View Full Version : Positive news
06-12-2008, 04:54 AM
Hi everyone. I realized I am a little late in posting this but I need to post my progress. Back in September, I was urinating every 15 to 30 minutes all day, I was up every few hours at night and I was in pain all the time. Since then I have had a hysterectomy but that was for abnormal bleeding. I have to say the Elavil, Atarax, and Elmiron have worked wonders on me so far. Also neurontin. I never was able to even take a nap without the urge to urinate, seemed like everytime I would lay down, I had to go. I used to have nerve issues where my abdomen would get hot and upper legs, I have not had that feeling since I went on these meds. I can hold my urine much longer then I ever could as long as I have had IC. Now from going every 30 minutes to every hour or 2 is a big improvement for me. I have to watch my diet to, as long as I steer clear from the bad foods and drinks I do really well. The positive things for me right now are I have less spasms, less bladder pain and less frequency on these meds, compared to how I was before. I do flare sometimes, stress can make my symptoms so much worse, but I have came a LONG way since September to now. I thought it was important for me to post this. I went from being up 4 to 5 times a night to waking up once at night. That is a huge difference. I also have not had any vulvodynia issues at all since I started these meds. Not one. :woohoo::dance: So that actually has been one of my BEST improvements. I for years felt like I had a yeast infection, I had stinging pain, throbbing pain down there and I have not had those symptoms since I started my meds. Elavil took care of that and then neurontin even at a low dose took it completely away. So now compared to before is a huge difference for me. I still have alot of PFD issues and pressure issues, and I do some days urinate more but there has been a huge difference. I have alot of PT ahead of me for PFD, I think alot of my pelvic pain and back pain is because I cannot relax my pelvic muscles without feeling severe pressure, but I plan to work on that now. As I said the vulvodynia pain I used to feel every day, it hurt me to sit most days. I finally after years have relief from that. But I wanted to share my improvement since September because I have came a long way since then. :) Lisa
06-12-2008, 05:05 AM
That is such good new, Lisa. I am so happy to hear that you are feeling so much better. :woohoo:
06-12-2008, 05:09 AM
Thanks Sharon. I still have problems, but I compare myself to how I was in September, and I realize, wow, I am much better. Now once I battle the pressure feeling, and the PFD, and possibly get a hydro, that helped me before, I think I will really be on the road to feeling even better. :dance: I noticed there are a few foods I can have now so I think the elmiron is playing a part in that also. Now my fibro is a whole different story, but I am thankful for my progress with my IC since September and oh of course my vulvodynia!! :)
06-12-2008, 05:31 AM
This is great to hear Lisa! I am so glad for you!!
06-12-2008, 06:17 AM
Great news- hope you continue to do this good.
06-12-2008, 07:26 AM
Lisa, I have learned with my journey with IC and the other things that come with it, that any kind of break from any of it is a great blessing!!! I am very happy for you..
06-12-2008, 08:06 AM
Thank you all. Ronda thats how I feel, if I can go from urinating 4 times an hour to once an hour, to me thats a great improvement. So I contribute this really to my meds and my diet. As soon as I eat something on that bad list, I pay the price. I got brave and tried some juice, lol, well it burned when I urinated for about 4 times after so I can't have juice, lol I can now have half a pear, where I couldn't before. So improvements little by little but thats enough for me. I have really been trying to relax and not be as stressed with my dad because that aggravates my symptoms bad! Its easier said then done but what I do when I start to get upset, I will start doing something, or watch a movie, or get on the computer, things to keep me not so focused on that 24-7. It does help.
06-12-2008, 08:09 AM
I'm with Ronda on that one. I never feel as good as I once did before IC decided to move in and and set up housekeeping in my bladder, but I am grateful for every day I have that it is not like it was in the beginning. So full speed ahead... :)
06-12-2008, 08:55 AM
That is wonderful news!:woohoo: Bet getting up once at night to pee is a whole lot better then 4-5. Wonder if :toilet: is missing you? I can remember when I only got up once to pee and then when I ddin't have to get up at all. Maybe soon you won't have to go potty at night either. Are you going to have a "Potty party?" "IT's my potty and I'll pee if I want to. Pee if I want to, peeif I want. You would pee too if it happened to you". Sorry, it just happened. So glad for ya. :woohoo: :)
06-12-2008, 09:19 AM
Mary, :biglaugh::biglaugh: That was so cute and funny. :)
06-12-2008, 09:35 AM
Mary- that is too funny.
