just had mine done thursday

[dverba]

:toilet:
I had my cysto thursaday morning. The proceedure was just like donna said it would be, not to bad. They put me to sleep and I did well. Only problem, while iam in recovery my doctor tells my husband he is not going to give me narcodics. so here I am haveing to much difficulty with the pain.

The results showed I in fact do have IC,,not guessing any more. I see this dr on the 6 and my new specialist on the 7th. I may have to order ultram on-line untill I can get to that las appt. It is Christma and I can not affordt to order pain pills on line when I can get them from my doctor and the insurance pay all most all of it. BUt if I do not have something for this pain I will not be able to pull the holidays off like I normaly do. I have to be the one who takes care of the family.We went xmas tree looking tonite and I could not stand up long enought to make it very much fun. We looked at one and i said I have to go ly down we have to get this and go.

I am not looking for answere to nite form anyone, I just want to know I am not alone when it comes to feeling like you are letting your family down. My husband pointed out a picture up on the refrig. today of me and he said, my wife doesn't smile like that any more. He did not say it to up set me but was a kick in the gut all the same. Will I ever be that same smiling women, I do not know. I know I will be a stronger women.

I know none of you know me. But I hope you truley understand that you are my only connection to sanity and self preservation. I thank God you this group everynite. You are all in my paryers. Plaease keep me and mine in yours

[ICNDonna]

Hopefully if you relax for a few days, you won't need pain meds. Please do not order them from illegal sales sites --- it's just not safe! If you don't feel better very soon, I suggest you see your primary care doctor and ask for help. Or call your uro and ask if you can have some ultram --- most doctors are willing to prescribe it.

Donna

[Sally939]

I would call the uro office and then go see my FP as soon as possible. You will be that smiling woman again in time. IC does not go away but now that you have it you can treat it. Most IC patients do find treatments that help them. For me the first few months after getting DXed were the most painfull. I was very sick and not a happy person. Now, most days I am the same old me. I do not feel perfect and once a day I usually have to take a bacfoin for the urgency, but I am moving in the right direction. Now that you are dxed you to are moving in that direction.

[GriffsMommy]

I am so sorry you have IC and so sorry your dr was not willing to give you anything for pain. I would call your uro or maybe even have your husband call your uro and tell him how much pain you are in and it is not right to let you suffer like this. From what I understand a lot of uro's do not like to prescribe pain meds, including the one who did my hydro/cysto BUT he did give them to me for recovering from my hydro. After that I had to go to my PCP and have him handle my pain management as my uro was only giving me 20 pain pills at a time and that was just not cutting it anymore.

I will agree with you, there are times I feel like I am letting my family down. We are broke as can be due to all the work I've been missing and I'm the primary breadwinner. I tell my husband all the time it's all my fault that we're broke and having problems paying the bills. He tells me it's not my fault because I'm sick and I can't help it. He also has helped out so much with cooking dinner most nights as he knows I'm so exhausted by the time I get home from working all day.

I get told by a lot of people here I am amazing because I am still working full time though I am missing more and more time from all my appointments and flares, I take care of my 4 kids and my house. The truth is I'm not as good at any of these things as I used to be because I just can't do it all. Luckily 3 out of the 4 kids are teenagers so they do most of the house cleaning at this point and hubby helps out alot. Somedays I feel like I can't do it but I manage. You also have to remember this is not the end. Now that you know what is wrong with you, you can work on finding the right treatment plan for you. Alot of people with IC can still lead wonderful lives and be happy. Hang in there and don't try to do the holidays all by yourself. :grouphug:

[elamar]

I know how hard this is for you - I still have a hard time not beating myself up over this. I used to be that "super mom" type. I'm not fully better but so much more improved than last year. This IC has turned me into such a pessimest. I have recently tried to look at things differently. Just watch the nightly news, or read the paper and see how others just lost their homes in a wild fire, or their children died in an accident. I feel lucky that I have a roof over my head, a usually supportive husband, and three great kids. Is my house spotless? no. Do I make fancy dinners? no. I just try to do the best I can and do what I am able to do. The world isn't going to end if the xmas lights aren't decorating the front yard! You can order presents on-line. Pick up some pre-made foods to feed the family. Just try not to stress. We have virtually no family ties - sooooo much dysfunction from both sides of our family that we cut most of them out our our lives, including parents! I get sad around the holidays because everyone seems to assume that we have lots of family when we are truly by ourselves. But then, we don't have all the pressure that I hear many of our friends complaining about! No fights, no getting into debt buying tons of presents, no having to clean the house! Anyhow, I certainly don't mean to kick you when your down - I know, I've been there! Just keep your chin up and really worry more about getting yourself better, that is the best gift you can give your family.

