View Full Version : Newbie W/ Ic :( Any Help Or Suggestions??
08-17-2004, 08:57 AM
Hi, my name is Jackie I am 21 years old and have just been diagnosed w/ IC but been in pain for probably 4 years atleast. It's been a very big toll on my life - phsically, emotionally.....sexually :( you name it! I am sure you all know!
This site actually made me feel human to see that lots of people experience what I do almost on a daily basis. I am still trying to find a solution. I hope the Elmiron works for me though....and diet change.
Let's start w/ my surgeries this year. I had an ovarian cysectomy in March to remove a grapefruit sized tumor cyst on my right ovary (CYST WAS ALSO PUSHING ON MY VERY SENSITIVE BLADDER). And recently in July I had a laparoscopy to remove endometriosis on my BLADDER and also pop another cyst....and try to resolve the pelvic pain and possibly diagnose something LIKE ENDOMETRIOSIS. Gee doesn't everything love invading my bladder???? Kinda not nice for me :(
My gyno could not find my main source of pain at first - it was burning, urgency, frequency, pain while having sex. ....or doing any PHYSICAL ACTIVITY......but it also hurt to sit, so i guess it didn't have to be physical! lol
It felt like i had the worst urinary tract infection GOD coulda gave me and it just never went away. But no one could find the source. This pain literally drove me to think I am crazy. just because no dr. could find any infection in my urine i was suppose to be oK??? Alright - so off to the next dr. I went to a urologist who did a hydrodestention, biospy and the whole nine yards.....he said my bladder looked fine. so ok.....was i suppose to be imagining this AGAIN? I don't think any of this pain was in my head. It was SO REAL...He presribed Pryidium for pain, and ditropan xl 15 mg (only dose that would help frequency). Although he did say i have a small bladder that only holds a cup of water...aren't i luckY?
Ok so after these meds. stopped working i went to see another gyno. just to get a second opinion and make sure it wasn't my uterus or somethign else causing pain. in her exam the main pain came when she touched my bladder! - she did the laparoscopy and found endometriosis but she didn't think that was the source of my pain because it was very small. She just recently prescribed Elmiron (started taking 8/12/04 and I am suppose to take 3 a day.) I have changed my diet drastically too...I mean I am doing every possible thing to try and make me feel normal again (if that is ever possible).
Does anyone have any positive experiences w/ Elmiron and know of any good natural remedies for a good nights sleep? Anyone diagnosed w/ endometriosis & IC? Can endometriosis cause IC????
I know Elmiron can take months or even years to fully work....but it's been a journey for me and I hope and pray it helps me. I am willing to try anything. Anyone got any good recipes of their own too? I checked out the IC network cookbook.......got some stuff from there already. I am off to grab some books from the library this wk too.
Well i just wanted to introduce myself.........all help would be appreciated. Thanks
08-17-2004, 09:25 AM
Hi Jackie and welcome,
Sounds like you been through alot. Here is a link to the handbook it has alot of helpful information http://www.ic-network.com/handbook/.
08-17-2004, 09:27 AM
:welcome: to the IC Network. It sounds like you have done your homework and are learning about IC --- that's the first step towards feeling better. Diet can be extremely important so I'm glad you have already started an IC diet.
Since Elmiron can take months to be effective, you may want to talk to your doctor about trying some other treatment options in the meantime.
Sending warm welcoming hugs,
08-17-2004, 10:04 AM
Just wanted to add my :welcome: to the others here... I'm glad you found us. I'm sorry you've been diagnosed with IC, among other things, but I'm glad you are out here learning all you can about your condition. I think the Patient Handbook is a good place to start if you haven't read it already. Also, Dr. Robert Moldwin's book, The Interstitial Cystitis Survival Guide, is excellent and definitely worth reading. You can get it at http://www.ic-network.com/shop or from places like Amazon.com.
As for Elmiron, I've been on it for almost 6 months now and think it helps. I hope it helps you too! But Donna's right, sometimes it can take 6-12 months to really kick in, so it would be worth having a chat with your doctor about what options you have in the meantime. :)
08-17-2004, 12:23 PM
:hi: and :welcome: to the ICN family if there is anything we can do for you please let us know.
sending you hugs and prayers
I have been on Elmiron for 3 years along with some other meds. It has absolutely given me my life back. It doesn't work like that for everyone, but there are many of us out here to whom it has been a godsend. I hope it helps you, too. :)
08-17-2004, 05:01 PM
:welcome::welcome::welcome: Welcome to the boards!!!!
There does seem to be a connection between endometriosis and IC...many doctors have studies and looked into this. If you do a google search from the main page http://www.ic-network.com/ you can find more info on that. I have endometriosis.
My favorite natural remedie for the moment for a good nights sleep includes cat nip.....it helps pain .....mentrual symptoms and DEFINATLY HELPS ME SLEEP! Elmiron started helping me at about the fourth month and made a huge difference I ended up discovering that endo was causing some of the pain....something I never noticed until IC pain went down. Something with endo is what it looks like is not necessarly connected to how much it hurts us. (I am a good example of that!!)
If I can help you anymore please feel free to contact me.
