Well, I had my Urodynamics testing

[suz z]

Hi L, I've been posting since 1997. In 2000 they changed the software so everyone at that time started the numbering again. That year I moved to VT from South FL and because of the great distances here I can't get a group together and have to do support by phone and email. ICA people call me too since I am also on their list.

I don't know where I would place myself in the continuum. It's something about the bladder but now I don't know exactly what. My new uro as of last week is wondering and she is going to do a cysto next week - haven't had one since the original in 97 but this time it will be only in office and just a peek into my bladder. I am curious about what she sees. I have done home instills for many years and it really did help. I was even in what I thought was "remission" for a while, but maybe it was just acceptance. Dr. Dell sounds great! Glad to know there is so much more interest in IC now. If we could just get one of those SuperPac's to raise money for IC

[L. Thomas]

I am still here. I hear what you are saying. Bummer. I think you were probably not posting very often when I joined. I do instillations as needed. So far everyting is great. It has been about 8 years since I was diagnosed. Dr. Dell diagnosed it as "mild IC" so I can't imagine the problems of more advanced IC. I continue to post because Dr. Dell encourages because so many don't know the opition of home instillations.

[suz z]

KatieB, don't know if you are still here to read this. Or others who want to read this:
I was Dx with IC in 1997 outpatient hospital setting, with an epidural, bladder distention to 700cc (the reason for the epidural) and bladder biopsy to rule out bladder cancer. Treated with the usual protocol of the time. The IC started 6 yrs afte hysterectomy so I don't think I can say that was the cause. Anyway, a few years later I started to have trouble starting to pee and having some retention. I don't think they were doing urodynamics then, or not regularly - no one suggested it. I was taught to self cath and to do self-instillations. I was ok and felt pretty much ok at that time. Now 15 yrs later my bladder is shutting down and I can't pee, so just had first urodynamics test which shows I have a neurogenic bladder - so it's caused by the nerves at the sacrum, probably from a slip and fall when I fell directly on it really hard. Anyway now I have to self-cath again. I will do it. Having trouble starting again but I know I will get past it. There are kids in wheel chairs who have to self-cath and lots of other people a lot worse off than I am. So, I have to stay positive and hopeful.

Pain is relative and no one can judge your pain but you. That's why they have pain charts at the doctors office and they ask if you are experiencing pain and if you are you say what number and they believe you. This is great. And new since I was diagnosed, and before I was diagnosed no one believed I was having pain. So, things are a lot better for everyone in spite of some snafus here and there. I found that when things go wrong, which they do sometimes, I just have to speak up assertively but respectfully and the problem will be corrected. I say what the problem is and ask for their help.

I haven't been here much because my husband is ill and there is so much to do, but I am still an IC volunteer locally - people even call from other places because my phone number is printed on the list of state volunteers. Jill, Donna and others have been so helpful to me when I was diagnosed that I feel privileged be able to pass this forward, as they say now.

All the best to everyone!

[glam46201]

I can relate to the urodynamics testing. I was pretty much forced to go or not come back when I had a problem. The uro told me "there's nothing wrong with you", "you shouldn't be on anything". The pain during the testing and after was something I'll never forget, worse than the other cystos.

I've had 6cystos in the last yr and a half, 2 uros, (they work together). They keep telling me everything is normal but my uti test strips always show traces or more. They thought it was IC but then weren't sure, told me to start low dose Macrobid, then told me to stop it. Sometimes Macrobid and Norflox worked, sometimes it didn't. I've been struggling for 15months, seems it all started after a trip to the swimming pool and my hormone changes.

I am currently awaiting an appointment with a uro/gyno, female specialist. It seems hot flashes bring on a uti or symptoms of a "negative" uti. I am coping with pyridium, (azo) and D mannose with a 1-3 drops of oregano oil with the D mannose.

If anyone has any advice or words of support/help I would be very grateful. Reading others' stories have also helped me.

Thank You

[ChrisNes]

I want to post about my doctor appointment and Interstim implant.

