Newly diagnosed, scared, many questions - this is long, sorry

[Steff34]

After seven years of crying in gynecologists' offices and being told that I should go see a psychologist for my imaginary pain, I finally found a doctor who would listen to me. I actually had to type up a list of symptoms and hand it to her, because I can't go to the doctor and talk about it anymore without crying - it's just been too long.

I was diagnosed with ic and vestibulitis. I'm not sure which devastated me more. I already had a good idea that I might have these things, since I've had so long to research. I didn't realize a concrete diagnosis would be so painful to hear. I guess I was just hoping for a magic antibiotic and a lecture about self-diagnosing through the internet.

I'm really, really scared, because I'm eloping with my fiance in October. I would love to be able to actually have a wedding night. We haven't had ANY kind of night for a number of months now, so not only do we have to relearn to connect physically, God willing, but also mentally and emotionally. It's exhausting to even think about.

So far, the doctor has me on cromolyn lotion for the vestibulitis and progesterone cream for the hormonal symptoms I have - like early menopause. I'm 34, and since I was 30, I've been developing symptoms of menopause, including zero libido, which I'd really, really like to get back, especially before October.

I'm not positive, but there's a chance the cromolyn is helping a little. I can't tell, because in the middle of all this, now I have regular menstrual cramps and tampons to contend with. I can use tampons. Sometimes they hurt and sometimes they don't, but never so badly that I can't use them.

Everything hurts more this week than before being diagnosed on August 31st. I'm assuming that's psychological, but who knows.

What I'm doing for myself is:

* 900 mg of calcium citrate a day, split into three servings
* Marshmallow root pill 3x a day, until my tea comes in the mail
* Calendula cream 3x a day
* Chromolyn twice a day
* 2 Prelief before I eat anything, and the powdered Prelief in the mail
* Colostrum coming in the mail. I'll take as directed.
*I quit drinking coffee and tea (and I want to cry because I don't know
how to live without my tea, and I don't like peppermint.)
* I am following the ic diet and doing my best to also eat low-oxalate. I'm
not eating anything high oxalate, but I will eat medium oxalate, because
otherwise I'd starve.
* I already drink a gallon of water a day.

I just lost 35 pounds on a diet and feel happier about the outside of myself than I have in as long as I can remember, and I don't want to live on vanilla milkshakes. Well, I DO want to live on vanilla milkshakes, but I know I can't.

Every time I think I'm strong and dealing well with this, I break down in tears. I was diagnosed with psoriasis a few years ago. I feel like every few years, a doctor is telling me I have one more incurable disease that has no good treatment and will disfigure me, hurt me, or both. I'm kind of losing it a little, I guess.

So what else should I be doing? Can I drink Roobois tea? What about the teas on this website made from roasted carob? Can I have agave nectar? What do I sweeten things with?

How do I tell if what is hurting me is ic and not just a bladder infection or something else entirely? I do have to go fairly frequently, but I HAVE been drinking a gallon of liquid a day for the last few months. It hurts when I go sometimes, and sometimes it doesn't. Sometimes it burns, and sometimes it doesn't.

How long after cleaning up my diet should I expect to feel relief?

I'm so confused, and I'm so, so glad this board is here.

Thank you,
Stefanie

[pixiemom1]

I am newly diagnosed as of a week ago so i am of zero help to you, i found it interesting you mentioned your psoriasis thing. i also have psoriasis and was feeling the exact same way you do, another incurable thing. i told myself though that at least these won't kill me! i know it is hard regardless, the emotional affects of these things. best of luck to you...sounds like you are doing great so far with your diet changes.

[Goldfinch]

Welcome, Stefanie, you will find a lot of good ideas and a lot of support here.

You don't say that any of your doctors is a urologist. It isn't necessary to be treated by one if your gyn or pcp are knowledgeable about IC, but it wouldn't be a bad idea to see one for another perspective. I notice that you are not taking any of the standard meds for IC, such as Elmiron, Elavil, an antihistamine (like Atarax) or a urinary tract antiseptic such as Urell, prosed, etc. Have these drugs not been suggested to you, or have you opted not to use them?

