Really having a rough time

[Deirdre]

I am pretty sure I have IC. I went to my gyn hoping to hear something different but she also suspects IC. I have an appt with a Uro in 2 weeks but until then, I need some perspective. My symptoms are over 2 weeks straight of urgency and a burning feeling. it started at Thanksgiving, went away and came back 2 x before this last time that hasn't stopped. Yesterday was ok and Saturday- I was almost normal- but it keeps coming back. when it is bad- I feel like I will go insane.

I have 3 kids- 7,5 and only 10 months and I just feel like i can't cope with this. I am so scared that i will feel like this forever and never have sex with my wonderful loving husband and make everyone around me miserable. I was already on a very restricted diet trying to pinpoint allergens that were affecting my baby through breastmilk and now adding this IC diet is making my life that much more complicated. I keep losing weight and I am down to a size 2.

I have suspicions that I may have a salicylate sensitivity that is exacerbating this so I am also trying to keep out high salicylate foods. I may have od'd on apple cider vinegar, tea and other foods that hurt. My head is spinning and i feel so alone.

Since I felt good Saturday, we tried some intimacy (not vaginal penetration) and I was so bad on sunday. Is my life with husband forever changed?

I know I haven't been diagnosed yet but what else could this be?

[bubbe1]

having hard time

Hi Deidre
I'm sorry you're having a hard time.
The hardest time for most people who do, or might, have IC is the time before you get the diagnosis, and the time it takes to figure out the best treatment plan for you.
I know reading the posts here can be scary, but try to keep in mind that lots of people find treatments that allow them to lead normal lives. You might not see as many posts from those folks because once people start to feel better, they tend to stop visiting and posting as much.
I understand that your diet is already restricted, but do try the IC diet, it can really help.
Try not to worry too much about the future right now,((easier said than done, I know), and keep writing to the forum.
Sending hugs,
Laurie

[VickiB]

Hi Deidre

It's hard for us to say what else this could be. Obviously you have something going on that is disrupting your life and needs attention. It's good you have a urologist appointment coming up in two weeks and hopefully that will lead you to some answers.

Your description does sound an awful lot like what I experienced. Sometimes I'd feel good and then suddenly the symptoms would hit, lasting for weeks, -sometimes months at a time. The episode would pass I'd go back to feeling good again. What a nasty, nasty roller-coaster ride that was!

Looking back, I think most of my episodes were triggered by what I had eaten or drank so I must echo Laurie's suggestion to try to incorporate the IC diet while you wait to see the doctor. It can't hurt and it may very well help!

Is my life with husband forever changed?

I know. This is a question we probably all ask when faced with these sort of symptoms. There's no way to absolutely answer it, but time will tell. IF it is IC you're dealing with, most of us do get better following diagnosis & treatment. I would say for me, IC only occasionally affects my life now, -sex life included. I am way better than I used to be!

Please don't think that how things are for you at this moment is how it will always be in your future!

Vicki

[Deirdre]

Thank you so much. I am fine doing the diet things. I am very disciplined. it is just a little complicated because I have other restrictions as well- like dairy and gluten. How long before you usually see some improvement with diet? I know everyone is different. thanks again.

[VickiB]

Yes, I can see where this would be a balancing act for you since you have these other diet concerns to deal with. Hopefully someone in a similar diet situation as you will post.

For me, it was about two to three weeks on the diet until I realized I was beginning to break my flare cycle. For months after I still had some unidentified offenders that were triggering flares but they were being eliminated one by one. I'd say it was around the 8 month mark when I could say IC was no longer having a major affect on my life. By the second year it was fairly smooth sailing.

I do want to say that there are other things besides diet that seem to trigger flares, -at least for me. I think I was probably lucky in that diet appears to be my main culprit. But it's one of those things that one doesn't know until they try it to see if it helps. With the stress triggers I've made progress, but still have work to do!

[Deirdre]

Vicki- thanks. I do feel like food has already shown itself to be a trigger so I have hope that if I continue I'll see improvement! It really helps to know it can take a while. I was feeling like I should have seen a difference already. Thanks.

[bob04951]

Hey De, you are certainly in the right place for information. Some of the stories are scarey, but there are just as many that are positive. The diet is so very important, and there are lots of good recipes and ideas for substitutes of things you should not eat/drink. Hopefully the diet will help you and sounds like your midwife is with the program, which is great. Good luck to you and let everyone know how you make out. Jill, wife of Bob

[Deirdre]

I am losing it today. last night out of nowhere- I felt so much burning and urgency. I feel like I won't have a life anymore and I have 3 children!!!!!!!! Please tell me somehting hopeful!!!!!

[VickiB]

I'm so sorry to read this, Deidre. Looking back, is there anything different that might have caused this sudden flare up?

Earlier you'd mentioned your midwife. Can I ask,..are you expecting? I ask because I would normally suggest trying OTC meds like Azo or Uristat to get through the worst of this recent flare, but I don't know if they can be taken if pregnant. Also, baking soda in water can sooth the bladder. While I've heard that's not good if one's diet is sodium restricted, it's probably also not good if expecting.

The one thing you can do is to drink plenty of pure untreated water. That's always my first line of defense to wash out any irritants. But like I said earlier, my flares are usually diet related.

I see your last post was 6+ hours ago. I hope the pain has eased up at least some by now.

Vicki

[Deirdre]

thanks Vicki- I feel a little better. could tap water have flared my symptoms? that's the only thing I can think of. I changed midwife to gyn in my post- I am not pg- i just go to her for all my gyn issues. sorry I was confusing. Thanks again.

[cmclien]

Have you tried the tsp of baking soda in a glass of water to stop the pain? Alot of people swear by that. If you are on a salt restricted diet its not really an option though.

I think if your water is highly chlorinated that could bother you. Better to stick with plain bottled water like spring water, no mineral additives.