Diagnosed but still no relief in sight

[GlassGirl]

Well it's a very long story - 3 years in the making.

3 years ago found a lump on breast, had X-ray and mammogram, family Dr. said it was "relatively uniform in shape so it should be ok (supposedly cancerous cells are non-uniform shape) - but they found that my ribs were really thin. Family Dr. told me to take 1100 mg natural source calcium and 1100 mg vitamin D for Osteopsorosis.

Fast forward 11 months - in the hospital with kidney stones, passed those ones. Three months later I am in the hospital again and find out I have diverticulosis. Fast forward 3 months to July 2, 2010 another trip to the hospital with more kidney stones. From this time on, I have been in CONSTANT pain and almost daily spasms that feel like I'm being stabbed with a knife. At this time family Dr. is giving me SMALL prescriptions for Percocet while I wait to see the urologist. First Uro Dr. is a TOTAL ASSHAT ... he doesn't like, nor have any respect for women (he's a foreigner with a high disregard for women) he tells me that the catscan shows the kidney stones have passed and the "growths" are on the "outside" of the organs. When I asked what that meant he told me to "go back and see the family Dr." HUH ??? what the heck does that mean?

Family Dr. says he thinks I have more Endometriosis - wait, what??? but I had a hysterectomy in 2001 and only have 1 ovary ... how could I have that again? Ok, so now I see the OBGYN (she has been an angel)she thinks that I have IC - AND - the Endo is back but "won't do anything until I get the uro thing straightened around 'cause she doesn't want to do surgery to remove the last ovary and get into a problem when she goes in" ... so she refers me to a different Uro ... waited another 4 months to see him. Finally see him and he puts me on Elmiron 3 times a day and 50 mg Amitriptine (sp?) at night so I'm not getting up every hour. This is about all this Uro can do for me 'cause he no longer has his practise here and therefore has no hospital privileges.

Meanwhile the family Dr. cuts me off pain meds and insinuates that the pain is in my head.

Back to the OBGYN now she refers me to a specialist in Toronto (1 year waiting list) and a new Uro (fresh out of medical school) who is coming to town and is now my current Uro. He WILL NOT prescribe pain meds whatsoever and schedules a cysto. OMG ... I had no idea ... (thank God I "borrowed" a Tylenol 3 from a friend and took it before I went) cysto with no pain meds and then when he gets in there he finds some "growths" so he decides to do numerous biopsies while he is in there - STILL NO PAIN MEDS - and then apparently I was bleeding profusely and all the nurses started scrambling ... then finally the cauterization for the biopsies - I thought I was going to go thru the roof!

So the biopsies come back non-cancerous, they are scar tissue and inflamation. Now he schedules the Rimso treatments. The first one in December was horrible burning pain while trying to hold it. Then 3 days in bed in total agony. When I told the head nurse about that before the next treatment she said "she has over 1,500 patients on Rimso and NOT ONE HAS EVER COMPLAINED THAT IT CAUSED PAIN". Last Friday was my second treatment and another 3 days in bed in total agony. Now the Uro wants to do 2 more treatments 2 weeks apart.

I really don't think I can do it ... between the treatments, the pain, the spasms and no pain meds (Tylenol doesn't even touch it) ... I am about ready to

OOPS ... almost for the recent added diagnosis of "Macro Petuitary Adenoma" - have not started any treatment for this yet.

[ICNDonna]

I had DMSO treatments and while they helped my IC over the long haul, the first few instillations were extremely painful for several days and my uro did give me pain meds to take following instillations. Are they instilling lidocaine or marcaine with the DMSO? If not, I suggest requesting that they do.

Donna

[GlassGirl]

Yes, lidocain (I think) to make it easier to put the catheter in. But then when the Rimso goes in it feels like my insides are on fire.

After that it's just constant agonizing pain. I've burned all the skin down there trying to use a heating pad to get any relief I can get. Hot tubs ... but then I screw up the chemical balance in the tub.

[1caligato]

GlassGirl, you are not alone. I had one dr try to tell me that because she didn't know of anyone allergic to the medication she prescribed to me that I couldn't possibly be allergic to it. I not only had all the side effects listed on it but also the severe ones that stated they were definitely allergic reactions (tightness in the chest). I personally think it's ridiculous for a dr to assume because they haven't encountered a patient with a problem with the medication that you won't.
With the cystos - I would call around different urologists and see if any of them typically give you anesthesia before doing it. Then I would switch to one of them! I am thankful that my dr had me somewhat asleep while dealing with that procedure. Having a catheter in is painful enough. I simply am horrified to hear about what happened to you.

[Julie B]

Hi GlassGirl,

Have you tried to cut out things like caffeine and tomato products? Does that help?

[GlassGirl]

Hi GlassGirl,

Have you tried to cut out things like caffeine and tomato products? Does that help?

Definately! Oh how I miss my Pepsi and chocolate ... but yes, caffeine along with tomatoes, citrus, cranberries, nuts, Italian sausage, anything with lots of spice ... all gone. All of my favorites

I have been noticing quite a few people here take Prelief - which I never heard of before - next time I go across the border into the U.S. I am going to find it and give it a try.

