Newly diagnosed and New to ICN

[woolybee01]

Hello everyone,:smile tee
First of all let me say how happy I am to have discovered this board! It has been a lifesaver for me. I was diagnosed with IC three days ago after seven long months of suffering with the symptoms of IC but not knowing what I had. My symptoms started back in March of this year. I thought I had a bad UTI so I went to the doctor for antibiotics (which she gave me even though my urinalysis came back normal). Two weeks later I was still experiencing frequency, pain, burning, pressure - all which continued to get worse. After probably 4 or 5 more trips to see her and every blood test under the sun, and a couple more rounds of antibiotics she told me I should go visit my OB/GYN, which I did. He said he thought it was probably a really stubborn UTI and immediately put me on some really strong antibiotics which gave me some bad side effects. When none of those worked, he told me I had uterine prolapse and that the pressure on my bladder was causing all my problems. I thought OH JOY, that's it! Now I'll have the surgery and it will all be over. But before he did the surgery, he had me see a urologist "just in case" there was something wrong with my bladder. The urologist performed a cystoscopy in his office and said there was nothing wrong with my bladder. So, at the end of July I had a laparoscopic hysterectomy. Everything went fine with no complications. I was supposed to go back to work after two weeks but at the end of two weeks I developed terrible pain, pressure, bloating, and extreme frequency. I thought it must be a REALLY bad UTI. Back to the OB/GYN for testing, which of course came back normal and yet he prescribed yet MORE antibiotics. All to no avail. By this time I'm having to have pain killers (Tramadol) to get me through the night and living on Ibuprophen during the day at work. Six weeks after my hysterectomy my gyno did an ultrasound which indicated all my problems were with my bladder (duh) and not related to my recent hysterectomy. My OB/GYN released me and referred me back to the urologist.

Around that time I started searching the internet for answers and that is when I came across the ICN board. After I started reading all the stories (which sounded so familiar!), I had a pretty good idea I had IC. When my appt. with the urologist finally arrived, I was ready. I told him I thought I had IC and he said well, there's only one way to find out and that's with a cystoscopy with hydrodistension. So, three days ago I had the cysto with hydrodistension and back came the diagnosis of IC. My husband spoke with the urologist, I haven't actually spoken with him yet but that information was given to me and I have an appointment next week with my urologist to decide my path forward.

I am thankful and relieved to finally know what's wrong, but also angry that it took so many months to get this diagnosis. So many needless rounds of antibiotics, tests, and waiting in doctor's offices. Not to mention all the money spent on prescriptions, hospital and doctor's bills! :cussing: I now have several thousand dollars worth of medical bills from my surgeries and tests.

But at the same time, I'm very, very grateful to know I have a path forward. I don't know what it is yet, but with God's help, and the help and support from the people on this board, I know I'll make it. :angel:

I didn't mean to be so long winded here. Thanks for letting me share my story.

[asIshallbe]

This website has been so helpful to me and I am glad to see you have found us. I am sorry you had to go through all of that to get to where you are, but it is nice to know what it was the whole time. People on this board are extremely helpful and very nice to me. When I have a question there are so many others that help me. Also I can type the subject in the search field and I usually find an answer.

You may want to check out the following, these 2 are a natural route that may help you. I have to do both natural and prescription.

Desert Harvest Aloe Vera

Cystoprotek

You can google it and they each have websites that are helpful.

I have had IC for 2.5 years now and lord I will say it is hard, but I will not give up hope.

I wish you the best and just wanted to welcome you here! I come to this website I am sure much more than I should, but when I feel all alone with this disease, this place makes me feel surrounded with people who understand and care. :smile tee

[Snowden1]

Boy, you have been through an ordeal. It is so sad that you had to have a hysterectomy that you didn't need. I also have had a complete hysterectomy - there is a loss with that too. There are some nice people here that are very knowledgable. Things I suggest to help you now are find a good urologist, try cystoprotek, and Aloe Vera. There are some good treatments out there - how did you feel after the hydro? Did it help you? Let us know how you are doing.

Teresa

[woolybee01]

Thanks so much for responding. I appreciate the tips and suggestions for products and treatments to try. I hate the idea of having to take drugs, especially the ones with bad side effects. I do have a good urologist. He is supposed to be one of the best here in Texas. As far as how the hydro went - it was a fairly painless experience. I had no problem with the anesthesia and afterwards had absolutely no pain, EXCEPT the first few times I had to urinate. That wasn't much fun, but after a few times it was ok. I came home and slept the rest of the afternoon and the next day felt fine. I've actually had much less pain and discomfort since the hydro but tonight I ate a piece of chocolate cake a friend brought over and now I'm hurting really bad. I should have known better. boo hoooo

[KarenAnne]

:welcome: This site was a lifesaver for me too. I hope you get on a good treatment plan soon & start feeling better.

