Newly Diagnosed w/lots of questions-Scared!

[Cogates]

Hi All,
I was just diagnosed 2 weeks ago--although I have been dealing with this condition "off and on" for the past 6 years. When I first got it, the dr. did urodynamics and filled my bladder while I was awake. I also went on ditropan. After a while, my condition went away and it didn't come back for 5 years. When it came back, the dr. did a similar procedure (along with urethra dilation, and the condition went away for another year.

It came back on July 1st, '08 and has been relentess since! My dr. did a hydo under anethesia and diagnosed me with IC. I had a bladder biopsy too. The pain was incredible!

One week later, a nurse (per the dr.'s instructions) did a DMSO. It killed!! Made it worse. I had another Dmso the following week (last Wednesday) and that was really painful too.

After reading alot on this webite, I asked my dr. if the instill was less than 50% DMSO. He said no--the FDA allows 50% DMSO. He didn't know what a rescue instillation was. I let the nurse do a 2nd instillation w/DMSO. She added some marcaine to it--because the dr. told her it was okay dilute it a bit, per my request. He had never heard about doing DMSO @ 25%. I'm scared about this. What should I do? I am suppose to have another DMSO next week.

Other questions:
Will I ever be able to have sex w/my husband again? How about if I go into remission?
Can I ever drink wine again?
Does everyone know what is in their DMSO? (I don't.)
Will I ever get any relief from the frequency?
Do the nurses do the instillations in all of you? (My dr. just sent me to a nurse--didn't tell me what it was and what was going to happen.

I am so depressed!!! Can anyone help?
Thanks,
Cg

[stef000]

first thing is calm down a bit and breathe...
it can be quite overwhelming sometimes....
theres a good thread called relationships and something else (under the family and friends forum below this one---romance and sex is the thread to look into and theres a good thread called jens tips for great sex so it will help ya out.... also you can take antispasmodics either before or after so yes you can have sex again (and cold compresses help me)
if you get things to a manageable level you may get to drink red wine again...
there are so many treatments out there for us that once you get the right one, sometimes you won't even know you have IC....
it is a bit frustrating though since that takes a lot of trial and error but people have gone into remission....so there is hope...:smile tee
i have never had DMSO but there is a thread called that too so check it out..
there are antispasmodics available for frequency such as ditropan, detrol, sanctura, vesicare....i am sure there are more.... they are for overactive bladder but they work for some of us for the frequency....some people like muscle relaxants such as flexeril, baclofen and others....
as i said there are so many treatments out there that once you find the right one it will be good...
not all of us do instills....its either personal choice or the doc doesn't do them...i personally have never had an instill.....
i have been doing trial and error with oral meds...
we are all nice people here....you have come to the right place....
any question you have is a valid one....:smile tee
just remember you are not alone...ok?
we are all here to help each other out through this....
message me if you need to vent....
i do hope that we can help you out and that you find relief real soon...
:pray::pray::pray:
and with any meds or supplements always ask your doc about it and check the interactions and such...
take it easy and take care
BIG HUGS
:grouphug::grouphug:

[cindydi]

I am not familiar with DMSO. I believe the first line of treatment is the Elmiron. I had ALOT of pain with heparin instillations and a declined the treatment after that.
I would say listen to your body. We are all so individual. Some doctors read the medical journals and go with it in every patient.

As for you questions about wine/sex. I asked the same questions. I can say that it was a hard battle, but I now have my IC under control. Sex and wine is good with me. (I still have some occasional bad days, but not like when I was 1st diagnosed!)

Research different treatments and work with your doctor to find the one that works for you. If this doctor doesnt have ideas, contact the ICA who will give you a list of docs in your area familiar with IC.
Think Positive, things will get better.

[leelee88]

Cogates,

It does not sound like your Dr knows to much about the treatments for IC!
BUT if you trust him you might be able to work with him.. If he is willing to listen to you..Reducing the DMSO to 25% Is recommemded by many Drs even my URO only does the 25% solution. I choose not to have this treatment and decided to try the rescue instill insteads. And so far so good! But if you do not feel comfortable with DMSO treatment and he will not offer you anything else then it might be a good idea to find another URO..There are SO many other treatments available out there!!

[SharonA]

:welcome: to the ICN... :):):)

I can hear the panic in your words. It is very normal to feel completly overwhelmed in the beginning. I do want you to know that there is hope and there is help.