06-12-2008, 09:55 AM
Thanks for sharing your success story...I was thinking when I read it how good it is to let others know that there may be good days ahead...sometimes the improvement comes bit by bit and we don't really realize how much better we feel than before. I'm am so glad your meds have worked for you...I have had success with mine, too, as well as diet, and lowering the stress! Anyway, I am glad you are doing better and hope that the good times continue! :)
06-13-2008, 12:42 AM
That is awesome news Lisa. I was just thinking of you the otehr da y and was going to PM you and ask about your progress. Thanks for the update! I actually met another lady with IC just by coincidence. Her husband is my son's T-Ball coach. We were discussing how our bodies seem to be falling apart and it turns out that we both have Hashimoto's and IC. I thought it was really weird to meet someone by chance that has the same diagnoses. Anyway, I now gave her food for th ought and hope that she won't always feel like she has to pee every 10 minutes. Anyway, good luck with the PT. I am positive that it made a huge difference for me. I have "bad" days sometimes but that might just mean that I am going 20 times instead of 10. Many days I can go for 3 or more hours without a potty break. That is a long way from where I was last June when I was going every 10-20 minutes. So, there really is hope when you look at the small accomplishments. I remember being excited when I got down to 35 times a day in the bathroom!
06-13-2008, 01:30 AM
06-13-2008, 04:28 AM
Also I forgot to mention something. Ever since I was in my 20's, they would dip my urine and always find a mod to large amount of blood, I never had a urine checked that did not show blood. Well the other night, I had it checked and it only showed a trace. That is the first time for me. I have had it checked 3 times since my hysto and it showed large amounts. So I think the elmiron is working on me. They always said the blood was from my bladder. I am anxious to have a hysto and know how my bladder looks now, since being on the elmiron almost 10 months. My uro that did my last hysto, I was asking him questions about my last hydro since I know so much more now then I did then. He said I have severe IC by his report. My bladder capacity is very small. He said he used a DMSO cocktail. As soon as he said that, I knew it was different from my 1st one, I had SO much more pain after the one he did. I was wondering why it hurt so much more after. I did get some relief in the long run, but not like the first one, and the doc that did my first one I worked for him so I know he did not use DMSO but that was done in Colorado. But I didnt know about DMSO when I had my last hydro. I think he assumed I had DMSO the first time. I assumed he was doing the same cocktail as I had the first time. I didnt know then what I know now or I would have asked him to do the exact same thing because I got much more long term relief from the first one. So now if I have one, I will make sure its not DMSO. Am I confusing anyone yet? LOL Thank you everyone. :)
06-13-2008, 12:27 PM
Also I forgot to mention something. Ever since I was in my 20's, they would dip my urine and always find a mod to large amount of blood, I never had a urine checked that did not show blood. Well the other night, I had it checked and it only showed a trace.
I was told that sometimes there will be blood in the urine when an ICer is flaring. That is the case for me. I had significant amounts of blood in my urine for a few years and only this past spring did I learn that. The last time I flared badly, I had a lot of blood in my urine along with very bad back pain. My dr sent me for a KUB to rule out a kidney stone since I had one last summer.
06-14-2008, 12:22 AM
I had alot of tests to before I was diagnosed with IC. They were all normal, until the doc did my hydro, and found the IC and ulcers. I have not once since had a urine show no blood. Now I expected large amounts after my hysto, because that was the worst bladder pain I ever experienced and I had a UTI. I have a friend who just had a hysto, she doesn't have IC. She said her bladder felt normal, she urinated right away when her foley was out, it flared her IBS though. The nurses were not used to people waking up and screaming there bladder hurt. Now my friend said her incision was the most painful. Not me, I didn't even feel that, I had that incision pump. When my gyn touched my bladder a few weeks ago, it still hurts alot to be touched. But the exam didn't flare me, she was SO gentle. So that was a first for me to.
hon, I am just seeing this now and wanted to let you know how happy I am for you.. that is so great that you have come such a long way.. you deserve this and so much more
07-02-2008, 08:54 AM
I'm so happy for you!! I've had constant pain for so long and been admitted to the hospital twice in the past month from it. Last month my Uro gave my Neurontin but only for 30 days? I didn't even pay attention to what it did as they gave me like 8 different meds. After two weeks the pain was getting so much better and then after being off the Neurontin for 2 weeks I was in the worst flare yet!! I went back to the hospital, they ran all the usual tests and found nothing extraordinary (not surprised). Last night I had the thought that perhaps the Neurontin was the key!! Perhaps that was helping and going off sent me skyrocketing into a flare!
I called my Urologist (still waiting to hear back) to ask if they could put me back on it. After reading this, I'm so excited and hopefull. This reassured that my assessment might be on target! Finally after 3 years of such pain and getting close to getting fired now from missing work!!
Thank you so much for posting!! Congrats to you!!
07-02-2008, 09:48 AM
I just saw this too and wanted to let you know how happy I am for you!! You deserve it! :)
06-20-2009, 05:48 PM
I have a question, have you gained any weight with the meds? I just started Neurontin and am a little worried after reading some posts on here by people who are active yet still gain weight. I lost 15 pounds a couple of years ago and I don't want it to come back!
06-29-2009, 04:52 AM
Hi, I took neurontin for quite some time, I can't remember exactly how long. I never had any weight gain. I didn't have problems with any weight gain on any of my meds but we are all so different.
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