If you are ever wondering whether you have an infection instead of or on top of IC or other bladder irritation, the best thing to do is have your urine cultured. You don't want to take antibiotics unless you know you have a bacterial infection. One of the first indications of IC, of course, is persistent symptoms that feel like a bladder infection but that test negative.

If you aren't exaggerating about drinking a gallon of water a day, that may a lot for any bladder. 8-10 glasses a day is more like a half gallon, and is most likely enough. When I first developed symptoms of IC I experimented with drinking various quantities of water, and discovered that there is indeed such a thing as too much.

Many here tolerate rooibos tea, so it's worth a try. Roasted carob might be fine too. I wouldn't touch artificial sweeteners, but plain sugar seems to be no problem. I don't see why Agave syrup would be bad, but I really don't know.

Hope you feel better soon!

[purpletomorrow]

You poor thing. Most of us here have been where you are, and the good news is that it DOES get better.

I'd consider consulting an IC specialist. You can find one here:

http://www.ichelp.org/LivingwithIC/M...5/Default.aspx

and here:

http://www.ic-network.com/md/#search

I'd also get on the IC diet and stay on it, to stop irritating your bladder. You can find it here:

http://www.ic-network.com/diet/

I drink teeccino with milk all day and apparently it alkalinizes the bladder, which is a good thing.

I take Prelief with every meal. It de-acidifies urine to help it stop burning your bladder. Good for you for already taking it.

I also take CystoProtek, which seems to work to coat the bladder, to lessen the irritation, and to let it heal itself. You can find that here:

http://www.icnsales.com/CYSTOPROTEK-p-1-c-100.html

I also take Desert Harvest Aloe Vera, which works with the CystoProtek to sooth and coat the bladder and speed healing. You can also find that in the ICN store.


The CystoProtek and the Desert Harvest Aloe Vera seem to work better together than either one does for me separately.

My IC specialist says they are both wonderful supplements for an IC bladder.

These supplements, combined with the IC diet, have given me marvelous relief and I recommend them highly.

I avoid swimming pools; the chorine in them makes my bladder scream in pain.

Also, vaginal estrogen is important. When my OBGYN gave me Vagifem vaginal estrogen tablets, it helped my IC a lot.

The whole female uro-genital tract depends on estrogen to function well. Loss of estrogen causes PH changes in the vagina, thinning the walls and increasing the odds of a UTI.

So consider asking your doctor for Estrace or Vagifem, or some other vaginal estrogen; it may well contribute to a solution.

I use Wild Rose Emu Oil on the vulva to deal with vulvar pain and inflammation. It's WONDERFUL. No odor; lovely feel to it, nothing that irritates that sensitive area. It makes things much less tender and angry.

You've found a wonderful support group here, the cumulative knowledge is tremendous. Please keep us posted on how you are doing and your progress.

Kind regards,

Laura

[purpletomorrow]

Forgot to add--

1. NO TEA. I can't do ANY TEA of any kind without problems. Try Teeccino for a hot coffee-like drink. It's an acquired taste and it's good and it doesn't make me spasm and hurt like tea.

2. My IC doctor just put me on Hydroxyzine and Elmiron, two well known drugs for IC. Maybe you can talk to your urologist or uro-gynecologist about a prescription for these?

The Hydroxyzine is an anti histamine. Specialists think that this is in part a mast cell disorder, sort of like a histamine attack on the bladder, from what I understand. So the anti histamine controls that.

Elmiron is a polysaccharide that coats the bladder, which stops the urine from irritating it, and lets it heal itself, if I"m understanding it correctly.

Drawbacks are that it's expensive, doesn't always work, and takes a lot of time to work. Many consider it the first line of defense for IC.

I'm sure others will chime in with their thoughts/corrections.

Cheers,

Laura

[Steff34]

Thank you SO much for your replies. I'm still feeling really overwhelmed by everything, which is why it's taken me so long to respond, but I'm trying to educate myself little by little. I find myself wanting to ask my questions to all of you more than to my own doctor! And I'm sorry, but I do have a couple more, if you could be kind enough to help me with them.