Like it has already been said, there are a lot of meds/treatments what can help you. I suggest you take a look at the information available in this link. It will help explain the different things to you.
http://www.ic-network.com/treatments/

If you haven't yet, I suggest you begin the IC Diet right away. You can find the link included in my signature below. Pay special attention to the elimination section: http://www.ic-network.com/diet/eliminationdiets.html
All the information about the Diet will help you understand just how important what you eat and drink is in controlling your IC symptoms.

Yvette recommended a doctor to you in your other post. I think it would be a good idea to call and make an appointment with that doctor. It sounds like you need a second opinion and a doctor who is knowledgeable in IC and it's meds/treatments. This is the link to that post: http://www.ic-network.com/forum/showthread.php?t=51552

Getting a diagnosis of IC is not the end of everything you enjoy. Things may change, but there is no reason why you cannot expect to live a very full and exciting life that includes a wonderful and intimate life with your husband.

(((Hugs)))

[ICNDonna]

The brand name for DMSO is Rimso 50, which is 50% DMSO --- usually when it's instilled it is diluted with sterile water, which further dilutes the solution. If they are mixing a "half Rimso/half sterile water" solution, that makes it 25% DMSO, which is a safe level.

When I first started DMSO it was very painful and I was ready to quit after my second or third instillation --- then one night I slept through the entire night! That was enough to convince me to continue. I had eight weekly instills, then one a month for several years before it quit helping. You might want to ask if they will instill lidocaine first; that helped me with the pain.

Donna

[sickofmybladder]

Welcome -

I just wanted to give you some encouragement. I was diagnosed last August - and have just passed 1 year :woohoo: - I am absolutely doing MUCH better than a year ago - but it has been a year of trial and error.

What works for me - may not work for you - so you need a doctor that understands IC and is up to date on all of the treatment options. For six months I was seeing a doctor - who I truly liked and I was very grateful that he could FINALLY find out what was wrong with me - but treatment options were limited - I finally went to see an IC specialist that is about 1 1/2 hours from my house - but it has been well worth it. He added onto my treatment plan and I seem to be improving still. Now - I tried some treatments that did not work and it takes some patience - but hopefully you'll be able to find what works for you.

Regarding DMSO - I did 3 instillations (at 50% because my doctor (my first IC doc) did not dilute them either) and had a very difficult time - so with my doctor's blessing - I switched to the rescue instillations. I had several done in office - and once we could tell that they were helping - the nurse showed me how to do them at home. So if you discover this helps your symptoms - you do not have to go to the doctor everytime you need one.

The IC diet is crucial - I had no idea how sensitive I was to foods and beverages until I did the elimination diet and started adding foods & drinks back in - OH BOY - it did not take long to find what items were on my absolutely not list - and it didn't take me long to figure out that the pain was not worth - whatever food or drink I thought I was missing out on. I personally can not tolerate any wine - but occassionally can have a light beer as long as I drink water with it as well - but again all of us are different - so I can't say if you will be able to have wine again - but before you try -you need to give your "injured" bladder a break.

Regarding sex - definately check out the Jen's Tips on the thread mentioned in a prior post. Has my sex life changed a bit - sure - but that would be the case with any illness etc. - but we have adapted and yes I am still "active" - just not as often as before (but often enough that hubby is not complaining - :) )

This board has been a lifesaver for me - when I was diagnosed I was sent home with a pamplet and a very small list of foods to avoid - through this site - I gained more information regarding foods - found the doctor I am seeing now - and discovered I'm not alone in this - I hope you find it as helpful as I have.

[L. Thomas]

I have never had DMSO instills. I do home instillations. I have no food sensitivities so I have no food/wine problems. I don't have any problem with pain during sex.

It does sound like your MD may not have a lot of current information about IC. Many MD are very receptive to treatment options and are very willing to try other treatments when they have information about the treatments.

There are a lot of ICers like me that have successful treatment of IC. If you have questions post. You will find a lot of suggestions and information on this site. Be sure to look at all the boards for threads that my give you more information.

Remember we are here to support you.

Louann

[elamar]

I did seven weeks of dsmo cocktails and got worse with each one. I went to a new IC specialist who thought I was nuts for getting those instillations. They are considered outdated by most IC specialist - the ones who are up to date on current trends and meds. If it is hurting you, don't do it! I only agreed to keep doing mine because my doctor told me that she wouldn't try any other options until I did the dsmo treatments. Then when I finished the treatments, she shrugged her shoulders and said there wasn't anything left to try. I could have killed her for putting me through that. I felt it put my "recovery" behind by months. I'm not all the way better, but have improved since switching doctors and meds. Good luck to you.