Finally getting up the courage to intro myself

[Sumigirl]

My name is Caroline and I’m new to the forum but I’ve been reading ICNetwork site since May when I first starting having problems with my bladder. This site has been a godsend for me. I’m 51 and have been married for 23 years to a wonderfully understanding man.

I feel like my life changed on May 7, 2010. What was supposed to be a happy day (my anniversary) was the beginning of a nightmare. I don’t think I’ve had a day free of pain since then. What I thought was a simple UTI was just the beginning of bladder pain, urgency and frequency that was been somewhat relieved but never stopped.

I went through weeks of begging my general doctor to help me only to have her refer me to a gyno who did a trans-vaginal ultrasound to tell me that I had cystic ovaries (known that for 20 years) and a elongated uterus so I should try bladder training. He wouldn’t give me a referral to a urologist for 2 months. I put myself on the low-acid diet and Prelief (thanks to this site) and that gave me some comfort and ease of pain.

Just before I finally got my urology appointment, I developed a terrible UTI that made me cycle fevers for 4 days. That illness scared my husband to death and now he watches everything I eat and do.

When I finally saw the urologist, I mentioned the words “Interstitial Cystitis” and he wouldn’t let me finish saying “don’t even think about that yet” but he did order a a trans-vaginal scan of the bladder and cystoscopy and advised me to stick with low-acid eating, Prelief and said that AZO was OK to take somewhat freely. My cystoscopy showed no problems but he then prescribed Ditropan and sent me on my way. That was in late September. The Ditropan worked somewhat for the first 6 weeks but then I noticed the effectiveness was wearing off and I was back to taking AZO more and more often.

I went on a long anticipated trip to Spain for 10 days and managed to live through it although jetlag, the stress of traveling, and questionable food took it’s toll on my bladder. I was prudent enough to bring lots of Prelief and Azo as well as mini handwarmers that I used as heating pads in my pants.

Once I came back from my trip on Dec. 10, I started to get worse again and this past weekend I thought I was going to go crazy. My husband was out of town with our only car so I had to taxi to Urgent Care on Saturday night. They put me back on the Cipro and also gave me Vicodin for the pain. Unfortunately, the Vicodin only worked for 3-4 hours and subsequent doses worked for less than 2 hours. However, it was so lovely to be pain free (and a bit loopy) for those brief moments. I had forgotten what normalcy had felt like -- so sad.

My husband came back the next day (driving 500 miles in 2 days) and he felt terrible that this happened while he was away. The funny thing is that he had to pee really badly and there were no rest stops and he was in agony while driving. He told me he could finally relate to the pain I must be having and sees my condition in a whole new light. Empathy is so much nicer than sympathy.

I’m trying to see the urologist soon to reassess where I am but the earliest appointment I could get is Jan 27. However, he has prescribed Prosed for me and I’m supposed to start it tonight. If I don’t find some relief soon, I will seek a specialist in my area (Washington DC) that is off my HMO.

I guess that’s it and thanks for reading through this long post. I’m hoping to learn more and get & give support. I’ve felt so isolated with this condition but I’m finally confiding in some of my co-workers since they’ve all noticed the change in me. I’m not the sunny, up-beat person I used to be. I feel I’ve lost her to this illness and it breaks my heart.

Caroline aka Sumigirl

[KatieB]

Caroline! I'm so glad you had the courage to introduce yourself. This is a place of support and understanding. I SO relate to your problems with your urologist. You're probably going to need a second opinion. I'm in a place right now where I don't have a urologist because of the same thing your doc said "don't mention IC". The 2nd uro I went to "said" he treated IC but was really prehistoric in his treatments. I guess sometimes it just takes a lot of looking to find the right doc. Good luck to you and welcome, again.