[leelee88]

I know all this is very discouraging. But in time hopefully things will get better. I know right after my Dxs was the worse time for me and my family.
I felt so helpless and so alone. But please try to stay positive because with most people with IC things do get better.

I know I have been feeling better these past few months and I was Dx with a severe case of IC. So there is hope for all of us.

And yes it's hard around the holidays, but just remember you can only do so much, I am sure your family understands and loves you no matter what.
Well just remember we are all here for you..(((hugs))))

[Dixiefireball]

I also had my hydro/cysto Thursday morning. I'm so very deeply sorry you are suffering so. However Donna is right these site are illegal for one. Two when you order from these sites you also not sure what your getting in return!

this is what I would do.
1. I would call the Dr. who did the surgery or have your husband to call better yet and tell this Dr you are suffering you need something for the pain. Ask would he please write out a weeks worth of the medicine you normal take.

2. if that don't work I would call your family Dr. let them know you had an out patient surgery Nov 29th and your in pain ask would they please help you.

3. go to the ER for pain control.

You shouldn't be made to suffer. You are a pain patient and you do have legal rights!! You should not be made to suffer!

here is a copy of the pain patient bill of rights:

You have the right to:

— Have your pain prevented or controlled adequately.

— Have your pain and pain-medication history taken.

— Have your pain questions answered freely.

— Develop a pain plan with your doctor.

— Know what medication, treatment or anesthesia will be given.

— Know the risks, benefits and side effects of treatment.

— Know what alternative pain treatments may be available.

— Sign a statement of informed consent before any treatment.

— Be believed when you say you have pain.

— Have your pain assessed on an individual basis.

— Have your pain assessed using the 0 = no pain, 10 = worst pain scale.

— Ask for changes in treatments if your pain persists.

— Receive compassionate and sympathetic care.

— Receive pain medication on a timely basis.

— Refuse treatment without prejudice from your doctor.

— Seek a second opinion or request a pain-care specialist.

— Be given your records on request.

— Include your family in decision-making.

— Remind those who care for you that your pain management is part of your diagnostic, medical or surgical care.

I hope this helps you!

Best wishes!
Rhonda

[formom]

I always look at pictures of "remember when" , but we just have to learn a new way of living now and we all will do it--I hate it too but just keep positive --your not alone! Good luck and big huggs

[ihurttoo]

I agree with the others that getting them off the internet just isnt a good idea. I know you are hurting! But, they are right! You have NO IDEA what you are getting when you get something of the internet, (and besides that, it's illegal!)

Besides all that, you are a LEGIT pain patient! I mean you have a LEGIT pain condition, PLUS you just had surgery! You ought to be able to get pain meds legally! And it infuriates me that your jerk of a Dr/surgeon did not give yu pain meds!!!! :cussing:

But, that being said, he didnt, so now we are left to clean uo the mess! So, let's get to it, and get you some pain meds....legally!

Here is a link to the exact conversation I had with my Doctor when I needed pain meds. Many ICers have used this conversation verbatim, and also gotten pain meds. (They have pmed me and told me.) Maybe it will work for you too! Try it with your Uro/Surgeon. If that doesnt work, try it with your GP. If THAT doesnt work, get a NEW Uro, go to that Dr. once a week for a month or two and then have that conversation with him! Keep doing this until SOMEONE helps you! Meanwhile, go to the ER and get pain control if the URO or GP wont help you when you try this. Here's the link:

http://www.ic-network.com/forum/showthread.php?p=228935#post228935

Hopefully this link will work! (***crossing fingers****:pray:)

Please keep us posted on what happens with you! I know we are ALL very concerned and worried! This SHOULD NOT happen! NOT EVER!

Hugs,
Amy