Newly diagnosed - questions about treatment

[Shannon D]

I have been having blood in my urine, burning when I pee, back and pelvic pain off and on for over a year. I have been to several ob/gyns and uros. Finally, on Dec 5th I did a cysto/hydro to check for IC. I was a little disapointed (sort of) that it showed no real lesions. I figured that meant all of this was in my head. However, my uro said we can not discount the continual blood in my urine and symptoms. Mostly, my symptoms are pain. Pain with peeing, pain in my pelvic region, and pain in my back and abdomen. It basically feels like I have heartburn below my waist much of the time. And intercourse can be painful. For a while, this waxed and wained. Lately, it's been more often than not. My dr gave me a script for elmiron, elavil and an anithistamine. The elmiron would have costs me $243. Right now, I am opting to try cystopyrex. I took the elavil last night and today, I feel like a zombie- just off. I don't know if this is worse than the bladder pain. For those of you on it, how long does this last? I have tried the diet. I am the kind of person who hesitates to be on meds, but it didn't work and the pain is getting worse and more constant. I have not yet taken the anti histamine b/c I am afraid of how I would feel on that in addition to the elavil. My question to you guys is what do you think helps you the most with pain -- as that is my main symptom. I really don't have urgency, and I have frequency only at night. I have to pee about 5 times before I can finally sleep and always get up once more to pee. I do have the burning with pee, but not all the classic IC symptoms- mostly the burning pelvic pain. Any unput would be so much appreciated. How soon do you see results. I am starting yoga too - any one know of yoga poses specific for pelvic floor? Thanks!

[sami4]

Shannon:
You are so welcome here and everyone is so supportive, and you will know them all well pretty soon as you get used to their call names.
Could you tell me what the cysto found? I also have trace blood in urine on a Bayer dipstick which after numerous tests for stones ect, the urologist just said,"Some people pass trace blood and it means nothing." I also have a lot of urethral symptoms with stinging and burning. I developed my own theory that when the urethra gets irritated it causes inflammation and then some red cells slough off the lining. My uro at the time said that could be the case, he didnt know for sure either. Also I am menopausal and when I had my yearly physical the internal medicine man said a huge number of menopausal women have trace blood in urine due to low estrogen and lubrication in the lining of the UT. Sounds like IC huh?
Sammie

[SharonA]

:welcome: Shannon...

Elavil is my #1 med for IC. Before starting it, I had horrible pain. It began to help me with the pain the very next day.

As far as feeling like a zombie, I think that is pretty common. I did not have that, but my doctor started me out with 10mg to be taken in the early evening and slowly increased me up to the 25mg. I have been taking it for over 4 years, now and I am able to go about my daily life pretty much like I did before my symptoms began. I do not feel perfect, but so much better than in the beginning. :)

[Shannon D]

The uro basically said that the cysto was unremarkable, that there was a little inflamation, but considering my symptoms, he would have thought he would see more. Of course, I got upset and thought this is all in my head - but he said that doesn't mean I don't have IC. He said if the medicines help me in 6 mo., I will know it is IC, if not then probably laproscopic surgery will be needed to rule out ob/gyn issues. I've done all the ob/gyn and kidney ultrasounds and they've shown nothing. My uro said he feels "pretty strongly your symptoms are urethral in nature," but that's about all he could offer. That's funny you should mention low estrogen. I went off bcp this summer thinking that may help my symptoms and I started having major shedding and a very oily face and an endo I went to said I probably unleashed low estrogen on my body and also higher testosterone. So, I went back on the pill- I did not like what happened off. It made my IC (or whatever this is) worse. Because of the hair shedding (which is getting better but still not great) I am very reluctant to introduce both elmiron and elavil as I've read both can cause hairloss. I will say I do have reduced symptoms today. Since I've not started elmiron, I can only assume it's a fluke or the elavil, but my gosh, it makes me feel like my skin is crawling - just out of it and irritable and I only took 10mg. I pray this will cease over time. Thanks every one for your support. I hope these meds help me. This has really taken a huge toll on my life and my marriage. My husband is understanding - but I am not myself. Sex is painful and he's always afraid to hurt me so it's just not the same.

[Debgail]

:welcome: Shannon,

I too am post menopausal and I know that estrogen does play a role in thining the vaginal /urethral tissues and possibly trace blood is coming from there.