I have been put on a 3 month waiting list for a trial Interstim. The specialist I saw tells me that not only will it help with my IC pain, he said it would help with my chronic pelvic pain, my back pain and help my bowels. He said i am a good candidate for the device.

The doctor at the Pelvic Floor Center in Minneapolis tells me basically I have nerves that are miss-firing and they are sending messages of pain to my brain. He says that these nerves some how start sending the wrong message.

I do not want to wait the 3 months if it will help me with all of these areas of pain.

The doctor tells me my Burch or what he called 'a bladder vault suspension' is still intact. He doesnt want to go in and operate or remove the scar tissue. He says i am at the age where i should start menopause so when that happens the endometrosis will stop growing.

I also had a bladder scope and the Dr. gave me some peridium s.p. to numb the bladder and an Rx of Tramadol...it seems to help some.

[ICNDonna]

While some tests do require anesthesia --- the one that comes to mind is hydrodistention --- there are other ones that actually need for the patient to be awake and responsive. When I had my urodynamics test, I was awake and followed the instructions of the physician during the test.

Donna

[shlar]

Help to KatieB regarding the tests

Hello,

I know what you are going through. I had several installations and tests before I told whoever I went to that I must first be put to sleep. Only by being asleep will you not feel this pain and only be being asleep can the tests be done accurately. So, please, see someone who will put you asleep and use a numbing oitment and injection.

My daughter just had these tests and she was asleep especially for the cystoscopy.

I hope this helps. Sharon

[Mothergoose]

Keep us posted on how the hydro goes. Ask for painmed even if it is only for a few days, you may need them or you may not, but better to ahve and not need than to need and not have.

MG

[greeneyes]

MG, thanks for the advise, I like my uro but I do think he's going at this a little conservative he has done the instills added emiron, vesicare and no pain meds. After the cysto I had to get an emergency appt with his partner (my uro was out of town) due to the pain and that's when I had my first instill, I saw my uro the next week and we agreed together to continue the instills, 7 or 8 weeks later I saw my uro for a follow up appt we spoke about other options of treament, my hesitation of doing the hydro due to the severe pain after the cysto, YES i will be sedated for the procedure but he never once offered any pain meds but to be fair I never asked for them either. He also said he didn't think I needed a rescue instill after the procedure. I figure once this test is done if he doesn't give me something for the pain I will try another uro. I recently found a uro-gyno in my area that specializes in IC and I plan on making an appointment with him. One last thing I do plan on asking for pain meds, my test is on a Friday,my husbands working out of town and I don't plan on spending the weekend in severe pain. I will keep you posted.

Katie I understand why your so upset but we do hope you come back.

[Mothergoose]

I have had this happen, not too much pain or discomfort during the procedure but afterwords, bang it hits, big time.

I figure for me it is spasms, I have found that if I take 1 or 2 ativans (benzos) it works great for this and fast, mine just dissolve under my tongue.

Maybe you could call in to the Dr's office and explain what happened after the cysto and ask for a Rx for this or some other anti spasm medication prior to test Incase this happens to you again, it not like you need a script for very many of them.

For me it happens every time and this works fast, I usually only have to take it the one time the sooner the better, this is why I say ask for a Rx ahead of time. For me the spasms hit before I can even get my cloths back on.

If you can't get a script for this, my next best suggestion is too take a couple of OTC AZO, it will at least numb the bladder, and or maybe a couple of Tylenol or what ever pain meds you have, not a NSAID right before the hydro, hopefully they will give you some pain meds when they do the hydro or right afterwords.

You didn't say will you be awake or asleep for this? Doctors seem to do it both ways, although in my opinion you need to be put out for it, and if this is the case they will give you something in recovery for the pain if you get it again.

Don't worry about it too much it will only make your bladder worse, I know easier said than done.

Let me know how it goes for you MG

[greeneyes]

My uro used lidocaine gel and spray before my cysto, I had little pain during the procedure it was after that the severe pain started. I have my first hydro scheduled next friday and I'm terrified:

[Shadykate]

I am having one tomorrow.

