View Full Version : Any advice?
10-13-2009, 08:11 PM
I am sitting here trying to gather my thoughts and trying to come up with what I am going to do next or where I am going to go. I say this because I have officially reached the point where the dr. says I really don't have any options left, other than the kind of options that would be radical. I am trying to keep it together and you could say over the past few months my hope has been dwindling because i am finally starting to see "reality." It's sad to know that it took me two long years of fighting this disease to finally understand it, but I guess I didn't want to believe i'd ever get to this point where i feel like I HAVE to accept this as my life. Over the course of two years I have tried so much, the diet, the holistic route in terms of acupuncture & certain vitamins, then physical therapy. Then the instills, then all the medications. I have had 8 surgeries related to my IC. My bladder has gotten worse. I did the interstim recently and that ended up just not working out. It was more like one let down after another. It honestly made me feel like the biggest failure because I couldn't make it work. My frequency remained, then I had issues with it. It wasn't in the right place. It was a huge mess. I invested so much faith in this, that when it just didn't do what it was suppose to, I lost it. I just want to understand why this is happening and what I am suppose to do about this. I go to pretty good dr's but they are not into long term pain management and I honestly respect that because I am young, and I don't want to just bandaid my problem. but that doesn't help the fact that everyday i spend in pain, laying in bed, getting up 8-10 times a night, not sleeping, then the frequency during the day is 25-30 times a day, then the horrible spasms, the constant acid feeling on my bladder walls. It is a constant cycle and I can't seem to break it. I kind of feel like seeing a pain dr. is my only option besides being told to get my bladder taken out. I just can't think about someone taking out my organ. I can't not at my age. Maybe its because there is no for sure that the pain would all disappear. If someone would tell me that it would ALL go away, i'd jump on the idea. But I am done with surgery. I am done being so desperate that I keep having procedures donein hopes of getting better. I hear everyone say you'll never know until you try, but what happens when you try EVERYTHING and nothing works. Where does that leave you? I don't know what I'm doing wrong, all I really want it someone to tell me what to do, but I suppose its not that easy. I guess if someone told me I was dying, I would have somewhat of an answer, i'd know what was going to be my future. But with this disease, you don't know. I often think to myself, if this is my life at 25, what is it going to be like at 30? 40? 50? I am getting really scared. I also siffer from various other conditions so this makes it even harder. I just feel like i'm mentally and physically exhausted from this disease. I feel like I want to give up and just quit trying. I always told myself I wouldn't let this disease break me, everyday I gained strength from others, I even went as far as helping many people, but now I feel like I can't even help myself. I just don't know what to do anymore. When I sit and think about it, I just want to burst into tears, but i've cried far too many over this. I just wish I knew what to do...and how to cope...what to ask my dr...
10-14-2009, 02:46 AM
:grouphug: Have you talked with a counselor? If not, I think that would be a very good idea.
10-14-2009, 05:39 AM
A counselor??? how would they help my IC? I mean I know it can be good to "talk" to someone, but I need a treatment option.
10-14-2009, 06:39 AM
I know exactly where you are. I feel your pain and frustration. I'm in the same boat so to speak as you.
But not as young as you. I have tried absolutely everything you can think of for my IC and basically THE only thing that has brought me somewhat relief is the Gaba-Ic. Supposely you use the one week protocol and it takes your pain away inwhich it took 75% for about 5 weeks this past summer. (It was heaven)But since it is the only thing that has helped. I continue to use it at home.
I have lived with daily pain for the last 5yrs (except for the 5wks) some days harder than others. Today I hurt so bad I just want to reach up there and pull it (my bladder)out myself. The last 2 weeks have been unbarable and I have been basically bed bound.
I guess I cannot write the website here but I will send you a pm so you may want to check it out.
We have a very painful disease and a lot of us here do take pain meds. That is one option for you. Have you seen around allergy season that your symptoms get worse? Mine do. So I up my atarax. If you go on youtube there is a 3 part lecture with Dr. Parson that explains the corralation with mast cells and how the seasons can affect our symptoms. He also has info on his treatment protocol that could be something there you find that you haven't tried yet and you can take the info to you uro and see if he's willing to give it a try for you.
I'll write more later, I need to go lay down with my heating pad right now. It hurts more just to sit here.
Just know you are not alone.
hugs and blessings
10-16-2009, 05:08 AM
you are not alone, i could have written your post. i am 21 yrs old and i have tried dozens and dozens of IC treatments, even surgery. I still have pain every day bladder urethral pelvic migraines muscle and joint pain. I also have endo and adhesions which i am hoping are gone and have not returned ( removed)
what has reduced my Pain :
1. physical therapy. it can be painful and requires dedication to once a week or more to go to the appt and do home excersises, i tried and quit twice, i tried again and this time we are seeing major progress with my PFD, i had severe PFD my muscles were completely isotonic and tightened as tight as tehy could be all day every day, they are now loosening to normal levels at times, this is my number 1 help.!!!!!!!!!!!!! try it and try again if it fails, took me 3 seperate times of sessions to see improvements, been to tons of PT appts.
2. heating pad for bladder and i also sit on it for PFD pain.
3. taking my meds consistantly, not missing a night or two a week, but getting all doses in properly.
4. seeing a conselor, emotional stress causes the pelvic floor to tighten even more making pain worse., i didnt believe this until i saw results from therapy. i highly recommend a counselor or therapist, if you are depressed or anxious or sad it makes pain MUCH worse!!!
5. putting it into perspective. when i am in a ton of pain and getting really negative and down in the dumps i remmeber that at least i can walk and talk, i am not mentally retarded or disfugured or starving, or dying so i can realize while my pain is awful, it could always be worse.
6. reducing emotional pain and stress, i always discounted this as a contribution to pain, always said " my pain isnt mental its real" well , it is real, and stress worsens it. this can really affect pain levels.
i have found no magical pill to help me, no cure and i am still in pain every day but these things make the pain a tiny bit less.
10-29-2009, 07:33 AM
Counselors can sometimes give you a sounding board for your own thoughts to become plans of action. They can also aid in the process and give you ideas you may not have thought about. If you can take an antidepressant, some of them are very Beneficial to treating IC related pain. Sometimes it takes some trial and error to find the right one. If one makes you feel bad, don't be afraid to tell them and try again. I wish I could take them but I am allergic to all of them.
I just wanted to let you know that I am 33 (I was 23 when I was diagnosed with IC) and have been dealing with the IC that has turned my life upside down several times. 10 years later, I still have hope for some pain relief. Sometimes you have to let yourself fall, see a counselor, and you may have to go through more than one to find the right fit for you. Hopefully with the help of the counselor, you will decide what to do next. Some Doctors say there is nothing left to try because they are uneducated on how complex chronic pelvic pain conditions can have on the body. They are not GOD, just specialists in some avenues. There are some Docs that have more options available for you to try. It just may take some time to drop, pick yourself up, dust off and try again.
I've done it all, including the most radical operations over these 10 years and I'm still going. There are days where I want to give up too. I fully understand how that feels. So I hope you can find a good person to talk to to keep up the good fight against this disease.
If you ever want to talk, just PM me. I am here for you as are the other wonderful people on this site!
P.S. What has reduced my pain has been Pain Meds combined with Muscle Relaxers, Nerve Medication, Sleeping Medication, and ICE! I thought I would add my ICE Pack Video in case ICE may help reduce your pain......
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