Sending you lots of love,:kiss::kiss:
08-18-2004, 03:58 AM
Well is Elmiron something you have to take for the rest of your life? Or does it ever make some people symptom free? Like say they took it and they just stopped cause they felt better. Anything is possible so I guess it's worth a thought :idea:
Um. another thing I know alcohol is probably one of my worst things to consume - but I was wondering has anyone had a drink or two while on Elmiron and then took Prelief to avoid the acid? Does Prelief work good w/ liquior? I mean my friend is having a bachelorette party this wkend........and I am still kinda curious as to if I should try it. I am not on any other medications except Seasonal. Occassionaly I take a Ditropan or prydium........but that is only if I really need them (haven't in awhile). I try to avoid all other pills cause I am worried they harm my bladder. I never knew Asprin & Ibuprofren can do stuff do your bladder.........
I mean I could possibly skip a dose of Elmiron this Saturday.......but not sure....
08-18-2004, 04:25 AM
:hi: :welcome: Glad you made your way here. :)
08-18-2004, 07:01 AM
Elmiron helps about 37% of people who take it. The ones it does help it seems to give them their life back. They say you have to be on it for more than 6 months to see any improvement.
As far as drinking I would call your doctor's office and ask them.
I also don't know if there have been any studies done on people stopping Elmiron after it worked for them. Interesting question but I don't think anyone knows.
08-18-2004, 09:30 AM
hello im farely new too about 3-4 months now with diag but still in limbo trying to figure everything out. Honestly diet for me was so hard because I already have to give up so much with my acid reflux that the few things i enjoyed i had to give up for my bladder too. Nothing taste as good anymore but i do think it has helped a bit. Ive been experimenting with benydrl right now i dont know if its helping my bladder but i am sleeping better i take it as a as needed basis right now but i take it at night to help me sleep. sleep was aweful in my first big flare and i never even flared until my cath. i think thats what made me flare. I think just now after three months of hell my bladders
calming down a bit im not going as much thank God that is my main sx frequency....they are ruling out endo with me right now too but only by getting on B/c pills first they dont want to do the lap until i try that first. also im going in for a urterus scraping tomorrow because my grandma just got diag with urterine cancer. take care ill write again soon at work gotta go prayers your way love hopeful
08-23-2004, 10:08 AM
Hi Jackie, I am a fellow Endo sufferer. While reading your post, I knew exactly of the pain and frustration you speak. I was just diagnosed with IC 12 days ago while I was having a total hysterectomy and bladder repair. I am 32. I had a stage 2 cystocele and had a bladder neck sling put in. It was damage from childbirth. From what I understand with the IC is that there is not clear understanding of exactly where it comes from. I understood that it seems to go along with endo and they see a high occurrance of this disease in women that also have endo. I also have Behcet's Disease which is a autoimmune disorder in the form of a rare arthritis. I've read that some believe that IC is some form of an autoimmune disorder which kinda goes along with all of my stuff. I have really been :ignore: mad about this since I thought all of my abdominal pain was from the uterus/ endo and it would be pretty much gone once past the surgery. Much to my surprise, the pain is in the bladder and it is still all there. I too would describe my symptoms as a bad infection that won't leave. Ironic enough, prior to my surgery, I requested a UA b/c I was convinced that I had a UTI. I have had 4 laps prior to this hysteretomy to treat the endo including removing my right ovary once due to an endometrioma cyst engulfing the ovary and strangling it.
I am sorry to hear of all your troubles. I am now looking for the best way to manage this disease along with all my others. I hope you can find the right balance. I had to post to you since your post sounded so much like me, you are not alone! I did want to throw in one little thought though, I noted your GYN said the endo was small so it shouldn't be causing that much pain. The size and amount of endo present is not directly related to the amount of pain you will experience. Some women have endo all over and no pain and some have small amounts that cause lots of pain. It is just a bad disease.
08-23-2004, 10:14 AM
Yeah its just been an extremely rough year for me. I am thinking about going to see a psychiatrist because it's starting to mentally tear me up.It's hard but I am dealing w/ some really rough thing in my relationship w/ my boyfriend and just people around me in general - i feel isolated and I don't think anyone understands me. Do you take any meds??? That help?
You can email me at my personal if you want email@example.com :woohoo:
08-25-2004, 05:22 PM
I acutally take lots of meds including 2 pain meds as a maintenance prescription. That is why I believe the disease hasn't kicked my booty as much since it is being held off somewhat with the meds I am taking. I haven't started anything for the bladder yet as I see a new urologist next week and will see what he recommends. My rhumetologist has me on all the other meds to treat the severe pain from my arthritis.
I so know what you mean about being bummed over the pain. It can be very depressing. I have been reading that Elivil is a med frequently used for IC. You might want to ask about that one since it is an anti-depressant and you can benefit from that emotionally also.
Elmiron is seen by most as something you will keep taking. They think it coats the bladder while you take it. Some people have posted that they stopped and their symptoms came back. Others have stopped and say they are doing fine.
Me? I plan to take it forever or until they find something better. ;) It seemed like a big deal to take it forever, but now it seems a very small price to pay for feeling normal most of the time.
09-01-2004, 09:38 AM
Hi Im new to this site. I was told that i have IC 2 years ago. I can totally relate to your situation. It sound alot like my life! My doctor put me on Urell for the spasms Urgency and Frequency, It worked wonders! I have been on elmiron for 1 and a half years and it works wonders I no longer have trace of blood in my urine! and am no anemic(dont know if that is correct spelling) Whe i travel and my schedual gets messed up and i forget to take my elmiron I can tell the differance almost emdiatley.
so just hang in there and remember its not just in your head! Good luck!
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