New to IC, Cystoscopy on Monday

[Butterfly34]

Hi there

I'm sorry, I have to start with a big moan and thank you for your patience - I know you can all relate to this!

I'm new to all this, 34 years old and petrified. My urologist thinks it's IC - For the first time I had very bad cystitis with frank blood in mid August treated with antibiotics, It seemed to go away, then bladder pain came back two weeks later and has been constant for about 6 weeks - can't sleep (taking Stilnox), am an emotional wreck (lack of sleep not helping) and am losing weight as I've been trying to avoid typical triggers. I have had a bit of cramping in my leg the last two days and wonder if this might be vitamin deficiency as a result?

I have a huge number of questions
Is doing the cystoscopy a good idea?
Is this hormone related - it coincides with 2 cycles of fertility treatment?
What pain relief works?
Has anyone heard of Bladder Q of the naturalbladder? Does it work?

I would really appreciate any suggestions for a newbie and feel grateful to have you all to consult on this - my husband is amazing but It is a scary and lonely place.

Thanks
Butterfly34

[~*~Christine~*~]

:welcome: :grouphug:

It's hard to diagnose IC with a cysto without a hydrodistention, unless there is a lot of scaring and/or ulcers.

Nobody knows, for sure, what causes IC so I don't don't if it's hormonal. It's possible that hormones triggered your IC but whether or not it caused IC is a different story

opps, forgot the other question. Pain killers are perscribed for ICers but it can be hard to get a percription, sometimes, it all depends on the urologist.

[Sydtek]

hi butterfly!
I'm also completely new to this forum, and new to the diagnosis of IC. I'm only 23, though I've dealt with bladder pain and chronic UTIs and vaginitis and yeast-infection type symptoms off and on for years now. so unfortunately, I do not know very much about some of your questions because I am for the first time getting some of these tests done and starting off on different meds, treatments, etc.
what I can share with you is how I have dealt with my bladder problems and chronic pain and crotch discomfort over the years.
Mostly because my immune system was trashed by western medicine and I was still chronically sick, I stumbled onto eastern medicine, specifically chinese herbs and also acupuncture. I have found acupuncture to be VERY VERY helpful for dealing with chronic pain, for settling the nervous system too, for regulating my metabolism, appetite, sleep and especially depression. There have been times in my life where I have gotten acupuncture twice a week to combat my illness, other times I can just go for a once monthly treatment.
Another thing worth looking into is herbs and diet. Something I will HIGHLY recommend is a book called The Body Ecology Diet by a woman named Donna Gates. This book basically explains how most of us are walking around with candida, which is a type of yeast that grows in our digestive system. For women, this yeast can be especially horrible when it gets out of control because it exits the body through the vagina. The diet has helped me regulate my moods, regulate my period and smooth out my PMS and hormonal cycles in addition to really combatting itch.
I have a lot of information and knowledge about nutrition, herbs and eating for wellness that I have found over the years and would be more than happy to share as much as I can with you.
Feel free to ask me any kinds of questions, again, I'm sorry I don't know too much about the western medical approach because I'm just now coming back to western medicine.

One thing I want to recommend to EVERYONE: Grapefruit Seed Extract. If possible, get it in a liquid concentrate. It is oen of the strongest natural anti-biotic, anti-viral, anti-fungal things out there. It is great for staving off infection, killing yeast in the body and preventing overall illness. It can be used to treat non-potable water (I used it to treat my water when I traveled in India for 6 months and did not get sick at all!!) and unlike antibiotics, it DOES NOT compromise your immunity by killing off the good bacteria and making you susceptible to yeast infections. Track some down at your local healthfood store...

Take care everyone!!
-Sydney

[~*~Christine~*~]

:welcome: Sydtek

Dosn't the grapefruit seed extract irritate your IC?

[Butterfly34]

Thanks both for your messages. I'm sorry you've been suffering for so long.