[woolybee01]

I went back to the uro today as a follow up to my hydro last week. This was the first time I've actually talked to my dr. since the procedure. He said although I have all the classic symptoms of IC, from looks of the photos taken during my hydro, he isn't sure IC is my problem. He thinks it may be totally food related. I saw the photos and my bladder has only a few tiny red areas and red spots. No lesions. And he said my bladder actually held more than the normal amount of liquid. I have no reduced capacity at all. Which is a good thing!

He has me on a very strict diet for the next two weeks to see if my problems are all food allergies. It is basically a very strict IC diet. Mostly meat, potatoes, rice and veggies. I'm going to try this for two weeks and see what happens. He didn't give me any meds at all. He is reluctant to give me any medications until he sees what happens with this diet. :flower:

[SharonA]

I really hope the diet works for you. There are many Members who report significant reduction of symptoms with diet. It is possible. I like that your doctor is having you try the diet before putting you on medications.

:):):)

[woolybee01]

Well, this is day 4 of being on the IC diet and I'm feeling somewhat better. :) I've been very regimented (so far) at sticking to it. The only slip I've had was yesterday I had three Fritos. Otherwise I've been very good. :angel:
I've been eating chicken and rice, oatmeal, cottage cheese, string cheese, salmon (not canned), steamed veggies and LOTS of water.

Yesterday, I went to the drug store and bought some probiotics and took one at lunch and one later in the afternoon. Last night, right around bedtime I had some cramping and diarrhea. That went on for a few hours. Have no idea what that was about. Maybe my system is going through caffeine withdrawal or the probiotics didn't agree with me. :confused: I'm almost afraid to try them now, but think I'll take one before bed.

Today I'm feeling somewhat better, just tired since I didn't take anything to help me sleep last night. No Ambien. No Tramadol. I'm having some really weird dreams too. My body must be in shock from the change in diet.

I'll report back in a week or so.

Blessings to you all.

[Diamic65]

:welcome: To the IC FAMILY. I'm sorry you had to go through all of the suffering. Was the Hysterectomy needed? I was diagnosed back in 2005. I've had UTI's ever since I was a little girl. I can remember being so much pain while sitting in school. My Mother was diagnosed in 1998. I can remember her being in so much pain and plus having RA on top of that. back 2005 I had a really bad UTI and was unable to pee. I looked like I was going to pop. I kept going to the DR and being put on all kinds of antibiotics running test. It was so bad my husband took me to the ER. The URO at the hospital done some test and nothing. So my family DR sent me to a URO at another hospital. They done they HYDRO and it came back IC. I don't know what I would do if it was not for the ICN. It has saved me so many times. I hope you start to feel better soon.

Diane Davis (DIAMIC65):dance:

[greygirl]

You are such a trooper wooleybee!! Keep up the hard work. I was recently diagnosed, so I do not have many tips or suggestions yet, but I just wanted to pass on my support and encouragement.
Take care!

[Snowden1]

Dinamic,
How are you and your mom doing now?
Teresa

[Diamic65]

My Mother is doing ok. She still has bad flares from time to time. I was in a short remission for almost of last summer. But know the IC FLARES are weekly and I don't know why. I take my meds and a couple of months ago my URO put me on Vistaril but.. I really don't see a lot of diff.

DIAMIC65:bonk:

[Snowden1]

I also had a short time without pain this summer. I don't know why. Have you been on the other meds long? I know Jill said it may take up to 3 months for some of those to start working. Elmiron is obviously longer. Have you done any instillations?
Teresa

[woolybee01]

Diamic65 - yes I did need the hysterectomy. I actually had a gyno tell me several years ago that I would eventually need one. In many ways I feel a lot better since the surgery. On Oct. 31st, it will be 3 months since my surgery and I can definitely tell a difference, in spite of the IC. So evidently I had two things going on at once.

I went to work today and actually felt pretty good all day. Just a few twinges of pain here and there and a few trips to the bathroom. Not too bad! I've shared with several of my co-workers about my IC and showed them a copy of my IC diet. My hubby has been so supportive. When I got home from work he had pasta and sauteed veggies cooked for me. This is actually a healthy diet I think. :)

[Oscar]

I'm sorry you had such a long road to get here. I've been lucky, got diagnosed before I completely trashed my bladder. There's a lot of good people here. You are not alone.

Diet is first and foremost. It's helped me get to 80% immediately. At the risk of stating the obvious, you didn't mention using Prelief....almost everyone here does and studies say 70%+ report that it helps a lot.

[awilson4356]

Hello and welcome. Wow, your story sounds so very similar to mine so I can completely relate and empathize with you. This support forum has been absolutely wonderful for information and hope. I am very glad to hear that your symptoms are able to be mainly comtrolled by diet. I will continue to send good thoughts your way and hopefully this will be all that you need to do to live with this awful disease. Wouldn't that be wonderful?? If however it does need a little more to be able to control it this sight and the people on it are very helpful. All you have to do is ask and you will get many helpful suggestions.

