Question about bladder instillations and vaginal health/hygiene

[Notgivingup0702]

This is a question for the ladies (Please forgive me if this is too private, but I am hoping someone can shed some light and assuage my fears)
I underwent my first bladder instillation on Thursday and am having a 2nd one done today. I know that Heparin and Sodium Bicarborate were used in it and there was a third compound that I can't remember the name of (I am going to ask today what it is)

I have read that bladder instillations with these couponds cause changes in breath and skin (to smell like garlic and other unpleasant things). I have already noticed a change in urine smell (it's not horrific, just not what I am used to...it is definately a "chemical" type of smell)

I am VERY self conscious regarding my "personal" smell and am wondering if the instillations are going to affect it. I am nervous to be intimate (especially "up close and personal") if the bladder instillations are affecting me in a negative way in that respect. I asked my boyfriend and he said everything was fine, but he is very kind and respectful I don't think he'd want to risk hurting my feelings or making me even more self conscious by telling me anything negative. (He already knows I am self conscious about it)

If anyone has any insight, opinions or experiences, I would be most grateful.
(Incidentally, It is hard to tell if the instill helped (since it was just the first) but I want to keep having them and see if they help, as my IC is very severe and oral medications have been exhausted and have not helped in any fashion. My new uro gyn also has me drinking 4 ozs of liquid every hour to help normalize my fluids)

Thank you for reading and hugs to all

[ICNDonna]

The only instillation solution that causes the garlic smell is DMSO (trade name Rimso50), and that smell goes away after about 24 hours. You may want to shower when you get home from an instillation to get rid of any residue from the cleansing agent used before the catheter is inserted --- it can sometimes cause some irritation.

I suspect the third ingredient may be something like lidocaine or marcaine, which helps ease discomfort.

Donna

[nottoc4]

My Dr. warned me about a garlic smell but neither me nor my husband could smell it. He used DSMO,2 capsules of Elmiron and something else in my instillations. The instillations really jump started me and helped so much.

[kadi]

The DMSO instillations are the only ones that gave me a garlic smell, but my friends have told me it was very minor. The heparin, marcaine, sodium bicarbonate instillations I do now do not cause any issues with odor.

[Notgivingup0702]

Thanks guys! :)
I had my 2nd instill today and I do certainly notice a "chemical smell", but hopefully it goes away and isn't as bad to others as I perceive it to be. I do have one question. I thought it was a fluke the other day (when I had my first instill) but today the same thing is happening. I am itchy all over!!!

My body is now covered in red welts from all of the scratching (everywhere! stomach, back, legs and arms are especially itchy).
Is this a known side effect of instills? I really want to keep trying them but CLEARLY "something" is triggering this unrelenting all over itchiness!

[kadi]

Sounds like an allergic reaction. I think you should call your doctor.

[Notgivingup0702]

Thanks Kadi :)

I just talked to my mother about the itching and she realized I started using a new bathtub cleaner when I went shopping Friday, so she said maybe I am having a reaction to that (she could be right...I took a bath Saturday and had the itching that night, and also today and had the itching)....I took a shower yesterday and had no itching...HMMM. I am curious to see what it's like when I wake up tomorrow. If I am still itching bad, I am going have to give the doctor a call.
It could be the instill or the tub cleaner. I always forget that any little thing can affect us.
I am now also noticing pimple like bumps on my chest. Very weird.

[kadi]

I hope it's the cleaner!!! That is much easier to resolve...

[Notgivingup0702]

The itchiness seems to be subsiding a bit...so perhaps it was the cleaner.
It's weird though, I felt a big difference after the 1st instillation, but not so much after the 2nd. I am trying not to get discouraged, but I was so excited after feeling relief from the 1st one.

[nottoc4]

You might want to take some Benedryl and see if that helps. When is your 3d instill?

[Notgivingup0702]

The 3rd instill isn't until next Monday. I was told originally that I needed them 2-3 times per week, but with the appointment being next Monday, that's a whole week in between instills.
I hope I am not messing things up by waiting so long. I REALLY need them to teach me how to do them at home. I hope it isn't hard to do. I can't afford the $20 co pay each time.

I did take some Advil PM last night and it has the active ingredient in Benadryl, and I think it did help with the itchiness!

[IcyAngel23]

The 3rd instill isn't until next Monday. I was told originally that I needed them 2-3 times per week, but with the appointment being next Monday, that's a whole week in between instills.
I hope I am not messing things up by waiting so long. I REALLY need them to teach me how to do them at home. I hope it isn't hard to do. I can't afford the $20 co pay each time.

I did take some Advil PM last night and it has the active ingredient in Benadryl, and I think it did help with the itchiness!

I do home instills and once you get use to it, it is very easy to do. I think it's easy because of the caths I use (lo-fric FEMALE 10 from Astra Tech) You can't hurt yourself or go to deep with these caths. They don't cause burning or added pain afterwards. I dip them in water and they become slippery and there is no need for lube or lidocaine. They are amazing but cost a bit more than the regular caths. Totally worth it. If you compare the red caths with the lo-fric one you'd fall over at how small the lo-fric ones are. They look like the small coffee straws (very thin) and go in without pain. At one point i was doing instills (years ago) twice a day and never had burning with the lo-fric caths. Didn't even need pyridium.
i'm using Uracyst with amazing results and I use the lo-fric caths to instill it. Lo-fric is a cath made for ICers and the makers really thought of comfort.
Good luck with your instills.
Hope this helps. PM me if you have any other questions