Just diagnosed... scared, and Overwhelmed!

**LilL** · 02-04-2009, 08:26 AM

My name is LiL, I’m 35 years old, and live in IL. I woke up one day with lower back pain and lower cramping that would not go away. I also have urgency and frequency, but no pain while voiding. My pain is all on my lower back and pelvic area. I went through 4 months of tests, and procedures, and I felt like I was going crazy. I finally had a Cystoscopy at the hospital, and that’s when I got diagnosed, on December 2nd.2008. I’m on Elmiron, and I do believe that it has helped some, but I still have lots of pain and it’s hard to remember the good days, when you are having so many bad days.. For what I’ve been told by my doctor, and what I have read about Elmiron, it takes 6 months to a year to fully work. I’m getting a little desperate thinking I have to wait that long to feel somewhat normal. I have two little kids and a husband that is very understanding and loving, but I feel that I can’t function some days. I have also been getting some muscle pain in my legs, which has evolved into my knees and ankles. I went to my 8 week follow up appointment, and was told to hang in there and to come back in 6 months. I asked for pain medication and my dr. say that I could take 3 to 4 Advils for the pain, which is what he would prescribe anyway. I do recall starting to get bad pain once I got my period, and I’m hoping it will get better now that it’s gone. I have completely changed my diet, and I’m wondering what else I can do. I have read of so many different things everyone is trying… and it’s a little overwhelming… but I’m ready to start trying some natural treatments myself. I wanted to begin with Omega 3, and calcium citrate, and maybe the Marshmallow Root tea, as these are some of the things that I have seen pop up the most. I found that Sam’s Club has the Omega 3 in their store brand, and was wondering if it makes a difference on what brand I get. They also have the Citracal there so I was wondering about the brand again, as I don’t know at this point what is good or bad for me. Any help or advice I can get will be greatly appreciated.

Thank you!

**statesboro** · 02-04-2009, 09:54 AM

I don't have much time right now. I know that others will chime in. You have found a good place by coming on here. By the way, it is ok to vent as much as you want to. We will understand. Many people would not. Most of the newbies that come on here are told to try sticking the "IC diet", but you must be. I can eat some things on the "no" list without any trouble now.(and never compained of pain with mine) We don't enjoy having IC, but it is still good to know what we have and that we are not going crazy. Besides, IC may suck, but the Earth is still rotating. (and not the end of the world) Hey! God is greater than any problem that we will ever face.(and never leaves us nor forsakes us) Ok, then. much love bye for now

**KarenAnne** · 02-04-2009, 12:00 PM

I am so sorry that you are scared & overwhelmed. I started w/ symptoms the end of Aug. & was diagnosed the end of Oct. It was a frightening time, but did help to find out what it was.

I too was told to come back in six months after being put on elmiron. I chose to get a second opinion because I felt like that was too long to wait, but that was my way of dealing. Good luck w/ everything.

**Goldfinch** · 02-04-2009, 01:57 PM

Hi Lil from IL,

I'm sorry to hear that you have been diagnosed with IC. When I first suspected I had IC I was in a total panic--and stress is the last thing your body needs. I didn't have a good specialist or a treatment plan or anything. I assume you are being treated by a uro. Is Elmiron the only drug you are taking? It sounds to me like you have some aches and pains that might not be addressed by Elmiron, even if it starts to work for you. And you shouldn't have to wait that long to get some pain relief!

If your doctor suggested advil as a painkiller, he may not be aware that ibuprofin can be an irritant for some bladders. You might want a second opinion from another uro. Your pain could be caused by many different things and might respond better to some drugs than others; there's an arsenal of drugs out there. It might be nerve pain if it is traveling down your leg, and there are meds available that block nerve pain. My suggestion is to read as much as you can about the various aspects of IC and how it is treated. There's a wealth of information here, and then if you meet with another doctor you'll be your own best advocate.

There are also plenty of meds that can help provide quick relief from urgency and frequency, such as the urinary tract antiseptics and a variety of anti-spasmodics. Check out the forum on "Treatments for mild IC."

You mentioned omega-3 and calcium. Good supplements, but not exactly first line of defense drugs for IC. You can get omega 3 from fish oil or flax seed oil. If you don't tolerate seafood, try the flax seed capsules. I take them and they keep me regular. There is a calcium thread somewhere, and many feel that calcium citrate, as in citracal, is more easily tolerated. Everyone is different, so if you are just starting to experiment with diet, caution is always good.

I hope this helps! I'm sure a lot more will follow.

**yarnia** · 02-04-2009, 03:33 PM

Aw so sorry you're experiencing this so young. It's so hard to chase after littles when you feel bad. I have a small child too and can tell you there have been days when she had to watch tv all day while mommy laid on the sofa

You definitely need to address the pain issue asap or it will just get worse and your body will fight against it. Ask your doctor for a bladder analgesic like Utira-C. It might make a big difference in your comfort level and urgency. Perhaps he was reluctant because he was just thinking of narcotic type meds vs something aimed at the bladder.
I don't think just Elmiron is going to be enough for anyone with ic, esp at the beginning when you're struggling to get it under control. I have learned my lesson the hard way. If you have pain you do not need to tough it out because that just makes for more pain and inflamed nerves. Been there, done that.

I agree that with the pain down your leg you might have some lower back issues causing nerve pain - and referred pelvic pain. It's so hard to narrow it down sometimes. Perhaps a lower lumbar MRI would be in order. My gyno thinks ic is often related to lower back/hip issues.

fwiw - my gyno suggested I visit a pain management doc for my upper back pain which is not extreme but is fairly constant. I was shocked - thinking pain management was just to get heavy drugs but in fact they were very helpful - diagnosing my pain - trying difference therapies - injections that did no good, and physical therapy that helped a lot. The only drug I ended up getting from him was an anti-inflammatory to use as needed.

