LOTS OF CONSTANT PAIN!! (need advice)

[emilyec]

When I first found this web-site, I burst into tears. The reason why I was searching for info in the first place is because I have been in constant pain since the DMSO and diagnosis and wasn't told very much about my disease in the first place. I have been this way since the surgery last mth. It's been very difficult as I am a full-time student and a full-time mom of a 2-yr old baby boy. My quality of life has gone down hill rapidly. I have missed a ton of school this semester because I'm in so much pain and don't feel like even getting out of bed, let alone getting dressed for the day. I'm very angry that I have this disease @ 24 and that I never feel like playing with my son. I have suffered kidney stones, kidney infections, and now this. Luckily, I have a great mother and sister that help me. I got so sick that I had to move back home w/my parents. I'm miserable everyday and everytime I go in to see my Uro, he ignores my complaints, ask me if I'm miserable, and gives me a hug. He even wants to do the same surgery again. Presently I'm on Elimron and Atarax. Still nothing yet. I have visited the emergency room over 5 times the past 2 mths. The last time I got a script of Vicodin ES and it hardely makes a dent in the pain. I live in a small town and seems like no one here (doctor's including the Uro) no very much about what is going on. My doc told me that the precedure I had usually last up to a year. Am I so different that is didn't work on me. The last time that I had the precedure done (dmso and lidocaine) he sent me home w/out any pain meds and I was in horrible pain! I'm miserable, depressed, and need advice! I used to be so afrais of surgery and the anesthia and I cried each time. Now, I almost don't care if I wake up afterward. If I didn't have a child, I don't no if I would care @ all. Any advice?
-Emma

[Teri]

{{{{{Emma********** You really need to find a dr who is going to help you with your pain. Sometimes it take many dr's before we find someone who is willing to help so you case, unfortunately is not that shocking. It's heartbreaking.
It took me 7 years to find a dr who had the guts to give me the things that I need for my pain. Without it, I can not function. With it I don't function well but I am able to now make to grandchildren's birthday parties and family functions that I couldn't make it to before getting the pain meds that I need.
What ever you do, don't give up. There is someone out there who is going to help you. Sometimes we have to do alot of footwork but once we find the right dr, we find it was worth te wait.

sending tons and tons of hugs~

[dyno]

Emma,
I am so sorry for what you are going through right now. I can't spell your town in TX but it is in east TX. If you don't have a good Dr. there I know there are good Dr.s in both the DFW area and Houston. I think we have some gals on here from east TX. Teri is right, if you have a Dr. who doesn't know a lot, you can try to work with him and educate him---if he is willing or you can find a new Dr.

In the meantime try to learn all you can. Here is the link to that Handbook on this site.

http://www.ic-network.com/handbook/

Read all you can. Learn about the treatments, learn about the diet. The diet is a real big part of many IC'ers life. There is a product called Prelief available at many drugstores or you can order it right off the internet, that helps remove acid from the food/drink that you eat. This product helps a lot of people.

Read through the guest lecture series, you will learn a lot from that too.

http://www.ic-network.com/guestlectures/

Come back and ask questions, we will all be here for you. I have been diagnosed with IC for 29 years, I am almost 46 now. You can have a life with IC. Welcome to the ICN.:hi:

[ICNDonna]

First of all, I'd like to welcome you to the IC Network. I'm sorry you're having such a difficult time.

Are you following an IC diet? That can be extremely important to help control your symptoms. You'll find diet information in the Patient Handbook at http://www.ic-network.com./handbook/ You'll also find information about treatment options in the handbook.

I do suggest that you ask your doctor directly for some pain control medications to help you.

Sending warm healing thoughts,
Donna

[Kimberly31]

I am so sorry you are going through this nightmare. But I can say you have found the best support group there is here on ICN. The women & men on here have been so very supportive and can give you so much advice no matter what you have gone through there is a good chance that you are not alone in any situation we have all been through a tough time with this disease.
As far as the advice I can give you if first and for most DONT GIVE UP! There is help out there just takes time and patience to find the right dr. that can and will help you.
I went through DMSO also and it was a terrible experience for me and since I had those instillations I have had nothing but back to back infections. Not sure if that was the cause or not though.
I know of some people that have had really great experiences with DMSO it just really depends on the case that is being treated.
I really and truly hope that you can find some good help and I have faith that you will just keep on going and dont stop until you find the dr. that you need even though you sometimes feel that you are hitting nothing but brick walls we all totally understand that.
I hope that things get better for you.
Please keep in touch and let us know how you are doing
*hugs* to you
Kim

[emilyec]

