End of my Rope

[Vicki]

I am so frustrated. I have fought this crappy disease for ten years now. I had a remission last fall after a partial hysterectomy. It was heaven!!! I felt like I was finally living for the first time in years! Now I am back to the same old crap. I have continued to stay off of Elavil because it makes me tired, hungry and anxious. I want to enjoy my family and I can't because I feel so bad. I just want to enjoy life! I have to figure out how to hang on for my family. -Vicki

[traceann]

I wish I had a magic wand to help you to feel better.... :kissing: All I have to offer is lots of :grouphug: and prayers!!!

:grouphug:

[emilyrose197377]

I hope you feel better soon.

:grouphug:

[redmowii]

You might do better if you tell your doctor about how you feel. I am on depression meds, and honestly it makes me have less flairs just because I'm not as upset all the time. Your family loves, and needs you. I'm sure they understand why you feel so bad. Maybe you can try to do some activities with them that wouldn't be hard on your body like board games, or a puzzel. My mom used to read books to the kids like The Hobbit, and The Island of the Blue Dolphins. Those are some of my favorite memories of being a kid. Try to let your family know that you love them even if you are in pain. I hope you get feeling better increadibly soon. My love and prayers are with you!!

[ICNDonna]

If Elavil helped your IC symptoms, I would encourage you to give it another try. It comes in dosage as low as 5 mg, which could still help your pain level without the horrible side effects. Some of us have found that even at low doses, it does make a huge difference.

I've had diagnosed IC for 31 years now and, while I do admit there are times I feel like screaming, most of the time I don't feel horrible.

Warm hugs,
Donna

[Vicki]

Thanks everyone. I don't have the energy to do anything. I am just severely sleepy today because I took an Elavil last night and I took Darvocet and Oxybutin today. Maybe I just need to have my bladder removed. I have tried everything DMSO, heparin instills, Elmiron instills, Interstim trial, Elmiron, flomax, cardura, singulaire, diflucan, cytotec, magnesium oxide, prelief, physical therapy, tens unit, acupuncture, botox in bladder, botox in vaginal walls, hysterectomy,levsin, oxybutin, urised, pyridium, hydrodistension, urethral dilation, the list goes on and on. I am only 36. IC has ruined my life. I would try Cyclosporine A but no one will prescribe it for me. I have the best husband in the world and he does not deserve to deal with all my problems. I had a hysterectomy last fall and I had about an eight week remission. I was off all meds. I felt great. I had so much energy. My husband said I was like a different person. I know he knew I felt bad but he really understood it when he saw me not in pain. My left ovary was stuck to my bladder with endo. My bladder was covered in endo and the doctor removed as mch as he could. I left one ovary and now it has a cyst on it. I may have to have it removed now. Actually, I look forward to that thinking I might get another remission. My doctor put me on Ovcon birth control pills to deal with the cyst. I go in this week for another ultrasound.

[marsi4]

Hello Vicki,

I can understand completely how this disease takes everything from you and prevents you from living. The only life I know is the life of ic. I,ve had this horrid illness all my life for over 33 years as early as I can remember age 6. I know how painful and disabling ic is. I now have chronic pain for 2 years and I'm at my wits end too. I,m considering badder removal but my uro isn't. Even with bladder removal you can still have pelvic pain from what I've read but at least it does eliminate the other symptoms like bladder burning and inflammation, frequency and urgency. You know that there are some complications that can also occur with a cystectomy but I can understand your distress and frustration very well. I'm faced with the same dilemna. All I can say is take one day at a time and on your better days try to do something that you used to enjoy doing before the onset of ic if you can. You seem to have tried everything except for nerve blocks. I'm considering trying them. I pray each day that I could rid myself of this illness but I find myself feeling helpless and very frustrated and upset. Life is unfair but that's just how it is. Some people are less fortunate and are stricken by illness. I try to make sense of it all but it's just the laws of nature. Please don't let this awful disease take away all your hope and life. I battle with it each day as so do many others. Please go to a pain clinic if you haven't already and have some of your pain managed. Pain meds don't do miracles but they do help with pain. I wish I could take your pain away and everybody else's including mine but I can't, but I do understand your struggles and sadness. If I can't take it anymore I will consider the last resort surgery, if everything else fails.

Marsi4