Guess I am at the end now

[waterflow]

Saw doc today and he said that long list I gave him of "IC tries"....we have already tried or what hasn't could make it worse. So, I guess that's it. I'm tired anyway. I have no clue what to do now. :( I really thought there would be one thing in that big list.

[traceann]

Oh geez, I am so sorry to hear that!!! But don't give up hope - who know's what's around the corner!!! Never give up, ever!!! Sending you BIG hugs!!!!

[ICLori]

Waterflow, what meds/procedures have you tried? I'll bet I could come up with a few you haven't tried yet....

Xolair, for instance is one I'm dying to try. Did you read the one lady's post about that here?

Let me know what you've tried so far, and I can give you a list of things you haven't tried....

Now, I'm not saying that your doc would prescribe these other things, he might not, and you might not want to take them, but...I could at least list a few things for you to keep in the back of your mind...

Blessings,
Lori

[Kara29]

I am with Lori on this one. There are so many meds and procedures out there for IC. What was the list you brought to your doctor? Is it possible to find a new doctor whom is willing to try more things and think "out of the box"? I'd just like to know where this doctor's limits are.

I've had Urologists say that they only prescribe Elavil and Elmiron, Instills, and if they all fail then they do Interstim and that is it. Well that was it for me. But there are some Urologists and other Doctors that are willing to do much, much more to help IC. I had one Urologist who told me anything I could find that may help IC to let him know and he would prescibe it to me. I used to bring him a new medication every few weeks and the list grew VERY large. It may be the case that you need to find a doctor who "wants" to "really" help and is willing to do just about anything to see you get well.

I would be willing to bet that it's not the end and we can all help you find something else to try if not more than that.

You are not alone!

Kara

[waterflow]

The list I don't remember where on the internet I got it but it was 10 pages long. My uro is great and I wouldn't change him but he's done all he can. I went to Physical therapy thinking they could re-set the tens but that didn't help either. Pain is just getting worse with time and the bladder is getting used to the tens. I could maybe try the real expensive tens but I don't have $600.00 or more. I'm tired now. Been trying for too many years getting nowhere. Just worse so I give up. I can't handle anymore. When the tens stops helping I won't have anything for the pain and I know with the way the pain is now the tens won't last much longer.

[Kara29]

See as many doctors that specialize in as many things as far reaching as Neurologists go. Write it all down, what works, who you like as a doc and who you don't and who you think has some answers and who does not. It sounds like your doctor may not be experienced with IC. There are many more things than just a TENS unit that your insurance may cover and you won't have to spend all of that money.

Have you tried the following: Antihistamines, Antibiotics, Antidepressants, Prelief, Algonot & Cystoprotek, Instillations - DMSO, Cystistat, Heparin, Rescue Instillations, Nerve Stimulation, Interstim, BCG (Bacillus Calmette Guerin), Botox, Pelvic Floor Therapies, Diet & IC, Alternative Therapies, Estrogen & Hormone Replacement, Exercise & Fitness....

"When the tens stops helping I won't have anything for the pain and I know with the way the pain is now the tens won't last much longer."

Of course you will have something for the pain when you are tired of the tens unit! Has anyone ever directed you to the pain management message board of the ICN? If not this would be a great time to investigate. You don't have to give up right now, you just stated with treatments.

Pain Management: There are so many pain drugs out there, I can't count them all! (The possibilities are absolutely endless with the combinations of pain medications you can try). You have so many choices and combinations with what I just mentioned and it can take years to find the right combo and doctor. What I am trying to say is that it is vitally important to keep fighting with different treatments and to not give up too soon on any of them. Some of them take 6 months to a year to work or longer. Some of them need adjuncts (other meds added to them in order to make them all work efficently together).

Keep up the fight and find someone who can really help you. This doctor may not have had the right training to suggest and do some of these treatments for you. I bet he's a great person but you need more help.

If you need help or direction, any of us are here to help you out! Just ask and you shall recieve.

Kara

[green_the_fish]

Aw, waterflow :grouphug:

I know IC can be really frustrating sometimes, but you can't give up! I would bet my heating pad that there are still treatments out there that you haven't tried.

There's this cool site I go to called RemedyFind, and they have a huge list of IC treatments, longer than 10 pages. I know there has to be some stuff on there that'd be new for you. Here's the list: http://www.remedyfind.com/HealthConditions/46/hc_display.aspx?&lHCID=46&All=1&&

For example, have you tried Singulair? What about Pepcid? Have you tried Lyrica?

