So scared and feel so alone, saw urologist to confirm IC on top of Endo

[Lexiebug]

I am so tired of this. So tired guys. I have had this going on since they took out my ovary two years ago. My bladder is so sore, I am on methadone and I had 11 good days and then the flare started and I am about to get my period. I saw the top uro who deals with this. She said we are actually allergic to our own urine. She put me on the Elmiron, so far so good, Lyrica (three times a day), again, no problem with any side effects and then I tried the Vistaril at bedtime ( tooooooo sedating), she said it was a new and stronger type of a neurontin. no, can't take that. So, she is going to start DMSO's next wednesday and she scheduled them out for four weeks, I am terrified as I am so spasmatic down there, beyond the pain which I got back under control, when the flare starts, I get so much deep muscular pain that radiates up the left side of my back and I throw up so badly, it stopped today. Then, I have groin pain and my bladder and vagina just won't stop moving and spasming. I hate it. It is such a creepy feeling and so sore.

So, I have to go back to the gyno who wants to do a lap. at some point. I had five endometreosis removals and I wonder if there is so much scar tissue around my ovary area and my bladder. She was very nice, the uro, she said most uro's dont want to deal with this and she wants to get people better. I am just scared of the DMSO's and wondering if I will ever get better, losing more weight with worry and fear, almost down to 92 pounds and hate it not knowing what to put in my body to bother it all.

Is anyone very depressed, feeling it will never end? I am so depressed, I feel like I am existing for my sweet children but have no husband, and feel isolated and scared and have to pull in the faith that I will beat this.

Is there hope, is the DSMO possible to help cure me? I feel I am at my end with total fear that nobody knows what it is like to live in my body, how bad the flares are, and not knowing if there will ever be an end in site.

My vagina pain and sensations, and the spasticity that goes from my bladder down, it is so annoying, it is scary.

She said the nerves get flared and the muscles get flared and they have to work to calm it all down.

Any suggestions as to what I can do to get my abdominal system calm, I am on day two of these meds, will they work? Is there a light coming, or is this it, I can't take much more.

Thank you, I am trying to be strong but nobody knows how tender my bladder feels, and how scared I am of the flares and it has been three days, and it won't calm down.

WHAT IS THIS MESS? Will they get me normal one day? Is anyone getting better. Please tell me yes.

Love,
Amy:(

[patricia1]

Amy,

I found that in the very beg of my IC problems the hardest like you. Unfor. for me it took 5 yrs to get the right diagnose. Even after having my gyno specifically tell the uro to test me for IC he would not. Then it took another 2 yrs. For me stress does induce flares along with other things like food and drinks. I pretty much have symptoms on a daily basis. Some days are better than others. But for me because my IC went so long with any diagnoses and no treatments, most treatments I have tried do not work. Living with IC is hard and it is even harder learning what bothers your bladder. But once you find a treatment plan that works for you it will get better. I know it seems there is no light at the end of the tunnel, but there will be brighter days ahead. And there are alot of ICers that do go into remission with the right treatments. Although there is no "Cure" for IC there are meds, treatments and procedure that will help your symptoms. Are you doing the IC diet, if not I suggest you start there. You can find it in the patient handbook. The meds you are on are normal for those of us with IC. You said you were on Visterial, and said you doc said it was stonger version of Neurotin, but Visterial is really a allergy med that help calm the bladder down. And Elmiron works to repair the bladder lining, but it can take anywhere from 6 mths to a year to work.

Please understand we are here for you, and the more you learn about your IC the better you will be mentally. There will still be bad days. I think why did I have to end up with a disease no one has even heard of? Why cant there be a cure? blah, blah, blah, but I have learned that I live my life, not my disease. I will not allow it to ruin my life anymore. It took me a long time to come to this conculsion, but I finally learned that I have to deal with it, because it is not going anywhere.

We will be here for you no matter what, when you need to vent or a shoulder to cry on you found the right place. This site has so many wonderful people on here that really care about you.... :grouphug:

[Babs RN]

Amy,
Patricia gave you some awesome advice. I know how overwhelming this all is in the first few months after diagnosis. You will survive this, we will all be here for you. Please don't give up, if there is one thing we ICers have, it is big kahones. We care about you and seek us out when ever the world starts closing in.

HUgs,

Barb :kissing: :welcome: :grouphug:

[Sarojini]

I hope you feel better soon, first off :grouphug:

The Lyrica you are taking is what is related to Neurontin (I take it too); the Vistaril is an antihistamine that is given to IC patients to reduce mast (allergy) cell activity in the bladder. Atarax/Vistaril is a very, very common treatment for IC -- but, it is very sedating at first. How long did you try to take it? Sometimes the sedation effect can be reduced by taking a smaller dose first and then gradually working up -- and often it stops after several weeks.

For spasms, have you tried any type of antispasmodic? For example, hyoscyamine (Levsin) is a good one, and of course there are other muscle relaxants like Valium, Klonopin, etc. There are also relaxants specific for skeletal muscles, and it sounds like you're having trouble with your pelvic floor and back -- meds like Zanaflex, Flexeril, Soma, and others might help with that.

DMSO is used often in IC treatment, and many have been helped by it. I have gone through it, and for me it was not a good experience and did not help, but there are so many others on this site that swear by it and say it is a lifesaver.

In addition, we all need help from time to time. When I was going through this at first, I saw a therapist my urologist recommended who was experienced in dealing with people in chronic pain with chronic illnesses. That was very helpful and helped me sort out my feelings about IC, pain, and what my life would be like with several different chronic illnesses. I highly recommend this; it doesn't mean you are crazy -- but it often gives you a place to "let it all out" and also a place to learn good coping techniques.

:grouphug:

[vm]

Yes, people DO get better. Not everyone, but the majority of Icers DO get better. I absolutely remember that overwhelming sense of fear that I would never, ever feel better ever in my life. That this would never end and even if it did end I didn't want to have to WAIT for it to happen. It is so normal to feel that way, but I assure you that most people do go on to find treatments that help. :kissing:

[Texas Baby]

Lexibug,
I feel for you. I had DMSO in the early stages of my diagnisis. It did help for awhile, but it took 4 weeks to see results. They were invasive and uncomfortable. But in the beginning they were worth it. Eventually they stopped working for me and I got an Interstim Implant. That was great for 2 years! I was 98 % free of symptoms. I contacted a staph infection due to an accident and the implant came out. I have had another implant put in , however it is not working and I have been in a constant flare for over 3 weeks! My Uro is trying other things on me. My point is that there are many avenues of treatment. Don't give up! you have everything to strive for! I don't get to post or chat as much as I'd like , but just knowing that there are people feeling the same way you do helps! You are not alone!
God Bless you!!
Littleva