View Full Version : I'm a newbie
10-07-2004, 07:46 PM
Hi! I just want to introduce myself and my unique (from the messages I've read, anyway) situation...
I just found out yesterday that I have IC. I had a cystoscopy a month ago, and returned to the uro-gynecologist surgeon yesterday (he's fantastic). He gave me some information but also provided this website, which is great.
I don't fit neatly into the mould of IC, though. I was quite skeptical at first, since he and I already know I have severe endometriosis. I don't have to go to the bathroom often (maybe 3 or 4 times a day), and it doesn't burn when I do (except for the day of and after the cystoscopy). However, I have constant excruciating pain in my lower abdominals/pelvic area. As of right now, I've been in bed for eight days barely able to move (I'm on my laptop), except for the few hours I spent in emergency (again) and my doctor's visit yesterday. I started Elmiron yesterday, and have been researching trigger foods, etc. WHile that may work in the long run, I want something that will work now. I can't work anymore, and I'm also a student, but haven't been to classes in two weeks. Percoset and Tylenol 3 are jokes with me. They make me nauseated, but don't help the pain at all. The specialist suggested I take Advil 600mg daily to alleviate the inflammation, and eventually that too should help ease the pain. But he also said any narcotic is probably not going to be as effective on my pain as any inflammatory would be.
I'm just getting fed up because I do have bills to pay, and if I'm not working, it's almost impossible to do that. Any suggestions would be appreciated.
10-07-2004, 08:06 PM
Unfortunatly from here on out it might be one stuggle after another, I had to bawl and get real ugly with my Uro today because he is prescribing treatments that are so painful I feel like a grenade blew up in my kidney's and bladder! He has refused to give me pain meds and the pain is so excrutiating I have not beeen out of bed since Monday, now I am up , in pain, not asleep at 2:00 AM and tomorrow will be upon us as we know! UGHHH!!
I wish the diagnosis was not such, so many women are finding hope in other cares with medicines and treatments, ( it really helps to have a good Doc!! Your 1 step ahead of some of us!).
Try to keep holding on even when you have had 8 and more days like this, know that you are a person who matters and you desearve the best care that there is out there
seek it out, study it and see if it is something you can benifit from, definitley get schooled on IC the more you know perhaps the less you will be pushed around!
I hope you feel better as this letter finds its' way back to you !!
Much love, and welcome, the Network is a wonderful place full of info!!
If you do not have Dr. Moldwins book ;The Interstitial Cystitis Survival Guide order it or get it off of here, there is a lot in there that can be of benifit to you!! Best of luck and I hope you feel welcomed and loved despite your pains!
10-07-2004, 11:27 PM
First of All, Welcome to these boards. Everyone here is so great and have lots of advice and wisdom. I'm so sorry that you are in so much pain right now and hopefully your meds will start to work for you.. I have had bad abdominal pain as well but It usually goes away. My main Complaint is burning all the time. It drives me to tears sometimes but at least I am up and about which i know is a blessing compared to some women. You will get lots of great advice here. I'm just learing everything myself because I'm new as well.. Also, glad to see someone from Newfoundland.
10-07-2004, 11:50 PM
Welcome to the boards. I remember the long nights on the laptop as well. Couldn't sleep and in pain. The icebag between my legs and the warm laptop melting the ice. I am sorry you are having a rough time right now. For most of us, it does get better with some form of treatment. It just take time to find the right one for you. Don't give up on finding the right pain meds. You may have to be a "pain" to the uro. My pain did not change significantly until I started on elavil. That helped me sleep longer stretches and fall back to sleep when I did get up for the night runs to the BR. Lack of sleep makes the problems seem bigger and the pain more annoying. Hopefully, you will find your relief soon. You can come here any time, day or night, and vent or find someone's shoulder to cry on. That's why this message board is so great!
10-08-2004, 12:30 AM
Welcome Heather. My dx was the end of May this year and I'm still learning a lot myself. Educating yourself as much as you can. No one fits "neatly into the mould"....each of us are different. At the beginning of my dx, I did not have the burning and frequency either...just the pain, urgency and more pain. Now, I have the frequency too and it feels as if I am peeing razor blades every time I go. I just had a culture run and it was negative so it's not a UTI. Some people find relief almost right away and others have pain 24/7 (unfortunately, I'm the latter). For the most part, I am able to hold my head up and try to be positive even though I am in pain, then I will have what I call a "meltdown" where I cry my eyes out. My hubby says we ladies are lucky that we have the outlet and are able to cry when things become overwhelming for us. It is true that I feel better after a good cry. You sound like a very goal oriented, active, impatient person. That's how I've always been, but I'm learning that I have to learn new ways to live my life with IC and pain. I'm sorry you have this disease and the endometriosis, which can be very painful too. I hope it helps to know that everyone at these boards understand and care about what you are going through.
10-08-2004, 01:51 AM
Hi Heather and :welcome: to the ICN!!
I'm very sorry to hear that you are in so much pain all the time. IC can really suck that way, and I know what you're going through... I went through many months of unrelenting pain along with both frequency and urgency and I had to quit my job (although that was a good thing as the situation there was very toxic and cruel for me so maybe I'd have quit anyway).
