Ok...I know this isn't a counseling session. Though I may need one after this lol.

Anyway, any thoughts?

[anewday]

I have not attempted to drink Kool-Aid since diagnosis. I would think it is NOT IC friendly! Here is what I found on wiki answers:

The "unsweetened" form of Kool Aid contains fruit flavoring, citric acid, calcium phosphate, salt and Vitamin C. Some flavors add maltodextrin if natural fruit solids are used.

The "sugar free" mixes add aspartame (Nutrasweet) and acesulfame potassium.

The "sugar sweetened" mix adds sugar, sodium citrate, and the preservative BHA.


Other people who know more about diet can chime in, but I see some things that can be triggers. You might want to start a thread in the "diet" section. If it's sugar free, aspartame kills me. I can't have any artificial sweeteners. Citric acid is not usually IC friendly either. A little bit might be okay for some, but I would think drinking large anounts can possibly be quite bad...

I always hurt worse in the evening and first thing in the morning. I think at bedtime, we have some time to think, and feel what is going on in our bodies, plus we have all the stress of the day that has piled on for hours....it's a hard time for me. Since doing physical therapy, however, it is so much better. I can sit and play in the floor with my kids, instead of just wanting to lay down somewhere.

[purpleviolet]

I haven't read all responses - however sounds like there is Fibro in here - so drugs like Lyrica? Also, some people like inferential wave machines - much stronger than Tens units - so you can research that - one company is Empi that has an if3wave machine for IC but other companies make the similar machines. Also - meditation (hard when you are in pain) and yoga. I like reading this book called "Your hands can heal you" written by a urologist and a pranic healer. Also "Headache in the Pelvis" Even if you don't believe all this stuff it boils down to these methods help us to relax and focus our minds in a certain way that some people find healing... Also I think almost everyone should try elimination diets. One internet one is called the Tuesday Club -it has some guidelines and you can do it yourself - some people have gluten intolerance and yeast and don't know it. I know that this is a hard path because there are so many ideas and there are not easy solutions, but so many people on these boards do come across something that works for them so we have to keep on going. Being young is good. I had IC at 20 and didn't know what it was and there was nothing out there except for doctors who wanted to slice my urethra - what a no-no. You have options. I'm looking into something called GABA-IC. Blessing to you. PV

[PoisonIvy]

Wow, anewday, you may have just saved my life, lol! Last year, before I got married, I drank a lot of soft drinks (which didn't really bother me and I actually had my IC under control!) but then when I got married, my husband started making kool aid all the time. I started having flares 2 or 3 times a day and just figured it was the stress of just getting married. So then, you mention that even the unsweetened packs (which we buy) have citric acid in them. I'm sitting at work and reading this, so I text my husband and say "Check the ingredients on the back of the kool aid packs". My husband knows that citric acid is a major no no for me....major trigger. So about 5 minutes later I get this text "No more kool aid for you". I just never would have thought to check that! I don't know what I was thinking! I guess I just figured since it wasn't soda and it wasn't quite juice, that it had to be ok! Like some other people in the world, I absolutely hate the taste of water! lol. So the next day we go to walmart and start looking at the ingredients on everything.... I learned very quickly that ingredients are very depressing! I'm like, "What the heck am I supposed to drink?!?!?!" I think I am going back to sodas and apple juice lol! Apple juice luckily doesn't bother me.

I might have to look into the things you mentioned, PV. I haven't heard of GABA-IC.

Thanks guys for the responses, once again! Anewday, thanks to you, I may be able to get my IC under control again lol!

[gracie55]

I would find another doctor in your area that specializes in IC. Not all uros will prescribe pain meds, but some will. My doc does, I take vicodin and oxycodone. When I went for a second opinion to please family members the second doctor who specializes in IC said that he does not prescribe pain meds either. My current doctor specializes in IC and she is helping me get on disability. I am 27 and I have severe IC. I have had this since I was sixteen. A really really great book to read is "To Wake In Tears" understanding interstitial cystitis by Catherine M. ******. This is a must read!!!!!!!! You could also try to find a pain clinic near you that will help, I am actually trying to find one myself. Also if you contact the ICA they will send you a list of doctors in your area that specialize in IC. But you should not live in pain!!!!! Find a new doc. Also congrats on the criminal justice, I went to school for the same thing!

Gracie:cat:

[gracie55]

I also wanted to mention that the pain medications are not helping me at all, the vicodin and the oxycodone. They do absolutely nothing but I take them anyway. I am in severe chronic pain also from the time I wake up till the time I go to sleep. I have not found anything at this point to be successful. I tried herbal baths, heating pads, ice packs, pain gels etc... nothing works!!!! Just wanted you to know that even if you get the pains pills they are not always the answer!

Gracie

[PoisonIvy]

Hey Gracie!

That's awesome that you majored in criminal justice! Did you get your degree?

I am so sorry you are in pain all the time. Since I got prescribed pain meds from a Complete Family Care place, the 5mg of oxycodone doesn't help, but the 10mg does.....but it makes me naseated. There has to be some kind of trick to getting rid of certain kinds of IC pain, right? Have you tried the Physical Therapy for the pelvic floor? My doc wanted me to do that, but I really don't want strangers puting their hands in weird places a few times a week. I think it would cause even more stress.