[kadi]

Hi Caroline,
Welcome to the IC Network I really understand what you're talking about. My IC started July 10, 2003, rapid onset & quickly my life deteriorated. It took awhile to get my treatment plan together, but over time, I have improved a lot! I can wear jeans again, work fulltime, attend church, exercise moderately, travel. What I'd like to share with you is that if it turns out that you do have IC, there is a lot of hope. Treatments have come a long way in the last 7 years and many patients find one or two treatments and get back to normal lives fairly quickly once diagnosed & with a doctor accustomed to treating IC. I highly recommend second opinions and even third opinions if your doctor is not educating you about IC and offering different types of treatment.
Hang in there, read a lot on this website - the informational articles on the home page, as well as these forums, really embrace the diet (become a label reader - many foods listed as safe may not be if the particular brand includes acidic preservatives), and be gentle with yourself. You may not be your usual self right now, but you don't feel like your usual self! You'll get her back again
Sending a hug & wishing you better days soon,

[NancyB]

Estrogen as an IC Treatment

Dear Carolyn -

Welcome to the ICN. Sorry you are having bladder problems.

Since you are 51, you could be low in estrogen. You might want to talk to your gyno about getting some vaginal estradiol estrogen and see if you symptoms get better. Did you know that being low in estrogen down there can cause IC type symptoms? You might want to go and read my story under Success Stories that I posted back in December 2008. You can access it by clicking on my name on the upper left. Then, clicking on View Public Profile. Scroll down to Statistics and click on that. Scroll down and click on Threads Posted by NancyB. Click on that and you will find Estrogen as an IC Treatment. Click on that and the post will come up.

Hope this is helpful to you.

NancyB

[aleet7]

Welcome Caroline!
I'm sorry we are meeting you this way but I'm glad that you found us! I also can relate to the testing, UTI's and rushing to Urgent care! It is wonderful to have a spouse who supports you!

I hope that you get relief and answers soon!

Best Wishes,
Aleet7

[Sumigirl]

Thank you!

Thank you for your kind replies. It's so nice to be welcomed. I'm prepared to give the Prosed DS a try tonight and intend to follow up if it doesn't work for me. I don't know if I should ask for another specialist from my HMO (Kaiser-Permanente) before going off plan. I want to research specialists in the Washington DC area and would love to get a referral from another IC patient. Is that possible on this site?

I have been eating the IC Diet since late May and label reading has made my grocery shopping very interesting but lengthy. I find I can tolerate unexpected foods like mayonnaise and white chocolate but most breads (Pepperidge Farm, Arnold's) are not good. I find the fewer ingredients, the better. I'm buying higher end breads and can easily justify the cost. I really miss cereal in the AM but I can have oatmeal without additives. I've always been sensitive to perfumes, dyes and soaps so that hasn't been a problem since I use very gentle products already. Fortunately, I've never been a coffee/caffeine person nor do I drink alcohol so I don't miss them. However, I love to cook and I miss all the acidic foods like tomatoes, fruits, and cooking with wine. Cooking has been a real challenge and summer salads were plain until I made a low-acid ranch dressing. I truly believe that the IC diet has made my life bearable - I can't imagine the pain I would have endured otherwise. Social events have been tough since so many things are off my list. I often end up drinking my plain water with plain bread or crackers. I usually stuff a Larabar in my purse for emergencies. Thank goodness I've been a great water drinker for years and I've rediscovered how much I like plain milk, too.

I have mentioned the estrogen depletion to my internist, gyno and urologist and there was little response. I went off birth control in late March and I've always suspected that could have been the trigger for the bladder condition. I definitely want to read more about this connection.

I would love to get back into an exercise routine (I used my Wii all summer) but the pain has limited me for now. I was able to walk while being a tourist in Spain but it was difficult at times.

I'm certain I will be very busy reading everything on the site and on the forum. There is such a wealth of information here - it's almost overwhelming!

Thank you!

Caroline

[KatieB]

Hi! Go to the front page and go almost to the bottom of the page and there's a topic something like meet people by state. DC is on there! Good luck!!

[kadi]

Hi Caroline,
I developed IC my second cycle off a birth control pill I'd been on for 10 years. I restarted it, but the IC was launched. I have known some patients though who returned to their remission by going back on their birth control pills. Interestingly, my mom developed her IC when she stopped her hormone replacement therapy. She got a lot better when she went back on it. She had kidney stones removed and is now in remission, though she still takes a low dose Elavil and does physical therapy from time to time.