Sending you hope and happy, healthy thoughts.

[Glenda2]

I am also new to IC. Just diagnosed on 10/12/09 (8 days ago).

This has really set my emotions into a whirl wind tornado.

I don't know anything about this condition , other then what I am reading here on our board.

And I am ever so greatfull this board is here for all of us. :pray:

I really hope the Elmiron helps , and the Darpaz also works.
I know it is way too soon to expect relief yet.

I wish my doctor would have took me serious about the bladder pain 8 months ago. I might already be well on the road to recovery by now. (Remission that is )

[woolybee01]

Oscar - to answer your question - no I am not taking Prelief. I thought if I was watching my diet so carefully Prelief wouldn't be needed. :confused: But I will definitely try it. I've been reading that it does help a lot of people.

The IC symptoms are bothering me slightly today. I think maybe I should watch the garlic. My husband cooked dinner last night and had a LOT of chopped garlic in with the pasta & veggies. This is day 5 of my IC diet and I would just about kill for a Diet Coke about now. But I know it would probably send my bladder into orbit. :tsk: I guess I should try and find some Prelief today at the drug store. Hopefully, I can find some.

[Oscar]

Watch the veggies too. Per their website Prelief can be found in TX at:

Drug Emporium, Medicap Pharmacy, Walgreens

For the short period that I've been into this I think it definitely makes a difference.

[ddktt]

I agree with using the Prelief regularly. I have not eaten a meal or snack without it since I bought my first bottle shortly after I found out about it from this site. The person who invented it is a genius. Thanks to those who figured out it was helpful for bladders too!!!

Here's to you feeling much better soon!

[woolybee01]

Greygirl - Thanks so much for the encouragement! Good luck to you too!

Oscar - I bought some Prelief yesterday and have been taking it. Of course all I had for dinner was a baked potato and some cottage cheese, but I took the Prelief anyway. I'm being really careful about what I eat. Thanks for the tips - I really appreciate everyone who had responded to my postings. I feel like I'm not alone in this. :)

[woolybee01]

As an update on my IC Diet - I stuck to it religiously for two weeks and it truly did wonders for me! At the end of the first week I felt a lot better and by the end of two weeks I was feeling almost completely normal! I was even beginning to think the IC diagnosis was a big mistake and that I really didn't have IC but some food allergies. :loco: How soon we forget. I was also taking Prelief before every meal and taking calcium w/magnesium supplements twice a day. It was really hard but I stuck with it and it paid off. The hardest part was giving up coffee. Then I tried adding different foods back, one at a time (per my urologist's suggestion...not mine). I tried adding onions, mayonaise, and a few other "bad" foods with no problems. Then a few days ago I started adding one tiny cup of coffee in the mornings. (yes...I know...really dumb :tsk:- taking Prelief beforehand). For the first couple of days, all was well. I thought I was WELL. Then this morning I woke up once again with pain, pressure and urgency. :bonk:

So, I have learned a valuable lesson the hard way. Number one - the IC Diet definitely does work for me. Number two - I need to give up some of my favorite foods forever - namely coffee. Jill is right when she asks the question why would you pour coffee on a wound? Giving up coffee has been SO hard for me, but it sure felt good to feel good again there for a while. So now I'm back to the IC Diet and hopefully, will be feeling better again soon!

[ddktt]

I need to give up some of my favorite foods forever

Not necessarily. Over time as your bladder gets better you MAY be able to have some foods again. Everyone is different, but 2 weeks is not very long for a healing process to take hold.

I gave up coffee for 3 months and now I have can have a cup a day. I still take Prelief with every meal/snack.

There are still some foods I have not added back: citrus, soy sauce, multi-vitamins, but as time goes by I might try one of those again in a small amount to see if I can tolerate it.

Baby your bladder and give it a chance to heal and calm down. Over time you could try a small challenges with problem foods.

[woolybee01]

Thanks so much for your post. And you are right, two weeks was not long enough to let my bladder completely heal. I was going on my uro's instructions, which was try the diet for two weeks and then, if I was feeling better I could start adding back foods one at a time. Obviously, I should have given myself a lot longer. I'm also going to try the Cystoprotek. I've tried finding Marshmallow Root Tea here in Houston with no luck.

[ddktt]

I've tried finding Marshmallow Root Tea here in Houston with no luck.

I couldn't find it either so I order it online from Amazon. I sip it as regular beverage throughout the day. Very mild tasting.

I keep some in my purse and order hot water at restaurants.

[woolybee01]

Thanks again for the info!

[Mrs. Peel]

Welcome from me, too!