Thank you all so much. Your words give me hope. One of the things I first recieved from my doctor's office was the pamplets on the IC diet and I have been following this all the way. This adds to my frustration as I'm still experiencing the same pain as before. My mother and father suggested making a trip to Houston because it is closer thab Dallas and finding a new doc up there. They are willing to take me monthly because they are tired of seeing me so down and in pain. I don't know where to even begin to find a pain doctor. A nurse told me once that, that was a good option for me as they would be a lot more willing to listen and respond to my complaints. It feels as if all the doctors here are uneducated on my condition. It's hard going to my Uro because all he does is write in my file the entire time and says an occasional "uhuh" and acts as if I just told him I was doing great. I don't want to have to seem to beg for medications, (he makes me feel so helpless as if there is nothing he can do for me. I would love to talk to others in my area and learn of any good doctors and their experiences w/them. I have tried prelief and have noticed a little difference , but no much. Yes, Nacogdoches is in East Texas. It is actually where the shuttle Columbia exploded over and there were pieces found here for mths. Pretty terrible. I refer to this because it was what put us on the map (unfortunetly). I appreciate all of your support and incouragement. The best thing I've done for myself so far is finding you guys!:angel: I would like to get in touch with a new doc before spring break is up, but I'm not sure if thats possible. Pain has become apart of my daily life and its been so hard, but it's not something I can give into. I guess if that was possible, we wouldn't all be here. Thanks again :blink: -Emma

[dyno]

Here is a link that will give you some possible Dr.'s in the Houston area.

http://www.ic-network.com/md/doctorlistings.html

Here is another link from our message boards, I hope this will work. This one is to a gal who know about the Houston support group. She also includes an email address. She could maybe be a big help in finding another Dr. For some reason I was thinking that the other gal on that thread, Liz2, was also from some area over there in east TX.


http://www.ic-network.com/forum/showthread.php?s=&threadid=3085.

If I can think of anything else, I will let you know.
Hope this helps.
:)

[SharonA]

Emma:kissing: ...Welcome to ICN.

Please do not give up. When I was first dx'd, that is what I wanted to do, also. It was such a hard thing to deal with. So much pain. Now, I live a somewhat normal life because of finding treatments that work for me. There are even days that I actually forget that I have IC. That took time and effort on my part but, it was so worth the trouble.

There was a dear lady who used to be on these boards who always said, "Hang in there. There is hope." I believe that and repeat it to you. :kissing:

[Julie Smith]

Dear Emma,

My heart goes out to you. You are among the greatest, caring people who will talk to you any time of day or night and you'll never be alone.

Let me tell you, after my procedure, I was a million times worse so I know what you're talking about.(that pain lasted about 5 wks.)on top of the pain you've got to hassle with the dr. I just kept calling my dr., even after hrs., even when he was at a hockey game. He just wasn't listening or hearing me when I told he meds he gave me don't help and I was in horriffic pain. So, all I could do was keep calling.

I did locate an IC patient advocate who provided me with names of dr.s in my area and assured me I didn't need to suffer like I was. Luckily, I was able to get in with one of those dr.s and he's helped me a lot and does believe in prescribing narcotics.


Heating pad helps a lot. Please do keep us posted, we care, julie
:angel:

[Iris]

Hi Emma, my heart goes out to you, I think we all know the feeling of going from doctor to doctor, and feeling helpless. I would try and find another uro, I know it must be hard on your parents seeing you suffer daily, they sound like they are really there for you , which is great. I know I went from several to one that really helped me out, and like one of the gals already posted, it can make a huge difference, and now I can lead a fairly normal life with the right meds, and some self care. Hope that you can find a doc who will be able to help you with your pain, and really understand how you are feeling. Hang in there, we do all understand the feelings you are going through. Keep us posted and big hugs Iris.:hi: :grouphug: :grouphug:

[emilyec]

Thank you all so much!! It helps to know there are other people out there just like me. I'm hoping to find a doctor in the Houston area soon. Today my son has tons of energy and I feel as if I will be back in the er tonight. The Vicodin ES isn't working and I'll probably wait until I can't stand it anymore-I really hate having to go to the ER all the time. :( Well, I will check back a little later when I'm feeling better. Thank you all again for being so supportive!:angel:
-Emma

[Kimberly31]

PLEASE PLEASE if you do anything make sure that you keep us up to date on your condition and how you are feeling we all care very much.
Take care and hope you get become pain free soon :-)
Kim

[Mimi-in-Chicagoland]

I'm sure you can find a good doctor in Houston. I know its frustrating not to get the pain relief that you need right away. Hugs don't help a whole lot. I know where Nacogdoches is--my dad did an aircraft auction at the airport there last year. I know Houston is a drive, but its worth going a ways to get quality care. You will feel so much better once everything is under control.