Goldfinch, none of the medications you mentioned were suggested to me. I did call today and ask for a couple, but I'm not sure what to do now because of the cost and the side effects.

The Cromolyn I'm taking is, essentially, an antihistamine, I believe. It is supposed to inhibit the mast cells from producing histamines, if I'm not mistaken. My doctor feels that the vulvar vestibulitis has to do with mast cells. I'm already ready to just have surgery, to be honest. After all these years of pain, I'm in no mood to treat ANYTHING conservatively.

Laura, I definitely will give Teecino another shot. I tried it once when I was seeing a naturopath, but I really didn't like it. I guess now is the time to try again.

Also, I have just ordered three months' worth of Cystoprotek. I'm hoping that helps in place of the Elmiron. Do you know how long that usually takes to start working? I know they say to give it three months, but is there a chance it might work sooner?

I also have the Prelief tablets in my purse and the shaker of powdered Prelief at home.

I'll try to drink less than my gallon of water a day. I just lost 35 pounds, and that was part of the diet program.

I called my doctor and asked her to prescribe me Elmiron and Estrace, and she did. She left me a voice mail and said that one would not work without the other. BUT when I got to the pharmacy, my portion of the Elmiron after the insurance company paid its portion was $288. Oh my God.

So...I bought the Estrace. Is it true one won't work without the other? Because I thought I read on this forum that a lot of women were finding a great deal of relief with some kind of vaginal estrogen supplementation. Even if maybe the ic symptoms aren't affected, couldn't it help my other symptoms?

Also, I read that Elmiron makes a lot of people's hair fall out. I want to feel better, but I also don't want to be bald in my wedding pictures. I'm kind of torn here. The pharmacist said to talk with my doctor, and if she says okay, I can buy half the prescription two weeks before I leave to get married, and that way I may have SOME relief but not a bunch of hair loss.

I really hope I can make this go away without the Elmiron, for sure. I'm praying the CystoProtek does the job for me.

One last question, I'm sorry. The prescription dosage I was given for the Estrace is 1 gm three times per week. Does that sound good to you?

Essentially, aside from low oxalates and the ic diet every day (which may be helping, but I can't quite tell yet), I am taking:

Calcium Citrate
Fish oil
Folic acid
Cromolyn ointment
Marshmallow root pills (until my tea gets here in the mail)
Colostrum (once it arrives in the mail)
CystoProtek (once it arrives in the mail)
Prelief before every meal
Estrace (just starting tonight.)

Thank you all for listening to this again. I could fill pages up telling you how much I appreciate having people listen to me, believe me, and answer my questions honestly and intelligently.

Stefanie

[purpletomorrow]

HI Steph,

Brave heart, this is going to get better.

I've been on the CystoProtek since March of this year and I am MUCH better. The improvement was gradual and impressive. I love the CystoProtek. My IC specialist loves it too. I'm so glad you're getting on it.

I recommend you follow the directions when it comes; store it in the freezer. Take one the first day, with a meal. I think it's two the second day, three the third day, something like that. They want you to acclimate to it gradually so it doesn't cause gastric distress. Freezing it makes it release more slowly in your gut. I never had any gastric distress from it at all.

I buy it from Amazon, they ship it every month, and when you have a 'subscription' like that, you get free freight. Every little bit helps.

Elmiron made me itchy so I didn't take it when I got prescribed it in March 2009. I took the over the counter CystoProtek instead and crossed my fingers. It was effective beyond my hopes. It's a bargain, even as expensive as it is, because it gives me a lot of my life back, and I have every hope I will continue to improve.

Last month I found a new, better, IC dr, and he said to combine the Elmiron with an anti histamine, that that should stop the itchies, and so I started the Elmiron. But it has not had time to work yet, my improvement is due to the Cystoprotek.

Please consider adding the Desert Harvest Freeze DRied Aloe Vera to the mix, my IC dr swears by it and it's helped me a lot as well.

https://www.desertharvest.com/shop/index.php?crn=205&rn=385&action=show_detail

I suspect my Hydroxyzine is like your Cromolyn in that they both stop or lessen the histamine attacks on the bladder. I'm glad you're taking that.