I bought the book "heal pelvic pain" and am finding that I have some hip issues so I'm working on that.

I too never have pain with voiding, or infections. My ic has responded very favorably to estrogen therapy - both patch and vagifem (a vaginal suppository) I strongly urge you to demand hormone testing to be sure some estrogen therapy isn't needed. You might think you are too young, but plenty of women start perimenopause in their 30s. I have fsh consistent with menopause now at age 46 even tho I am still having periods. Everyone is different. I couldn't tolerate the elmiron at all.

good luck - there's lots of info here to help!

***ICNDonna*** · 02-04-2009, 04:03 PM

First of all, I'd like to welcome you to the IC Network.

You'll find a wealth of information in the Patient Handbook on this site. I encourage you to work with your physician to find the most effective treatment options for you. And it's important that your doctor is aware of any supplements and herbal remedies you try.

Sending healing thoughts,
Donna

**yarnia** · 02-04-2009, 04:36 PM

Yes, it's important to work with your doctor, but I don't think sending someone in pain on their way with no pain meds and instructions to check back in 6 months is appropriate.

The squeaky wheel gets fixed..or whatever that saying is lol. I do work with my doc but a lot of what we are trying is stuff I've learned here - and she's happy to hear of new things. I even stopped in and spoke with the compounding pharmacy myself, and they volunteered to stop by and brief my doc on what they were doing for vestibulitis treatment. She was happy to have the info.

Bottom line - we've been pretty successful - and you can be too! Good luck.

**VAhope** · 02-04-2009, 05:02 PM

I am having alot of the same symptoms as you. Some difference of course, but know that you are not alone. I just began elmiron as well. For pain I was given naproxen (aleeve) and when I felt that flared me was then told to take tylenol. The pelvic pain is excruitiating. It is also is my hip and legs. sometimes my foot hurts and I think its from the IC. So at 27 my life is turned upsidedown as well. I am clinging to faith that we will get better. I just took my first dose of Aloe Juice with a pinch of baking soda. If it seems to help I will let you know. I am happy for you that you have a loving supportive husband and family. So far the only thing that has helped me at all is the IC diet, and peppermint tea with honey seems to be soothing. I wish you the best if you have any questions or remedies that you find helpful please let me know! Best wishes too you

Amanda

**BT2008** · 02-04-2009, 08:43 PM

Hey Lil,

I am very sorry to hear that you have IC; it is truly a horrible disease to have to live with! Also, I agree with everyone else--you have definitely come to the right place here at the IC-Network! In many cases, we are all learning together as we go along and are collectively helping to better educate our urologists/docs about how to better treat IC!!

The thing that concerns me the most about your post, however, is the fact that you were given an "8-week follow-up" after your cystoscopy (I had to wait 2 weeks, which was long enough!!), and then you were told to "hang in there and come back in 6 months"??????!!!!!!!! Plus, Goldfinch is right about ibuprofen! It can, and does, oftentimes make IC pain that much worse!

With those two comments made, I will refrain from posting in an open forum my immediate thoughts on your doc's judgment--choosing instead to use an icon to describe what I am thinking:

May I suggest you find another urologist who will take a more active and compassionate role in your IC care? There are a lot of other options to be tried for IC sufferers than just Advil and Elmiron, especially during the 6+ months that is usually takes for the Elmiron to start working really well. Even then, it doesn't always help by itself.

I see my urol every month, and I can even call him if I really need him in between appts. We have been through a lot together over the past 4 months! And I can tell he really cares about my welfare, and does not want me to suffer anymore than necessary.

Here on the forum, we can and will help support you on an emotional and intellectual level, but we cannot treat your very real and very painful symptoms! So, please consider getting some better medical care!

Let us know how you are doing...

~Beth

**LilL** · 02-05-2009, 02:05 AM

Thank you sooo much to all of you for taking the time to reply. I feel so much better knowing that I'm not alone. I am seeing a urologist, and will be calling him today to discuss my pain. I am also going to look into a possibility of switching my doctor based on the answers he gives me today. I'm also going to try the Citracal to see if I see any improvement. It amazes me how you all know what helps and what doesn't. My back pain seems to just be there ALL the time no matter what I do. I hope I can get to know my body as well as you all do... I think that's the part the frustrates me the most. Anyway, thank you again you for giving me hope. I do feel very lucky to be alive!!!

**elamar** · 02-05-2009, 02:20 AM

If your urologist won't give you pain meds, maybe you can talk to your family doctor. Have you tried Tramadol? It is non narcotic but stronger than over the counter meds. It also comes as a generic. This med helped reduce my pain. My pain is never gone all the way, but I could at least function better in less pain while using tramadol. If you are having trouble with frequency and urgency, urelle or prosed can be very helpful. I use utira-c which is the generic of urelle. I hope you can get some help. If you decide to use a fish oil supplement, look into using an enteric coated tablet. I hate seafood, when I took regular tablets, I would burp up the oil and it would taste so awful. The enteric tablets don't open until they get to your intestines so you won't get the bad side effects. Good luck to you.

**LilL** · 02-06-2009, 03:53 AM

Thank you so much for your advice elamar. I contacted my ur, and the nurse I talked to was the nicest lady. She called in the Tramadol and Urelle as well. I was told that Utira-C is not a generic brand for Urelle though. They are both brand name meds, and can not be interchanged. I'm hopefull that it will help. I was told to take one pill as needed, and not to exceed 4 per day. I also got the Citracal, but want to wait a couple of days to see if the Urelle helps. Thanks again to all that reply...