The worst flare item for me is sugarless gum.:eek:

[skershner3]

Emma,
First welcome to the group. You will find not only good information here about IC but also people who are going through or have gone through the same thing that you have. They understand and that in itself is a relief. I have a tendency to get a little "wordy" so I apologize in advance. I was diagnosed with IC in 1994 after first going to two different gynacologist's and having exploratory surgery and then to the urologist but even at that I am lucky. I live in WV in a very rural area and how in this little section of the world I was able to find such wonderful doctors is beyond me but I did. My urologist diagnosed me with IC before he did any hydrodistention (because at the time I was in so much pain I didnt want to be touched, bothered, "leave me alone,"). He went by my symptoms and at the time he didnt know that much about IC himself as far as treatment but we learned together. He sent me home with several meds to try, I started them and was calling him every day crying, laying in bed rolled up in a ball asking him how long it would be before anything helped? Finally with adding this and taking away that I found a good combination of medications. I did research myself. I got on the computer and checked to see what medications were being used, procedures, etc. Several years later I had the hydrodistention done and had mast cells, pin point hemmorages and trigonitis. I found that Atarax an antihistamine would block mast cells so we tried that and it worked. Imipramine is a tricyclic antidepressant that urologist's give to children for bed wetting, this is one of the first meds that my urologist sent me home with and I still take it and consider the two I mentioned to be the most beneficial of all for me. It is all trial and error. What works for one person may or may not work for another but there are alot of medications out there that will work and will help to relieve your symptoms. I found that when I had a bad burning flare that an ice pack helped and when I had bad spasms that a heating pad worked. A warm bath does wonders. When my IC gets bad I just have to get off of my feet and I know that must be hard with a 2 year old. It took me alot of suffering before I asked for narcotic pain meds and I wish that I would have asked for them in the beginning because with the right combination of med, etc. you can get your life back. As the others have said your main objective now is to get a caring and knowledgable doctor. Relief will come. I would say that there are very few of us that didnt go through what your are going through physically with their IC in the beginning. It will get better - much better. Please let us know how you are doing. Susan :angel:

[Amber O.]

I had Drs who would not help me & I had to go out of state to try to find an answer. I was told I had possible IC. I went into remission for a couple of years & it came back last April along w/ my Endometriosis. I know how you feel. I am going to a Pain Clinic for my pain meds & I see a Uro who is helping me. My OB/GYN is the best! He made the Uro listen, he would have anyway. But, 3 years ago I saw a supposed great Uro in his same office & she did not do any testying & told me that I did not hae IC. I was taking Elmiron @ the time @ she told me to stop there was no point. I wonder if I would've kept taking it would my life be this miserable today? I, also, have a son. H is 9. It is very hard. Most days I can't get out of bed, either. I take a time released Moraphine & Norco & I am still in pain. My Endo. is back full force I am having my 6th laperoscopy very soon to remove it. My journey w/ all of this began @ age 19 when my son was 2 1/2. I recently had to quit my job, a good job, b/c of the pain. I had my first Cysto in Dec & I got alil bit of ease w/ the frequency for 2 days. Cystos do not help everybody. I ahve been on Elmiron for a while I was supposed to have my first DMSO last Fri but Medicaid won't cover one of the meds so we are working on that.
My original plan was to get a nerve stimulator implanted, different from Interstim, but things weren't going smoothly & I ahd a bad feeling so I am gonna hold off on that for a while. There are a lot of different options out there. I reccomend that you go to a new Dr & if they don't help go to another. If you have to leave state there are programs to help w/ your tickets. I am not trying to blah blah bore you, sorry. I just wanted you to know taht you are not alone in this world. I belong to another really great support group, too. You can email me privately, if you'd like. ambiss27@yahoo.com
I will pray for you & I wish you luck.
((((((((((((((((hugs)))))))))))))))) :grouphug:
Luv,
Amber

[Katrina]

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

alternating cold and heat is good for pain and inflammation and should help a little. I do every little thing I can. I also use topical analygesics and aroma therapy. Sometimes I turn to visualization and reflexology.

When you are at the doctor it may help to have some knowledge of pain meds and what is strong and often used for IC.....so that you know if your doc is giving something you something that has a chance of helping you. You find that info from posts and research.

Let me know if you would like some details on anything I mentioned above.


God Bless, I hope you get the help you need.