The Teeccino is an acquired taste, like bourbon or mustard. I didn't like it at first, but was desperate for a hot drink, and all tea and coffee bothered my bladder. I was determined to quit pissing it off so it could have a chance to heal. It sounds silly but I thought I would croak without my tea so I gave the teeccino a chance and now, with milk, I love it. I hope you come to like it too. It seems to actually help my bladder.

Congratulations on your weight loss, I am so jealous! I have long thought that the more weight I could get off my poor bladder, the better off it would be. How did you do that?

I had horrible psoriasis for many years. It improved immensely, to the point of never bothering me any more, with two changes; California baby calendula cream, which you can find here:

http://www.californiababy.com/calendula-cream-2-oz.html

and red light treatment. You can google it and find out how red light works; apparently nobody's really sure, but it speeds wound healing and is thought to increase mitochondrial action in the cell. I bought my unit here and would not consider being without it, I used to use it an hour a day for about a year, and now use it about 5 minutes a day to keep it in remission.

http://www.theledman.net/order.html

I don't know what the correct Estrace dose is but I suspect you will want to start big and taper down to a maintenance dose. Recommend you do a Search for Estrace here on the forum and read the posts about it, many folks here use it and know more about it than I do. Go to Search at the top right and go from there. I hope the Estrace will help your tender vulvar area. Emu Oil was very helpful to me with vulvar misery, I get it here

http://www.wildroseemu.com/store/Results.asp?category=5

Hope this helps.

This will get better! Really it will! You're on the right road, following the diet, taking anti histamines, stopping tea and coffee, getting CystoProtek.

[Holly G.]

Wow, Laura, there is some good information here!

I'm sure lot's of people will benefit : )

[Steff34]

Laura,

I can't thank you enough. I appreciate all the advice.

I'm totally giving the Teecino another shot tomorrow. I think I'm going to really crack down on the ic diet. I've been doing great, but this week was SO bad with work and stress that I went out to dinner tonight and had not one but TWO Negronis. My soul felt better, but I'm already feeling it. I took a whole bunch of Prelief before, too, or I can only imagine how bad I'd be.

So tomorrow is the diet crackdown. I'll talk with my doctor about increasing the estrogen when I see her on October 5th. I leave to go on my wedding/honeymoon trip on the 17th of October, so worst case scenario, maybe we I can take an emergency Elmiron dose before I go.

I know this isn't a psoriasis forum, but would you please tell me which red light unit you got for your psoriasis? The website was a little confusing, and I'm not sure if you mean use all red light or red/infrared. Apparently there's a difference. Please let me know when you can. I totally want to buy one right away.

Thank you so much!

I'll keep ya'll posted on how I do. I really hope this estrogen works, though. Maybe if the pain gets better, my sex drive will come back. My libido has been at zero for years now. I'm still young, and I'm just getting married. I want it BACK! :rant:

Stefanie :)

[purpletomorrow]

Oh sorry, of course you need to know that! I got the 660 nm (Red), NOT the infrared. The infrared requires that you wear goggles or you damage your eyes and I didn't want to do that. I got one of the huge, expensive panel arrays. Used it every night before bed during the news. Keep me posted!

[Crella]

Wow, Laura, there is some good information here!

I'm sure lot's of people will benefit : )
I think I will. Great info.

[Mrs. Peel]

Just adding my good wishes to those of the others.

I expect it will be an emotional roller coaster for at least a month, but maybe it will be easier since you've had some practice with the psoriasis diagnosis. Auto-immune diseases do seem to travel in packs. You'll see in the "related illnesses" section of the forum.

I've been on Elmiron since early May, and I'm pretty sure it's working now, but I only have to pay $75 a month with insurance. Apparently, only 4% of people on Elmiron lose hair. I did have one nightmare about it, but am otherwise intact. Sounds to me as though alternative methods may be better for you.

I've gotten used to Pero and Teacheeno, and even miss them when I go on trips.

My advice, NO heavy lifting, NO bicycle riding.

Sending lots of hope. It definitely does get better.