New to the board, at my wits end!!!

[Sarah Rose]

Hi to all! I am soooo thrilled to have found this message board. I am at my wits end with this IC disease and diagnosis.

A little history on me. I am 29 years old, divorced, no children. I was diagnosed with IC in Nov of 2003. I also have severe endometriosis and have problems with ovarian cists. I have had 4 laps since 2001 (one about every 10-12mnths). I was diagnosed about 3 months after my 3rd lap surgery. For 3 months my docs treated me for bladder infections, etc. Finally they sent me to see a Urologist after my bladder symptoms weren't clearing up...he immediately did the bladder camera procedure. I'm not sure how I lived through that 5 mins of pain and madness but ultimately I was given the devastating news.

For 3 years I had tried to get pregnant, took major doses of fertility pills and because I have endometriosis as well just kept thinking it was my plumbing that was the cause of my infertility. My husband left me and then I discovered that he had, had a vasectomy before he married me. Nice guy huh? Long story short...I just seen the Urologist last week and he told me that the fertility pills probably set my bladder issues over the limit. So almost like saying...if I hadn't taken those pills I wouldn't have these issues but one never knows for sure. Feel like smacking my ex upside the head somedays. :headbang:

Hope I'm not getting too long winded here. I find that I am having a huge problem finding a primary doctor who understands IC and is sympathetic to it. My Urologist is not the greatest either..working on finding a better one here in Portland, OR. When I seen him last week he was quite rude to me....told me to suck up the pain...would only give me 6 vicodin and made it clear that I better not ask for more. He also was stern about me changing my diet..which I will admit I have been in denial about my IC for the past 2 years and haven't changed my diet. I am committed to making a effort to change my diet.

Basically...I am MAD AS HELL at IC!!!!!!! I am depressed most days, I am embarrassed when I'm with friends and have to have them stop at every damn rest stop so I can pee. I am exhausted physically and emotionally from the physical pain IC causes. There are some days I would really rather just stay curled up in bed and never leave the house again.

I have noticed that stress is a huge factor in my symptoms. We just had 2 deaths in the family and I have noticed that my bladder has been worse during this time, can anyone else relate?

I take Elmiron, does not a bit of good I think. I take pain meds as I can get them. Right now I have no medical insurance but as soon as I get it again, I am scheduling a hysterectomy and finding all new docs. Hopefully docs that know something about IC and understand that the pain isn't in a persons head.

I will let this be all for now. I feel so blessed to have found this site. Thank you all for sharing your personal experiences. It feels great to not be alone with this crap.

If anyone knows of a good doctor in Portland, OR...please let me know.

Warm Regards,
Sarah

[green_the_fish]

Hey Sarah. I can't sleep tonight, so I might as well make myself useful by replying to your post, huh?

Unfortunetely, endometriosis and IC often occur together. These two illnesses have even been nicknamed "the evil twins" by a group of researchers, since they like to cause havoc together.

The procedure that your uro did is called a cystoscopy, and it's usually done under general ans. now, when being used to diagnose IC. That must have been painful. Most cases of IC are not visible without hydrodistention (stretching of the bladder under geners ans.), so you must have a pretty severe case for your bladder to show damage with just a regular cystoscopy. Do you have Hunner's ulcers?

Hormonal changes are often noted to be catalystic for IC. I've heard some ladies on the boards say that they got their IC after stopping birth control, so your story makes sense to me. Oh, and that was really jacked up of your ex to lie to you about his vasectomy! Sounds like it's a good thing you got divorced :mad:

I've also had problems finding docs to treat my IC. Let's not even get into the issues I've had there, or I'll be whining all night. Let's just say that your problem there is very familiar to me, but I haven't found a solution for it yet. All I can recommend is to keep searching for new docs until you find one who isn't a jerk.

IC is painful, definetely. Since the pain is coming from the bladder, it's a special kind of pain called visceral. Visceral pain, which is pain that comes from an organ, is different from regular skin and muscle pain, because it's harder to treat, and hurts in a deeper way. I think you understand what I mean there. It's a special and difficult kind of pain that we have to live with.

