Diagnosed today

[angieleigh]

Hi everyone. I posted almost a week ago under "self-diagnosis?"... I went to my new urologist today, and was very nervous as I've never been to one before. They seated me in his office first, before taking me to an examination room. He came in and asked how it was going. I told him, "I hurt... and I don't want to hurt anymore". He asked me to describe my symptoms, which I was very ready to do, as I had written everything down and had just experienced a horrible night last night with swelling and pain. He nodded the whole time and then asked where it hurt. When I pointed to my pelvic region he said, "Well, it sounds like you have interstitial cystitis..." and went on to explain when steps would need to be taken. I felt so blessed first of all that he listened to me and second of all that I knew I had this website for support. I felt so blessed that this doctor knew how to help. He did a urine test which came back okay and then felt my abdomen and pelvis.

They are going to call tomorrow to schedule a cyctoscopy/hydrodistension... he said as an "outpatient" procedure. Is this a painful test? He mentioned another one that he didn't like to have done as much, where they fill your bladder with a potassium substance until the pain is unbearable... I'm glad he didn't do that one.

Before I left he gave me Percocet (5mg), which I think I will get filled because of nights like last night, where I just wanted relief and to sleep... But he also gave me 50mg of Elavil and explained it was a "mild" antidepressant... have any of you taken this? If so, what exactly does it do to help the IC? He wants to start me on Elmiron after the cyctoscopy/hydro... Any advice?

My husband is very supportive and just doesn't want me to hurt anymore. He is willing to change our diets so I don't hurt. I was going to look at the cookbook that is available, as we enjoy cooking together. I felt okay after the diagnosis because I knew I had a wealth of information at my fingertips here on this website as well as the capability to communicate with other people who have this as well.

Thanks for listening and any advice on the Elavil and Elmiron would be reassuring... as well as exactly what I will experience with the cysto/hydro. Should I take a whole day off work or would I be able to go back in after?

Thanks again.
Angieleigh
:angel:

[SrMaggie]

Wow, that's incredible. How wonderful that you have a good urologist and husband. I'd say you were blessed, but you have IC. It's hard to see that as a blessing. At least you have folks working with you. Blessings

[curlycue]

Welcome you are blessed to have a good Uro and husband. Good luck

[leelee88]

:welcome:
I take Elavil at night and it really helps with my IC and helps me sleep, but I only take 25mg, you might want to ask your dr to start you out on a lower dose, 50mg would make be feel like a zombie..
Well glad you found us here and if I can help you with anything I will do my best:smile tee

[ICNDonna]

50 mg is a pretty hefty dose of elavil to start with, but you should get a really good night of sleep.

The Patient Handbook at http://www.ic-network.com/handbook has diet information which should help you get started on the diet.

Hydrodistention requires anesthesia --- so you won't feel the procedure at all. The first few times you urinate afterwards can be very painful, but most will recover fairly quickly. And it sounds like you have a doctor who is willing to order pain medications to keep you comfortable.

Sending healing thoughts,
Donna

[59 year old]

I just had the hydrodistention last week. It was a breeze. When you wake up they will give you pain meds. I had a few spasms, but that went away within 6 hours. It hurt to urinate for 24 hours, but that was the only discomfort I had. I used the heating pad when I first got home for the spasms. It was much easier than I thought it would be. You will be fine.

[dancemomof2]

I use Elavil 30 mg, I tried to up it to 40mg and just could handle it. IT does help some at night. Glad your getting good care.

[kjd]

Hi AngieLeigh

I am so pleased you have finally been diagnosed with IC! Do you feel relieved?I bet you do?
Anyway I have a cystoscopy and hydrodestention last October and you have nothing to worry about. They say it helps to relieve the symptoms in a percentage of IC sufferes and it did help me but only for about a month. i must admit I was in alot of pain and very sore afterwards but it did last long and if you are in pain anyway I am sure you are willing to try anything! :-)

As for the Elavil this is a very common drug used for IC and is very good! It can be used as an antidepressant but a small dose (10-75) is used specifically for chronic pain. It works by interfering with the pain signals in your body and relaxing the bladder which results in hopefully less pain for us.
I have also being diagnosed with PNE and vulvodyina which is sever nerve damage and the Elavil helps for that too.
i would recommend starting on a lower dose then working your way up to 50mg as its a very high dose and you will feel really sleepy.

I would also recommend changing your diet and drinking lots of clean water and avoiding soda and caffiene.

We will all be here to help you and support you so try not to worry too much!

take care and good luck
x

[mary124]

Hi:welcome: Glad you have a supportive husband (that is what is helping me- if I didn't have Joe with me though all of this I would be in big trouble!) and also a supportive doctor. Good luck on your Hydro. If you have any questions, you just need to ask.