And you know, if absolutely nothing else works, bladder removal is also an available treatment.

But I think.... maybe the problem is not that you are at the end, but your uro is. Maybe he has done all he can, but that doesn't mean you've done all you can.

Hang in there :)

[ICNDonna]

Even if you really like your current urologist, if he doesn't have anything more to offer, it may be time for a second opinion.

Warm hugs,
Donna

[traceann]

I agree with all the ladies here, there are so many combinations of things it's amazing. Don't give up - it may be tiring, but it would be a shame if you gave up just before finding your Silver Bullet!!! ;)

[graceimnot2096]

Don't give up now!!!!!!!!!!!!!!! There are new treatments coming out everyday. It is just a matter of finding the right combo for you. Hope is all we have to hang on to. I'll say a special prayer for you today that you will find the person that can help you in your path.

[waterflow]

My Uro was working with an IC specialist so I won't have to drive back and forth. Remedyfind was the web site. I think I read it on one of your posts green the fish. I took out what I knew I had taken and he looked at the rest. Pain clinic here doesn't deal with IC so they won't even bother with me. Uro talked to them.

(....Have you tried the following: Antihistamines, Antibiotics, Antidepressants, Prelief, Algonot & Cystoprotek, Instillations - DMSO, Cystistat, Heparin, Rescue Instillations, Nerve Stimulation, Interstim, BCG (Bacillus Calmette Guerin), Botox, Pelvic Floor Therapies, Diet & IC, Alternative Therapies, Estrogen & Hormone Replacement, Exercise & Fitness....)

I take the hydroxyzine each night. antibiotics didn't help. anti's tried all, prelief didn't help, algonot I take, DMSO was too painfull, Doing heparin/lido, Pelvic floor therapies didn't help, I'm on the pill, can't do much exercising,
Uro said BCG would be too painful and could make it worse. Even the speaclist said that. Botox I wouldn't dare to do since I have read that sometiem you can't pee after that and need to have a cath in.

Pain pills only helped for 1 hour so that really doesn't help much. I have tried so much I'm just tried out I guess. Taking the bladder out is not an option. I have read about it here on the posts and I would not want to live that way. Plus taking it out I could still end up with the pain.

I will look at the pain boards here but I am really ready to call it quits. I'm sorry about how I feel. I'm glad you guys can keep trying and haven't lost hope but I lost it long ago and can't seem to get it back. Trying is so hard and each time it doesn't work out I end up crying. Plus I feel like the best part of my life is over now. I can't get back the years. I'll see what I can find on the pain board.

Thanks for letting me "vent" this out.

[Trishann]

Waterflow, I once heard a preacher tell a story. "There was a lady that lost her husband and was very grieved. She told the preacher she don't have a life no more, and she just can't go on. The preacher told her,"she is still living but it is up to her how she would be living it." I will never forget that message.

I know it is so hard at times and seems there is no hope, but don't give up. I can't help to believe something good can happen. I don't want to miss it when it comes around. Sometimes I have to remember little things in life that is good.
Maybe it was just a smile, or hugging someone you love, or being thankful over the things you do have in life. Sometimes it takes one day at a time to remember all the blessing that comes your way. Next thing you will know, you become a blessing to someone else.

Grace and blessing, Trishann

[Kara29]

Waterflow,

I gathered from your post that you are currently using, hydroxyzine, algonot, heparin/lido,a pill, and pain pills that only helped for 1 hour. It seems as though this combination isn't working for you, but there are so many other combinations to try with the right Urologist, Primary Care, and Pain Management Clinic. I hope the pain management boards give you some information on pain meds that last longer than one hour. It may be time to find a person you can talk to about your fears regarding trying some of the other treatments. IC is a disease where you have to endure some pain to get down to the root of things. It sonds as though you have some anxiety regarding the rest of the IC treatments, which is completley understandable. But please find it within your self to pull up the strength to take one more step to find another Urologist and 2nd Opinion.