Just want to encourage you that while you may see some of us on a lot of treatments, there are a lot of patients that get better with just a little intervention.

Good for you for trying the diet! For cereals, a lot of us are ok with cereals without preservatives or added vitamins. There are a lot of brands like that available at health food stores, Whole Foods, Fresh Market, or Trader Joe's. I'm not sure what stores are available near Washington DC, but you might send a private message to Luvsterriers. I think she's in the DC area.

I've also been to Spain. Spent the summer of 2000 in Madrid (before IC) & summer 2008 in Málaga. Not the easiest place to have an IC flare, but a wonderful country with great things to see & some of the nicest people on earth- I hope to go back

Hang in there, it will get better!

[traceann]

I just wanted to add my to the rest!! Nice to finally meet you and I am glad you started posting!

Hugs,
Tracey

[ICNDonna]

I'd also like to say to the IC Network.

If you scroll to the top of this page and click on "Professionals" you will find a list of those who have been recommended by other IC patients.

Donna

[Sumigirl]

I wanted to post an update since I've had significant improvement since I started the Prosed. It took about 2-3 days for it to really kick in (that's when my pee turned a lovely shade of blue) and since then I've been doing much better. I'm still very scrupulous about my diet and take Prelief with every meal. Overall, the pain is reduced considerably. I have long periods of normalcy, occasional discomfort and very few knifelike episodes. I'm able to relieve most of the discomfort with small hand warmers wrapped in diaper material and worn inside my underwear. I think the gentle heat relaxes the muscles there. I haven't taken AZO at all and Tylenol seems to take care of the minor pains that the warmers can't ease.

I have far fewer side affects from the Prosed than I did with the Ditropan. The dry mouth is hardly noticeable and I'm not as dizzy and no blurred vision. The bowels are still slow and I get diarrhea more often but it's not horrible. I've only felt the need to take the Vicodin 2X since starting and I think it was because I didn't wait an hour after taking the Prosed to eat and I took the Prelief too soon.

I just got the Pilates DVD for Pelvic Pain and want to try it this weekend. I need to exercise much more - it's such a great stress reducer and I think stress is a real factor for me.

I was so afraid that the holidays would be awful but the Prosed took over just in time. I was off from work from Dec 24 through Jan 2 so I was able to get real rest, eat cleanly and walk daily. I think the time off did me no end of good.

Thank you all for your kind support. I hope this upturn continues indefinitely but I'm worried that it could end at any time. I still have my appointment with the uro at the end of the month which I intend to keep no matter how well I'm doing.

[bob04951]

Hello Caroline

Sorry you are here, but glad you found us. Glad you are feeling a little better. It comes and goes, but hopefully for you it will stay down. Perhaps you have found the thing that will help you.

The diet is an important part, and don't be discouraged by it. It's not so bad, and can actually make you eat healthier and read those labels. Many, many suggestions and substitutes for no-nos. It may help you just to print something out about IC for your co-workers so they can have a better understanding and empathize. The girls generally "get it" better than the guys, because any girl who has had a UTI or regular cystitis will be better able to comprehend what it would be like to have something like that 24-7-365. My hub is the one with IC and I GET IT, but his buddies just don't.

Good luck to you and don't be depressed about it. Hopefully you will find the right doc, or your doc will finally understand (educate him as well). And you will find the right combo of stuff that helps you. Everyone is different as you will see here, but so many excellent suggestions that have helped us a lot. And tell your hub he's a great guy for understanding. Take care. Jill, wife of Bob

[musiclover]

Hmm, I can't figure out why he would put you on a low acid diet but won't say it could be interstitial cystitis. If the Prelief and low acid diet helps you, it seems like a good possibility it is IC. I don't think getting the diagnosis is something he should avoid, I mean you already have the problem so it's best to know what it is and get on Elmiron and/or other treatments right away. I hope you can find a second opinion.