[kerra]

hey angieleigh,
i feel like i am going through alot of the same things as you, the chronic pain and i am just feeling alot of the same things as you. i would really love to talk to you about it. you can send me a message or email me. kerradavis@hotmail.com!!
good luck with everything
Kerra

[meme]

Welcome! I'm with everyone else on the hydro. It hurts a little when you wake up, but its not too bad. I'm on Elmiron and Elavil also. I only take 25mg of the Elavil, but I'm going to see if Uro will up it to 50mg first of the year. The 50mg may make you tired. The 25mg did for the first couple of weeks, but now its okay. I was put on the Elavil for anxiety and depression, but I have found the it really does help with the physical pain, and I think that more than anything has made me feel better. The Elmiron takes a while to kick in. I started seeing results after about 4mos. It does help though. I haven't experienced any bad side effects from it. Changing your diet will help a lot too. I didn't realize how some of the everyday things I ate and drank were making me feel so bad until I quit them, now I really watch it and I feel good most days. Glad you have a uro who's good to you and listens to you. They're hard to find. I had to see three before finding one who would listen to me. It really makes a difference. Good luck, we're all here for you!

[Lisa_S]

I started with 25mg of Elavil, but then I went up to 50mg. I've been on 50mg for many months now, and it helps quite a bit. When I first started it, I had a couple of days where I felt kinda groggy, but that went away pretty quick. I didn't notice any groggy feelings when I went from 25mg to 50 mg.

[kerra]

my question to the people responding to this post....
did you guys gain weight on this medication? i'm doing some research on it and it says that as one of the side effects. what is your experience?

[Lisa_S]

I gained a little weight at first (about 5 pounds). I noticed my hunger levels were higher, and I basically just had more of an appetite. However, it wasn't difficult for me to lose the weight I had gained plus some. For me it is just a matter of watching what I eat and not eating more than my body needs. I try to snack on healthy foods if I get hungry at a time other than a regular meal time.

[Briza]

I haven't gained any weight. I usually take 10 mg, works great for frequency for me and sleeping and some for my other symptoms. Sometimes up the dose to 20 mg when I'm in a flare, it makes me a little tired when I do that. Best to take it at dinnertime, rather than right before bed, to help prevent the morning groggies. Starting at 50 mg would knock me out. I take it as needed now, since it starts working within a couple of days for me.
Overall, it's been very helpful for me. Best wishes.:)

[kjd]

Hi Karra

I wouldnt worry too much about gaining weight as I only did a tiny bit. All it does is increases your apetite so just be more conscious about how much you are eating and you wont put any on. I just crave more sugar but if you drink lots of water that takes away the edge and this settles down once you have being on the medication for a while

take care.

[angieleigh]

Thanks to everyone who has welcomed me aboard! I found out today that my cystoscopy/ hyro will be this Monday... just a few days away. It happened a little quicker than I would have liked- I needed to work that day, but my supervisor was very supportive and understood I needed to have this done. It turns out one of the girls in my grad class goes to the same doctor as I do and she actually had the same tests this past week (seperately). She was able to explain them to me, but she said she was awake for both? Is this common? I wonder why it sounds like I am going to be going under... anyone have any ideas?

Thanks so much about sharing your experiences with Elavil and Emiron. I spoke with my primary care physician the other day, just to keep him in the loop. He is actually going to read up on Elmiron so he can guide me as well. Thanks again and take care everyone!

~*~*Angieleigh~*~*

[lynnemm7]

i was awake when i had my test done... except i had the one where they fill your bladder with basically salt water. was not fun.
sounds like that's not the one you're having though. there wasn't any pain with any part except the 2nd solution they put in there. just discomfort. it was a weird sensation but tolerable for sure. i wouldn't worry.

[jen1969]

The test is a breeze, they put you out for it, but warning when you go to the bathroom after, it feels like razor blades coming out, a good hot soaking in the bath tub helps. The test also stretches the bladder and that feels good to be able to hold it awhile, the emeron has some pretty wicked side affects i've heard, mt sister wont try it because its #1 side effect is hair loss. But everyone is different, you may be fine with it. Good luck and prayers with you!

[heather54]

I had my cystoscopy/hydrodistension two weeks ago. I also had an endometrial ablation at the same time. I have to admit, I had no pain at all from the cystoscopy; slight discomfort from the ablation. They gave me suppostitories (tylenol and an anti-inflammatory) while I was asleep, and toradol as I was waking up. I felt like I had to pee, and when they finally let me up to the bathroom; about an hour and a half later, I was able to go with no problem. No burning; no bleeding! I was so relieved. I was diagnosed with grade 3 out of 4 interstitial cystitis.

[curlycue]

You go girls. Good Luck on all the test and meds.

[serene2u]

Doing Fairly well today---
Serene2u