1caligato - Unfortunately, there is a severe Dr. shortage here in the North so I don't really have the option of finding another Dr. - this is my 3rd Uro and there are no more here unless I travel 8 hours away.

[1caligato]

Glassgirl, I am so sorry there is a dr shortage where u are. I thought of you earlier today. I don't know how you suffered thru that torture. I know the pain I have just from catheters and you know the fun part of IC... I used to want a dr to do the cysto in the office because I didn't want anesthesia. But that changed when my level of pain went up too many notches. My dr didn't give me a choice - he does all of them under anesthesia. But I know most urologists do the cystos in the office w/out anesthesia. I thought they at least give you local anesthetic though. I don't think I could do those other 2 treatments if I had gone through everything you just said. Good luck with everything you are doing. There are no easy answers, that's for sure. You may want to explore other avenues if possible... read more and gather up more information. I don't know. Is there anyway you can ask the doctor to maybe try another medicine instead of the "Rimso" (I'm not familiar with that?) - like DMSO or Elmiron directly into the bladder?

[GlassGirl]

1caligato - Thank you for your kindness and support. ICN Donna says that Rimso is the brand name for DMSO. I'll let him do it two more times (he says it takes at least 4 treatments before seeing improvement) and if I don't see substantial improvement ... no more Rimso for me.

I think I am going to check the net and see if I can find a pain clinic somewhere in my province - if not, I'm going to start looking in the U.S.

I am so happy to have found this forum ... finally makes me realize "it's NOT all in my head" when I see soooo many of the same symptoms, reactions, etc. It is starting to give me some courage to FIGHT to get care, medications and treatments I need to live a normal life. I have become such a hermit it's not even funny anymore.

[1caligato]

Pain clinic is a great idea. Also, if you do a lot of reading, some believe that IC patients have a lot of toxicity in their systems. I say that not to encourage people to go on "detox" pills or diets because those can be dangerous for anyone, but esp. for the IC patient. And it won't be the cure, but you can start giving yourself a healing start by being strict with an IC diet and cut out anything with a lot of preservatives (like MSG, food dyes, aspartame, saccharin, etc. etc.) and maybe look and see if you can do any special baths. I just started taking a bath with baking soda yesterday and I plan to try a ginger bath because I am trying to heal from cysto/dilation that was done a month ago.
I know what you mean about this forum and realizing that so many other people go through similar things. Because I would imagine most of us don't even know one single person in our family or circle of friends who has IC. It can make life seem strange. Everyone else is living normally and they think we are, but we aren't! lol.

[GlassGirl]

Hmmm ... toxicity ... interesting. I do avoid the aspartame and saccharin - can't stand the taste left in my mouth ... but I hadn't thought of things like MSG and food dyes - I know things that are heavily processed or spicy send me over the edge. No I wouldn't do a diet type thing ... I've lost 41 pounds over the past year (6 lbs in 3 days after last Friday's DMSO treatment - not intentionally) and while I could afford to lose that weight, I can't afford to lose anymore than another / maybe 5 lbs.

As soon as I was diagnosed with IC, I immediately checked the net to see about foods ... but between diverticulosis, osteopsorosis and IC ... it sure has changed my "diet".

The head nurse at the Uro clinic suggested a tsp. of baking soda in a glass of water to reduce the acid ... but I just gag on that. Going to get some Prelief and see if that helps.

Yes, baths are good. I find our hottub helps a bit sometimes - but not after a DMSO treatment (I just screw up the chemical balance). Was thinking of trying epsom salt bath, but baking soda or ginger bath sounds good too.

Thanks for the suggestions ... I'll try almost anything at this point.

You're right, I don't personally know any other person with this disease. I have heard it is quite prevalent in our city ... but since I don't get out much anymore, the possibility of meeting anyone like that is pretty much non-existent.

Good luck with your ginger bath, I hope it makes you feel better!

[ICNDonna]

I can't take soda because of the high sodium content, but my doctor some years ago suggested Tums --- and Tums are commonly recommended for calcium too so they can be a good thing.

Donna

[GlassGirl]

Thanks Donna ... I will try absolutely anything.

[VickiB]

The head nurse at the Uro clinic suggested a tsp. of baking soda in a glass of water to reduce the acid ... but I just gag on that.

Me too. No way can I get that down! ACK! But I found that 1/2 teaspoon to a glass is do-able so I just do two glasses worth instead. Luckily I don't have sodium issues because I've found this is like a magic potion for me, -really soothes my bladder.

I got that "it's all in your head" line too. Sheesh! No you're not alone in this IC battle. FWIW most people do find treatment and self-help tricks that get them feeling much better than when first diagnosed. Odds are you will too!

Vicki

[GlassGirl]

That's a good idea Vicki ... will give that a try.

Thanks

[KatieB]

I can't remember who, but someone said they put it empty capsules and took it that way and it helped them. I have tried to drink it and put a little bit in a lot of water. It didn't really do a lot for me but I think maybe I didn't take enough. Good luck!! Throwing it up was the very first thing I thought of too!!