If the pain killers aren't helping the pain, I wouldn't take them if I were you. Although, I have a feeling you take them because if nothing else it eases your mind that you are trying SOMETHING to get rid of the pain. It's the worst feeling in the world to sit around knowing that nothing you do will get rid of the pain you are going through.

My doctor actually helped someone with IC get on disability. Her name is Dr. Doggweiler in Knoxville, Tennessee. She wouldn't prescribe me pain meds, but many others have had great experiences with her. I don't know if that helps or not.

Anyway, good luck and thanks for the response!

~Poison Ivy

[Briza]

I also wanted to mention that the pain medications are not helping me at all, the vicodin and the oxycodone. They do absolutely nothing but I take them anyway. I am in severe chronic pain also from the time I wake up till the time I go to sleep. I have not found anything at this point to be successful. I tried herbal baths, heating pads, ice packs, pain gels etc... nothing works!!!! Just wanted you to know that even if you get the pains pills they are not always the answer!

Gracie

Hi Gracie
I am sorry your pain meds aren't working for you. I had similar experience with vicodin and ms contin(morphine). Neither worked for my pain at all, just made me itchy and b$tchy! Tylenol #3 or#4 (tylenol w/ codeine) is my usual pain med for mild to mod pain and works like a charm. As did Dilaudid when I was suffering from severe pain flares. Anyway, the tylenols with codeine are usually considered not as strong a pain med as vicodin, but that is what works for me! I hope you find what works for you. From my experience, it doesn't necessarily have to be a med that is considered stronger...what matter is if it works!:)
You didn't say if you were following the IC diet or if you have tried doing an elimination diet to determine which foods are triggers for you. Diet is imperative for the majority of us here and many of us find that our meds work much better if we help ourselves by avoiding problematic foods. It can take a while to feel results from the diet, but anything you can do to help an insulted bladder heal is for the best in the long run! Take care!:)

[ophelia33]

Hi PoisonIvy, I agree w/ the others that a new dr. is in order. I have to do what Preacher-Girl does b/c that is the way things work in my area. I need a family dr., a gyno., a urogyno., a physical therapist, a psychotherapist. I also at one point had a gastro-enterologist for acid reflux issues and a psychiatrist for psych med issues. Everyone did something different and everyone seemed to defer to everyone else. At times it is frustrating.

Physical therapy has been recommended to me by others here and by my urogyn. I know you said it was quite costly and it would take up a lot of your time and I do understand that you don't want IC to get in your way of your pursuits and I so admire you for that. I am just wondering if it is maybe something you would just keep in mind maybe for another time and give it a try. I'm giving it a try and the place I have just started with says they could work out a payment plan if I lose my medicare. Just a thought.

Oh, the physical therapist I met with said physical therapy should NEVER put you in pain. She said that defeats the purpose. She starts with the outer pelvis and only agrees to do an internal exam if the outer pelvic region has no pain. It is not a thing where you are tortured and you have to grit your teeth through an internal exam. The dr. that gave you that information is misinformed or doesn't understand physical therapy. I had the exam as part of my first visit and the therapist was quite conscious of pain and went quite slowly and asked me a lot of questions. It was not painful and I had pain when I went that I had trouble concentrating with. I am pain sensitive.

For me, diet is a big deal. I would die if I ate a tomato but everyone is different. I'm so afraid of the pain, I want even try Prelief before tomato sauce on pasta. I just eat it plain its not worth the pain!!

I heard Cystoprotek is really good for IC. I would take it but I'm allergic to shellfish. That's not a prescription med and no fighting the drs needed.

Pain relief is necessary no matter what age.

I hope you find relief soon and best wishes.
Hugs,
Ophelia

[ophelia33]

I too have the opposite with elavil. I asked for it b/c I wanted help w/ frequency at night and to help me sleep and it turned out that after I took it I was so wide awake I couldn't keep my eyes shut. My heart raced and I was like hyper. That was only 10 mg. I tried 5 mg. and that didn't work. I am sensitive to meds too and I try the smallest dose of everything.

I understand what PoisonIvy meant with the pain scale. By saying 11 she's saying "help, I need relief!". That is how I took it.

I struggle with the seeming lack of understanding by some people in the medical profession. Not all but I wonder why some people are working around people when they are so not compassionate. I'm referring to people I've had direct experience w/ in my area. I've had very good experiences at the hospital and some not so good. A lot of times its the hospital I go to.

The times I started crying in the dr's office are some of the times I am not taken seriously. They see I have depression and think I have emotional issues. I try to "keep it together" at the dr. b/c I want to be taken seriously.

I think, PoisonIvy, you should follow your heart with your career. I don't think anyone really meant to hurt your feelings but I can understand how you were hurt by some posts. I at times limit myself b/c of IC and then I feel even more depressed and resentful. I think you are smart enough to figure out what you can and can't do.

A lot of people do care here and are very well-meaning. I get my feelings hurt so easily that sometimes I stay away from posting. You seem very strong-willed and it takes a strong woman to be a police officer and it takes strong women to battle IC.

Thanks everyone for so much input, I enjoyed reading everyone's posts and since I can't sleep again at least I'm not staring at the ceiling in the dark listening to my roommate snore!

hugs everyone,
Ophelia