I'm also having hydrodistention and a possible biopsy + a CTU so it will be a big day on Monday.

I live in Hong Kong so am lucky enough to be getting acupunture already (hasn't helped yet - they said wait for a few weeks, I'm going 3 times a week) although the the Chinese doctor hasn't yet prescribed any herbs (maybe once he gets a proper diagnosis from the urologist?).

Christine, Is the Flax seed oil working for you?
Sydney, you mentioned good bacteria. Do you take acidopholus tablets?

My urologist has already mentioned Elmiron so that looks like it's on the cards already, pending Monday's outcome and whatever I can get for the pain/sleep.

Will keep you posted

Good luck

[~*~Christine~*~]

I actually take the Flax Seed Oil for my Sjogren's Syndrome but it helps a lot with inflammation all over the body, as well, including the bladder :)

EDIT: btw, good luck this Monday, please keep us posted :grouphug:

[vm]

:welcome: Butterfly! Glad you found us. Hormones certainly do seem to effect existing IC - lots of women experience more discomfort or less discomfort during their menstrual period.

[ICNDonna]

I'm very glad you found us. I do understand how overwhelmed you are feeling right now. I'm glad you are seeing a urologist who will be doing the testing to determine exactly what's going on with you. And some of us (me included) find they have relief for months after a hydrodistention.

The Patient Handbook at http://www.ic-network.com/handbook will give you some excellent information about living with IC. It's always good to know and understand the treatment options being offered. And you'll find the IC diet there, which is the one single thing that effects almost all of us.

When you're reading, take some breaks --- it can be too overwhelming to try to take it in all at once. Just remember that for every individual posting here because they are in pain, there are literally hundreds out there who have IC, but are not posting because they feel good and are getting on with their lives.

Sending warm healing thoughts,
Donna

[Butterfly34]

Hi

I hope you are all having a good day/week.

I had the hydrodistention and it looks like I have early signs of IC. I'm taking some time off work to relax and a hot water bottle is helping me get some sleep. the doctor said that I should get some relief from the hydrodistention (like you mention Donna) and I'm just waiting for that to happen. I'm feeling a bit less emotional though, I think those hormones (fertility drugs) were really screwing me up on top of everything else.

It does all seem to be happening at once though. I have some tingling in my fingers and numbness in my arm. I thought I was worrying myself into a stroke but am told I have cubital tunnel syndrome (the nerve under the funny bone is damaged, pressured by muscles next to it or strained - have to rest it now).

Thanks for the link to the handbook. I'll have a good read of it soon - I've just been reading the IC cookbook which I ordered off Amazon, looks like it might be helpful too, although daunting.

By the way - have any of you heard anything good/bad about Bladder Q by TheNaturalBladder.com? Testimonials look good, I'd like to try something 'natural' to start off with but am reluctant to buy off the internet without some objective advice?

[ibtracy]

:welcome: to the ICN. I wish you luck with your Cysto/Hydro. Do read the ICN handbook when time permits, there is a lot of valuable information in there and many books available in the ICN shop to buy as well for a wealth of knowledge on IC. Like Donna said, don't overwhelm yourself. A little reading goes a long ways sometimes. Welcome to the ICN family, we're all here for you whenever you need someone.

Tracy K.

[Sarojini]

:welcome:

I don't really know about BladderQ, but perhaps someone on here has taken it and can give you some insight into it.

I hope you're feeling better after your cysto/hydro; rest is the best thing after one of those. I'm sorry to hear you've been diagnosed with IC, but at least you now have a definite diagnosis and can move on to finding treatments that work for you! :)

[traceann]

HI Butterfly! I just wanted to add my welcome to the mix! Looks like you have gotten great advice already, so I will leave it at that, and once again say welcome to the gang!!! Hope to see you around the boards!! (oh almost forgot, my bladder gets a bit cranky due to hormones, pms time is usually the worst for me! ;) )

hugs!