Elavil: I swear by it! :bow: Yes it does give you the "hit by a truck" feeling for awhile. :headbang: If you give it a fair shake like a couple weeks hopefully your feeling will subside when your body gets used to it. It rREALLY cuts my pain down by diffusing the pain signal from my brain to bladder. As for hair loss from elavil I have never heard of it and I take 25- 50 mg....a big dose. Elmiron CAN cause hairloss, but it seems only a small amt. of people complain about that. It seems too that most of us that have success with it wouldn't stop taking it unless the hairloss was bad...or someother side effect like stomach intolerances. I also think atarax is an awesome drug I wont be without. It keeps my vag/urethral/bladder swelling down...hopefully helping pain. I still take pain pills tho too.

The other thing I wanted to tell you is you have to go 5 times before bed you prob have urgency too or you wouldnt feel you had to go that often. :toilet: ALSO, The pelvic pain you describe sounds like your bladder....I have pain above the pubic bone in my bladder 24/7 ....except when I put lidocaine in my instil :) . I think it is hard to always know where our pain is coming from when it is coming from our bladders when you are new at ic.

I reallly hope you find a protocol of meds and treatment that help you....and dont forget the IC DIET!!!!! Its a good starting poit to know what really bothers your bladder. :bunny:

If I can help in anyway feel free to ask!
Hugs, Debbie

[Debgail]

P.S. The sex thing : I know that it can be very difficult to be in the mood when you think it is going to cause you pain. Here are a few suggestions myself and others offered me
-Take a pain pill / or pyridium/ or anti spasmodic before sex
- Lube Lube Lube!! Those tender urethral tissues are right by the vagina and can get really irritated it dry.
- Take a warm bath before or after whatever helps.
-Positions are crucial...with the bladder sitting on top of the vagina sometimes it helps to avoid positions that rub too much up there.
- Try to relax and not tense up too much ...affecting your pelvic floor muscles.
- Be honest with your partner if youre just not feeling up too it..cuddling and attention are often what each needs.
- Sometimes I just take a pain pill, have wild sex lol and feel it later just to feel normal ...not letting ic get me. . sometimes feels better than the extra pain it caused.
Hope this helps!
Hugs, Debbie

[sami4]

I just wanted to mention that not all BC pills are the same; some are higher estrogen, some higher progeterone. The ones that most docs think irritate the bladder the least are the higher estrogen pills.
If you want to really know your hormone stuff get Dr. Elizabeth Vlietts book called, Screaming to be Heard. She has a huge chapter on IC and hormones.
One of her main points is that if your serum estrogen level is below 100 you dont have enough estrogen to keep the bladder lubricated.
I had such terrible vulva and UT symptoms on the progesterone phase of my cycle that I finally had a MIrena medicated IUD put in. This IUD only gives off a tiny, tiny amount of progestin directly into the uterine lining. I had several serum tests to prove this to myself and they came back .05.
This device is used for birth control, post menopausal hormone replacement, and heavy bleeding issues such as fibroids.
I digress from the point of the post which was just that bladders can be very estrogen sensitive.
Hugs,
Sammie

[sami4]

I forgot to say that the Mirena significantly lightens the flow and stops the period in about 85% of users after 7-10 months. Thats why it is used for bleeding problems also. If you want to get PG, then you remove it. Mine is for bleeding and progesterone issues.
Sammie (again)

[Shannon D]

Thanks guys. Believe it or not, I am not menopausal. I am 37, so I could totally be peri. I did switch to a higher estrogen pill - desogen. I was on demulen but it had started to cause breakthrough bleeding and so my gyn said that could indicate I need more estrogen. I have an appt Feb. 2 and I am going to talk to her about maybe going 4 mo and then having a period as I do have slight anemia and I want to keep my estrogen up and not stop every mo. I do not feel as bad today on the elavil, so hopefully that will continue to improve. Only taking 10mg at bedtime. I have just read about the diet again and I was wondering what you guys eat for breakfast. Looking at the list, I can come up with something for dinner but lunch and breakfast look to be a challenge. I have two small kids and so I mostly eat cereal (usually total rasin brain b/c I have a problem with constipation which seems to make it worse. BUt it looks as if the diet frowns on cereals. For lunch I usually have a turkey sandwich. again, what kind of bread would be ok? What do you guys do for snacks. Thanks a bunch. At least now I am feeling I am on the right track!

[ICNDonna]

One thing you might talk to your doctor about is starting on an even lower dose of elavil --- I believe it comes in 5mg and gradually work up to the 10. It could also be that your body doesn't like it. I know mine didn't and I was very disappointed.

I do think it's a good idea to start medications one at a time so if you do have a negative reaction, you will know exactly what caused it.

Diet effects nearly all of us so I do encourage you to give it another try.

Sending healing thoughts,
Donna