Not sure where to go from here...

[Nugget]

I was diagnosed with IC in January 2009 after a cystoscopy. At the time I was not comfortable with the idea of using a DMSO treatment and so I just did 6 heparin instills over a 6 week period. I got 1 addtional instill and was pretty much IC symptom free all summer long (I couldn't believe it). My husband and I are at the point that we want to have a child so that played a big part in me not wanting to use DMSO in my treatment.

I have not had any success in the past 5 months or so in getting pregnant. This past month I started noticing my IC symptoms again. I don't get pelvic pain but more of a urethral pressure or "pushing" feeling down in that area. I am constantly aware of this pressure unless I am sitting or lying in certain positions. The sensation drives me crazy and makes me have terrible anxiety as to how bad my bladder might be inflamed right now. Back in January it was pretty bad, the Dr. said, "significant inflamation". I am not sure what to do becuase I have in the past few weeks had two more heparin instillations and I feel worse now than I did before I did the instills.

I am going to call my Dr.'s office on Monday but they only ever suggest using a DMSO treatment and were not very supportive of me just using heparin. There are no other urology clinics in town though there are other doctors at this same location. I am not sure if I should ask to see a different Doctor in this same group or if that is inappropriate. I am considering even going to the Mayo clinic but couldn't do that until January and have to figure out something to do in the meantime.

I feel that if the heparin instills aren't working anymore maybe I should consider DMSO, but that means putting off trying to have a child right now and that really bothers me. I am already 30 and I don't want to put off trying for a baby if conceiving could be difficult for me (which it apears to be since its been so many months). I don't know long term if DMSO could cause future risk with a child even after the treatment was over.

I am just at a loss here and am very upset and frustrated. If I was past the point of having children there are so many other treatments I would be willing to try but I am terrified of doing anything that could negatively affect a baby...

Any ideas, support, or comments are welcome. I just feel alone here...no one around me understands this and I am feeling hopeless at this point...

:(

Nugget~

[Skynard]

I am sorry you are having such trouble. I will keep you in my thoughts and prayers.

There are so many different types of installations. I tried the DMSO and I got worse. Then they switched me to Marcain and though my IC symptoms really improved, I had side effects (light-headedness for over five hrs). Come to find out the other ingredients that make up the cocktail contain preservatives and some people have trouble with them. If you are not satisfied with your current doctor, now is the time to switch. There are so many options out there.

I can't help you on the pregnancy questions, but there are several IC'ers on here that are currently or trying to get pregnant, so hopefully you will get some advice.

Remember....stress is NOT your friend.

Wishing you well.

God Bless,

Skyn

[Nugget]

Skyn thanks so much for the reply. I know I shouldn't stress but I am feeling worse everyday. I see the Nurse tomorrow and am probably going to end up getting another cystoscopy. I am going to request another Doctor and see how that goes...I also need her to authorize another installation meantime before I go insane from this discomfort/pain.

My constant pressure is now turning into a burning pressure. I feel as bad as when this all started back in January, possibly worse. I just cannot understand why so many people have IC there is so little known as to the cause. The lack of options for treatments offered at my Doctors is so ridiculous. I just want some relief before I completely have a melt down.

Again, thanks for the kind words and support.

Nugget~

[Skynard]

Have them check you for a UTI.....

[Mothergoose]

Nugget

Hi it is okay to get a second and 3rd or 4th opinion, see as many Dr.s as you need to get help. My newest uro who I like the best dosen't do instills,well he does but with DMSO only. I can totally understand not wanting to get DMSO while tring to get pregnate. When you go to the Dr. take info printed out about other instills you would like to try, sometimes the Dr.s just don't know what all there is to try. Be your own advicate.

You didn't mention following the diet, if you are not following it do yourself a favor and start today, I fully believe it helps alot. At one point I didn't think I was diet sensative because my bladder was screaming at me all the time no matter what I ate, but I was eating things all the time to make it scream at me, now that I follow the diet I know if I eat something I shouldn't or Ican't tolerate because my bladder will let me know. I know you were good for months and when I am good I can eat way more things than I can when when my bladder is unhappy. But the diet is something you can do and is got for pregnacy.

Good luck sorry you have this bad sensation all the time it is not nice. MG

[tigger_gal]

have they given you any hydroxizine or prydium?

[Nugget]

I went to the Dr.'s yesterday and saw the ARNP. The gist I got from her is there policy is not to go outside there current procedures. So no matter what Doctor I see, if I bring in a valid idea for a new instillation to try, they won't do it. The only place I could drive too that would be beneficial is the Mayo clinic, but that could take months on their waiting list.

Have them check you for a UTI.....

I did and all was clear. I did request that she read off to me exactly what the doctor saw in my first cystoscopy and she said he listed I have polyps in my urethra but they weren't removed? I thought all polyps when found, no matter which part of the body they are in, should be removed...

Is that strange or am I just uninformed on this?

You didn't mention following the diet,I do try and follow the guide for the IC diet. My diet is very limited because I cannot figure out if I have food triggers or not. All this discomfort and pressure came on very slowly so I have no idea if it was food or something in the environment, or stress. I know most people find me ridiculous because I have become afraid of food...in the sense that I am worried whenever I eat something I will regret it later on.

have they given you any hydroxizine or prydium? The nurse gave me something called Utira-C and the pharmacy gave me a generic called Darcalma...they are bright blue. I can't tell if they are doing anything yet as I have only taken one as of last night.

On Monday I am going back in to have another Cystoscopy done. I want pictures of my bladder and urethra. Last time the cystoscopy greatly relieved my urethra pressure. I also want to question the Doctor directly about the polyps, but I want more information on them before I go in.

Thanks all for the support! I really appreciate it!

Nugget~

[Nugget]

Well, I had my cystoscopy today and the Dr. said my inflammation is even worse than it was in January. He took me off of the Utira-C because he says it has Vitamin C that could cause further irritation. He put me on pyridium (sp).

Once again he said he wants me to start DMSO treatment and I am not sure I want to do that....I am also not sure I want to continue to be in pain. I feel like no matter what I choose I am risking something (dmso bladder damage/pain and risk to a possible baby, and heparin not taking care of the inflammation).

I can opt to just do heparin instillations again but am not sure if that would be effective. My bladder capacity was actually better though than last time...so at least it isnt' shrinking.

I hate not knowing what to do...it makes me crazy.

Thanks all for your support in this!

Nugget~