Sincerely,

Kara

[Babs RN]

Waterflow,
IC is a very trying frustrating condition that has so much trial and error that sometimes it feels like you can't go on. We all have points in this that we feel we can't go on, but as a chronic patient and a nurse for quite a while I can say that you have to be an advocate for yourself and an active part of your health care team. I for example saw a new pain doc this week who told me straight up that my bladder was done but that we would work to keep me functional and to be able to take care of myself and daughter. Unfortunately there is no quick fix and this is so individual that what works for me might not work for someone else. Please don't take offense to what I am about to say because it is not a reflection on you...have you considered seeing a therapist that deals in chronic pain. It has been great for me to have an objective third party. We are all here to help each other...

Hugs,
Barb:flower: :grouphug:

[weezer]

Waterflow: What ever you do - don't give up!!! Don't let this awful disease make you feel like throwing in the towel - you want to fight it and and if you do this you will find someone to help you. I know because I have felt like you, just like most of the people on these boards. I don't know what kind of medication your on, but obviously it's not helping. I agree with Donna - you have the right to see another doctor if your doctor can't help. He sounds like he's the one giving up, and you don't want a doctor who is giving up on helping you. I don't know where you live, but I went through the same thing, and it took me seeing 5 urologist's before finding onewho knew alot about IC, and with him working with my doctor I was finally put on the right medication that worked, and now I can at least live day to day with the majority of pain under control. I'm not saying that I am pain free, or that I never have problems ie.IBS, pelvic floor pain, etc., but I refused to let IC destroy me. Don't get me wrong - there were day's I didn't think I could go on - but somehow I got through them and with persistence I finally got help. Life is to beautiful to throw in the towel or give up and everyone on the boards are here for you. They have helped me tremendously. Do you have someone who can help you by going with you to different doctors, who can sit in on consultations and support you??? I found this helped me - my niece who is not much younger than me stood by me (when nobody including hubby, children who are grown, and the rest of my family abandoned me) thinking it was all in my head, she kept me from giving up, and to this day she still goes to all my appointments, surgeries,etc. just for support. So please think about what everyone has said, and stay involved with us and I'm sure one or all of us will help you come up with a solution to your problem because there are answers and there is help. I know it's tough and so does everyone else - but hang in there and please do not give up.
Weezer

[Briza]

Waterflow
What exactly is the pain med that you are taking? Like the others have said there are so many pain meds out there that should give you relief for more than one hour! I agree, you should continue looking for a doctor...uro, GP, pain management dr, even if you have to travel some distance, until you find the one who will work with you on this!

Have you had a cysto/hydro recently? I'm not a big fan of this procedure, it caused me a lot of pain and long recovery, however I found out just recently that the uro found and burned off hunner's ulcers and this could very well be the reason why my pain level has never returned to the level it was before that hydro in Nov 2004.

IC is a tough, I know, we all know. But you cannot give up! :grouphug:

[ICLori]

Argh, never mind, found your post. I agree with everyone else, time to find a new uro that will be more open to new treatments. If the worst comes to worst, you should be able to at least have your bladder removed, which for many people does restore a reasonable quality of life. I know it's very scary, but many people do get better when they have the bladder removed.

Have you tried the following meds: Xolair, Cytotec, Cyclosporine-A, Interstim or Bion devices? There is also a very small study with two women on Adderall who said it made their IC go away within a week. Take the studies on those various drugs/devices to your doctor (all of them can be found with a search on these sites) and see what he says. Not time to give up yet!

Blessings,
Lori

[Trishann]

Waterflow,

I hope you are feeling better today and I hope you found the strength to keep on and not give up. Waterflow, don't ever give up on finding ways of getting better.

I just pray that the love of God will be upon you and lift up your spirit. I pray that God will touch your body and guide you to the right people that can help you.

My heart is with you, Trishann

[waterflow]

Thanks Trishann for asking how I was doing. I haven't changed my mind on this. I stopped looking for anymore treatments. Mind and body wise I can not handle it anymore. Plus there is no one to help me out. I have had to do all of this on my own. No one understands just how painful IC is. It might not make sense to anyone but I won't leave my Uro. He was the only doc who didn't tell me there was nothing wrong or told me to go away. He has stood by me through all of this and when things were done at the hospital he was great. I didn't have to worry aobut anything happening as long as he was there. I'm sure he would not mind me going to someone else. He was the one who told me to see the IC speacilist back in the beginning. He couldn't think of anything else to try and wanted to make sure it was IC. I told him no, I did not want to go but he told me I needed to so I went. We have had times when we didn't think a like on things. I would keep asking him to let me try a certian thing and he said no it would make it worse. Well, after months and months of me asking he finally gave in to me. It made it worse. That's why I won't second guess him anymore. He has been my GP actually for the last 3 years. Haven't seen my GP in that long. My uro is my hope and he is the only reason I've made it htis far. There comes a time for some people to just give up and that time has come for me. My old life is gone for good and I know that. I can't learn to live or accept this so the only way for me to go on is to forget all that has happened and pretend there is nothing wrong. I wish all of you the best and hope you find a way to live with this or to have a better life. Hope I said that right. Can not think of the words. Thank you for all your help. :kiss:

[ICNDonna]

Seeing another doctor for a second opinion doesn't mean you need to change doctors. I saw the same urologist for 30 years until he retired last year. When I was in my early years with IC, I did see another doctor for a second opinion --- my urologist actually encouraged it --- and I returned to him after the second opinion. The advantage was that the two doctors communicated and together developed a treatment plan for me.

I have had diagnosed IC for 31 years now and I still learn about new treatment options.

Sending encouraging hugs,
Donna

[Sarojini]

I think you've been given a lot of great advice, and Donna's last post here is right on the money. Asking another doctor his/her opinion does not mean you need to continue to see that one.

Also, BabsRN pointed out that there are therapists that specialize in dealing with chronic pain issues. This is a great idea. I have seen one in the past, and they give you lots of coping tips for dealing with your pain, and most of all, they give you an hour devoted just to you in which you can scream, cry, vent, laugh... I believe it is quite useful. You come out of the therapy feeling stronger and more capable of fighting this thing, and you sound like you might need a little help right now.

These therapists can be found by calling around to different ones -- many list their specialties in the yellow pages along with their name and phone number. Ask your doctors if they know of any. My pain clinic even provides these therapists for those who need them! :grouphug:

[ICLori]

It sounds like you don't want to go to anyone else or try anything else. Certainly, no one can make you try more meds for your IC. If you don't want to try anything, and want instead to live with the pain of IC everyday, that is certainly your choice.

Like one doctor told me once, "IC isn't fatal, so we don't actually HAVE to treat it..."

Maybe you will change your mind someday. For now, you've made your decision.

Blessings,
Lori

[Kara29]

Waterflow,

It seems as though you are comfortabe staying where you are and not trying anything new. As long as you are ok with living with the pain, We have to honor your feelings. I'm sorry all of the advice I gave to you didn't help you out, I really wanted to help you find a way out of your pain.

I wanted to mention one more piece of advice based on my own experience.
I went to a Urologist for 7 years but there came a time where he couldn't help me anymore, it was beyond his experince, so I had to go outside of my safe place and find a brand new Urologist who happens to be my age, in his 30's. I was so scared to let someone else touch me but he did a 9.5 hour surgery on me that we didn't even know the outcome of and he did an extremely perfect job and was able to go way beyond what my favorite surgeon could have done. Now I am on my way to a better life because I had an open mind and went for that 2nd Opinion.

Good Luck to you!

Kara

[Julie B]

Waterflow, I can't add to what these wonderful folks have already told you....keep trying, get a second opinion, keep reading to find out about new things.......

What I can tell you is this........in 1998 when I was diagnosed, I was in horrible horrible pain, frequency every 15 minutes....I even fell asleep on the bathroom floor once because I figured why bother to go back to bed....

When I was diagnosed the uro said I had a mild to moderate case of IC (HELLO??? What were OTHER People going through???) He also said that at least I wouldn't get worse, but I probably wouldn't get "better" either.

Things have changed SO MUCH since then!!! I see people getting better ALL the time......but it TAKES time....you are doing some very basic but very good things to help yourself. I like the Algonot products and I think Atarax saved my life. (I discovered Atarax by accident, by the way, it wasn't diagnosed for me for IC at first.)

The big thing I found was to REST and take everything off of my plate that I could. It was a BIG issue for me because my kids were jr. high and high school age at the time. I felt like I went from super-mom to super-lazy-do nothing. But I DID get better. The therapies didn't work over night....in fact, if I look back, it took three or four years before I got to where I am right now.

Now, part of where I am is that I have accepted a "new normal." I heard this phrase describing breast cancer survivors who live with the fear in the back of their head that the breast cancer would return. I always feel that way, even as I write this. What if I go back to the way I was??? What if I get a flare and it won't go away??? But I learned that I couldn't dwell on that.......I have to take this disease one day at a time......