Uro says he needs to rule out other things. I'll let you all know how it goes.

[Mothergoose]

flowerangela

I agree with what you wrote totally, well written, if I come across posts I don't like, I just don't read them, once in awhile I find there is a person I just don't agree with or they always seem to be looking for an arguement, I just choose not to read their posts.

I agree we need to stay positive and be prooactive with our own health care, keep your self educated about IC, and be willing to help educate you dr's, and other healthcare workers.

Yes sometimes it takes searching a lot to find a good dr. no there is no cure at the moment, but that could change tomorrow. At least thats what I focus on.

Lucky for us there are quite a few treatments that can help, maybe not all of them will help all of us, but most people do find things that do help them.

I have had IC forever and as my body changes I find what works and dosen't work changes, so I find I have to keep on open mind and sometimes I need to go back and retry things that didn't work in the past, or as I read here try past things in a different ways.

Sometimes pain blinds me and I need someone here to remind me of something simple I can do for myself.

I think one of the hardest things is you find something that works for you and then you get a bad flare and you just don't know what you have done to get the flare. It is hard to take that you feel you are back to square one again. Sometimes it passes quickly and maybe you don't figure it ouy maybe it lasts and you have to change what you do, but stay positive and it will pass in time and some hard work.

best wishes to all MG

[flowerangela]

awww i hope katie really isnt leaving us.i myself have had to take mini breaks from this board because of some of the negativity here makes me feel worse just reading it.in the beginning around diagnosis time, about 4 months ago,i was at a depressed,negative point too so i can relate to alot of the "negative" posts here.

this board is a good place to vent and i am glad we have it.we just have to pick and choose what we decide to read and take to heart. all of us are humans here and living with a chronic condition or more than one.we are all very different in our personalities,opinions,and even ic/our bodies.we all should become united by what we have in common--our illness--and not become enemies.

no one is right or wrong for what treatment plan or options for their health they choose to take. its their choice. if theres "no cure'' we might as well try everything possible we can to get better or do as much research as we can right?

i agree with poohs post about" Remember, you are in control of your body and what is done to it. Often I think we forget that doctors are not gods, and they have to have our consent. If he does not understand when you tell him your concerns it might be time to see another doctor."

if something is not working for you or a dr isnt,its time to make a change.dont just sit around and complain about it.express your concerns.

i've decided i'm going to live my life anyway through all this pain and believe there is a cure or almost a cure for me.i am not going to wallow in self pity..my life is not over.i am not giving up on the race.

be thankful and grateful for what you DO have. life can change in a minute and you could lose everything you have/own and/ or people who care about you or make life better for you. that's one of the many lessons i am learning from watching the recent tornado victims on TV here in the South.

for example a roof over your head, a job or social security disability, a spouse or relationship,food,family,friends,access to the internet,access to doctors and medications and so on.

i realize alot of the older women or people who have dealt with this for awhile and have not found a good treatment plan or what works for them continue to wallow in the self-pity stuff. one thing my counselor tells me is to never ever give up,even when life seems hopeless.

having support from other non judgemental ic patients,caring family and friends and professional health care workers are what are helping me get through this. like many of us i never thought it could happen to me,but it did and now i have to live with it the best i can for myself and try to have a positive attitude about it.these are the cards god has dealt us. we can overcome adversity,or,we can wallow in self-pity.i choose to overcome.

i do know theres a lot of us suffering out there that need to vent but maybe we should do so in a blog or write it down in a journal sometimes.i agree with the people who keep emphasizing we are all different and theres no treatment that works for everyone. it is hard living with an illness the medical community says theres "no cure" for.add other illnesses on top of this illness like many of you have and it can make life unbearable at times.

[ademasters]

In about 2 weeks I am going to have Urodynamics on a tuesday and cysto/hydro on the next day. This will be 4 hours from my home, not sure how long it will be until I can come home after wards. Part of the urodynamics is to confirm or deny whether or not i need my bladder and urethral suspension fixed.
I am not really sure what to expect, from any of it.