I CAN tell you that once you find the right doctor for you, and the right combination of treatments, it DOES get better -- I am feeling better now that I was, but I've tried many different treatments to finally come to the things that are working for me, which is what you may need to do. Have patience with the whole process... I know that can be very hard when you are in pain, but in the end it will be worth it and you will feel better :)
If you haven't done so already, I suggest taking a look in our Patient Handbook at http://www.ic-network.com/handbook. This is filled with information about diagnosis, treatment options, and self-help strategies you can use any time at home. Importantly, it also contains information on the IC Diet -- if you haven't done so already I suggest you try to put yourself on this diet as soon as you can. Many IC patients are very sensitive to foods, especially acidic ones like orange juice, sodas, tomatoes, etc, and benefit greatly from eliminating these and other foods. There's more info in the handbook.
Good luck on your IC journey to find the right treatments for you!!!
10-08-2004, 04:14 AM
I just wanted to thank everyone for the support and information. It is greatly appreciated. :)
I was talking to my physiotherapist this morning, and she was talking to my uro-gyne, and she suggested that next time I see her we may start TENS. There is also a rehab program at the university pool (mostly seniors with arthritis), but they gear a workout in shallow water to your personal abilities. It's sign in by doctor/health professional only, so we're looking into it.
Hope everyone is having a good, pain free day!
10-08-2004, 04:05 PM
That sounds like a great idea. I think you are on the right road and you will soon start feeling better. What ever you do dont give up. I had a therapist tell me once "you have to take 100% accountability for your own health dont let these drs try to figure out what is wrong with you. Figure it out on your own and then you tell them" and I think she was right.
10-09-2004, 10:00 PM
:welcome: Heather to the ICN! Just wanted to let you know if there is anything I can do to help you let me know. I have endo and IC...along with a billion other things.....I like the advise of taking accountability for your own health...it is a huge responsibility but leaving it all up to the docs usually isn't too successful.
:grouphug: glad you joined us!
10-10-2004, 03:39 AM
I don't have much to add, but would also like to say :welcome: to the IC Network.
Pain medications cause nausea for me too --- the solution for me is to take phenergan along with the pain medication. My uro routinely orders the phenergan any time he orders a pain med for me.
Sending warm healing thoughts,
10-10-2004, 04:45 AM
Glad you found us. I also have some Phenergan around for nausea. While mine is not usually connected to the meds, I lose my appetite alot and the Phenergand lets me get something in. It is a bumpy ride, but as things come under control you start to see light at the end of that cold dark tunnel. We are all here, day and night(literally). Send healing wishes your way.
10-10-2004, 10:45 AM
Heather, Welcome to IC. I am newly DX as well and have been reading and asking alot of questions. Finally saw a new Urologist that hopefully will be able to help with the constant abdominal pain and the vagianl burning. I also am unable to work at this time and understand your finacial concerns. Just know that your not alone and many good friends are at this site and are always willing to listen. Hang in there and don't give up. Treatment results is different for all of us. Ask lots of questions about new treatments as well as some of the older ones. I take a note pad with me with questions so I don't forget any. There is a wealth of books available as well. I went to Broders and purchased a couple.
Just stay positive.
10-10-2004, 04:21 PM
I just wanted to thank you all again for being so supportive. I've really been having a hard time lately, mentally and physically. I can't stand long enough to even do dishes, and if I do any housework I really suffer for it later, so my place is a mess. Plus I can't work, or go to school, so I'm home lying down almost constantly. Finding this sight has been great for me! I only hope I can help someone else the way you all did with me!
You will be of help to all of us. Caring is what makes this such a wonderful place to be. I just wish I had come sooner.
I've had IC for almost a year and a half now and I do see improvements. I feel better more often than I did and I know ways to help derail the pain when it hits, at least a lot of the time. Someday, I believe there will be not only better treatments, but causes found that can also be helped through self help, as well as, preventative measures for those susceptible.
What will work right now? Start using either Tums or Prelief with every meal and be sure to choose what you eat carefully. Try hot and cold applied to the painful areas. I made the mistake of thinking hot was the way to go, when I changed to cold, it was amazing relief. I had been taking warm to hot baths, but they only helped while I was sitting in the tub. There were days when I sat in the tub for 6 to 8 hours. Man, that hurts the tush! Then one day, I made myself try a cold bath. From the very first, the relief was immediate. A half hour in a cold tub of water, sitz bath style, and no pain for hours. And, a complete surprise to me, it worked immediately. Now I use an ice bag to sit on, that you can buy in any drugstore, takes longer because I am clothed. But, boy, it saved the poor tush!
Which will work for you is unknowable until you try them. Neither may work, but if you look through all the information and the relevant threads, something will pop up that helps. As an example, I used to be a diet coke addict. Then I read the diet and realized that I should take a closer look. Sure enough, eliminating that one item alone made a huge difference that was clear within a day. Now, I am never tempted to drink it, the pain is too immediate. The connection was crystal clear. And that change helped to immediately reduce the amount and frequency of pain I was experiencing.
I often wish there was a magic wand that I could waive that would stop all of this happening to me. I wish I could give that magic wand to all of us. Someday, this too will be curable, preventable or totally controllable. Someday, it will happen. This is the hope that keeps me going.
Glad you've joined us! Every voice is important.
10-11-2004, 04:14 AM
I just posted my newly diagnosed post today. I too have just been DX with IC and also have endometriosis. I had a lap to remove endo two weeks ago and they did the cystoscopy then. I am yet to return for my post-op appointments but have been researching like crazy so I know what they're talking about and know what to ask when I do. I just wanted to say I understand the overwhelming feeling of being newly diagnosed. I've spent the past two years thinking I've had everything from cancer to IBS to endo (which I do but that's under control for now) and to find out I have something else entirely and now have to spend more time finding the right treatment makes me tired and frustrated. I just want to be pain-free and like I was before. I also want the pain to be gone now, right now. Sigh.
Hope you are finding some relief and take care.
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