YOU HAVE PEOPLE WHO UNDERSTAND HERE!!!!! HUGGGGGging you....please know that!!!!

XOXOXOXOX Julie

[jah]

Just curious--did a cystoscopy with hydro diagnose your IC?

Saw doc today and he said that long list I gave him of "IC tries"....we have already tried or what hasn't could make it worse. So, I guess that's it. I'm tired anyway. I have no clue what to do now. :( I really thought there would be one thing in that big list.

[Trishann]

Waterflow,

I truly understand where you are coming from. I did go for a second opinion, and didn't change doctors. The doctor was less understanding of the IC because he also wanted me to go through all of this stuff, but he did explain to me about things. My other uro. doctor just suggest things and not explain it to me very well but now I know why he did what he did. I will not leave him neither, not at this time.

My uro. doctor said nothing will help only surgery. I am not ready for that because I see to many complication in this procedure right now. I think doctors are still learning too, and trying there best, but if I feel it is not right for me, I will not do it. I refused alot of things and I thank God I did, because down the road it was hurting people more than helping.

But I still believe something will come up and IC will have better treatments. I am not giving up on this hope. I do understand about walking away from it for awhile. I think sometimes we have to in order to start thinking right.

I hope the best for you, Waterflow. I hope you continue to let us know how you are doing. My prayers will continue to be with you and praying that your spirit will be uplift. Trishann

[jah]

Vicadin and Enablex? It sure helped me--with a change in diet of course.

Saw doc today and he said that long list I gave him of "IC tries"....we have already tried or what hasn't could make it worse. So, I guess that's it. I'm tired anyway. I have no clue what to do now. :( I really thought there would be one thing in that big list.

[green_the_fish]

Oh, waterflow, you got the list from RemedyFind? There are over 300 treatments on that list! I mean, I don't understand... that is a lotta treatments!

From your list, I take that you have tried hydroxyzine, antibiotics, prelief, algonot, DMSO, heparin instills, PF theapy, birth control, and precription pain medications. That would be about 9 treatments. I mean, I know it seems like a lot when you're frustrated, but really? You've only gotten to the tip of the iceberg of IC treatments.

You say that you eliminated any treatments that might make you worse. Well, no offense, but that's all of them! Every treatment option has the potential to do that, and they all have potentially disturbing side effects. That even goes for herbal remedies. You have to weigh this against the possibility that these treatments could raise your quality of life.

It's up to you, though, of course. I can't force you to try new treatments if you're not ready. That's a choice only you can make. If you change your mind, you know the majority of IC treatments will still be around, waiting for you to give them a shot.

Hugs :grouphug:

[celine]

Waterflow-I love your online name,by the way.You are in my prayers.I know you said good-bye, but our hearts go out to you.I read all these posts, and started to cry, for there are some BIG hearts out here, some people who by all means they can think of WANT to help in any and all ways they can.So,please consider coming back, talking helps, venting helps, and getting ALL the ideas, help. I copy off lots of things on here my fellow IC'ers have suggested or had help for them, take them to my pain doc and we give it a try. Lord knows how long it will take, but as hard as it is, I still get up everyday, so while I'm at it, I might as well keeping trying to find something to put me in some remission.Right on girl-God Bless you real good Waterflow.Celine

[Trishann]

Waterflow, I went to church today and went to the front to have prayers for you. I know we need time-out but don't ever give up completely. I do believe in medicines and doctors but I also believe in prayers. Do I get upset and tired, yes I do. Do I want to give up at times, again yes. But somehow through the grace of God, I get back on my feet on try again.

Some of this stuff people are writing to you may not help you,
but some of the stuff may help you.

The reason why I refused some of the help from the doctors because of what I read, and down the road, my doctor evenutually said, it doesn't help. But also I ask about medicine I read and told my doctor and it did help, to a certain point.
But any help I can get some relief it is all worth it.

I hope you are gaining strength back, and my prayers will continue for you. Don't think you can't express yourself because I believe "we all" are pulling for you. Trishann

[Trishann]

Hey Waterflow,
Haven't heard from you lately and I am thinking about you. Hope you are ok.
I don't know if you are not writing or reading the post, but if you are I hope you are feeling better. Hope to hear from you soon.