Many people say that IC is closely related to stress. I agree, and I think that all chronic illnesses are stress-related.

I also take Elmiron. It can take anywhere from six months to a year to take effect, so you might not wanna give up on it yet. I stopped taking mine at four months, but now I'm giving it a second chance in case it works. Pain meds are very important to me. I hope that you can find comapssionate doctors to prescribe you the doses that you need. It's normal to doubt yourself sometimes, but it's important to remember that your pain isn't in your head: it's in your bladder! Anyone who tries to tell you otherwise is ignorant.

Nope, you don't have to be alone with this crap, or this pee (pun attempt! run!)... you will find lots of support here :)

Sorry to say that I don't know of any good docs in your area. Actually, I'm not sure if I know of any good docs period. I'm sure they're out there somewhere, though :hmm:

Bye bye now...

[vm]

Our head moderator is in Oregon so she may have some ideas about good uros - her name is ICNDonna and I am sure she will see this sometime today.

:welcome: You've been through the wringer, huh? :( How long have you been on Elmiron? It can take 6-12 months to kick in - the wait is so hard.

It's good to hear you are committed to doing the IC diet. That is so key for most ICers. It isn't easy by a long shot, but it sure can make a difference in our discomfort.

Yes, stress can set off the flares. It sure has for me.

Good to see you and feel free to ask any questions as you think of them, OK? :kissing:

[ICNDonna]

:welcome: to the IC Network. There's a support group in Portland --- you can find the name of a contact person at http://www.ichelp.org They may be able to make a physician recommendation.

I definitely would encourage you to put yourself on an IC diet starting today. It can make a huge difference in how you feel. You'll especially want to give up sodas and coffee --- and if you're a smoker, that can also be a problem.

Are you having problems that would require a hysterectomy? That's a pretty big step to take --- if I could do it over again, I would go for second and third opinions before having it done.

I live in the country outside of Eugene --- maybe one day we can meet.

Sending warm healing thoughts,
Donna

[Sarojini]

:welcome: to the ICN... you sure have been through a lot!! I'm so sorry for all of your troubles. I hope you can find an excellent doctor to help you soon :grouphug:

[Ginny]

Yes, stress can set it off.
When you do get insurance make an appt with a Pain Specialist. Most Urologists will not give pain medication. Also, your search for a primary that understand IC will be a long one.
Don't give up on the Elmiron too soon. Like someone said, it takes at least 6 months.

Ginny

[SharonA]

:hi: and :welcome: to the ICN...The best place to find support and understanding on the whole internet.

Over the 4 years that I have been diagnosed with IC, I have found that stress is my #1 trigger. I work very hard at keeping my stress level down to a dull roar. I am a major worrier. My father was a worrier, also. I think that is where I learned that behavior.

Do check out the IC Diet. Many here have found relief by finding out what foods and drinks cause them problems. I know that when you first begin the elimination diet, it can be very restrictive. But, it is very important that you discover what causes flares...for you.

I am very glad you found us. :) :) :)

[traceann]

Hi Sarah and welcome!! I agree with the others, although the IC diet can be as big a pain to do as our bladders can be, lol, it's been so helpful!! I started it back in Nov of last year, and as I have gone along, I have found that now there are many more things I can tolerate and eat than I thought I would be able to. But in the beginning, I was very strict with it. It helped me to think of it as "temporary", instead of forever. Just a mental trick that helped me tolerate giving up tons of potential pain producers, lol. I just kept telling myself "it's only for a few months, you can do this for a few months".

I followed what was recommended to me, to eat soley off the "usually ok" list for a few weeks. I think I did that for about 3-4 weeks, until my bladder started to calm down. Then I started adding in things from the "may be ok" list one at a time, and would wait for about 3 days before trying anything else new. If I had no increase in symptoms, it was a keeper. If I did have an increase it went on my no-no list, to be re-tried at a later date, if it failed the test again, it was on to the permanent no-no list for the offender! ;) As I said, I have now discovered after being on the Elmiron for about 9 months now, and taking my Ditropan and Vistaril, that I can eat many more foods than I thought I would be able to. Plus, what may be a trigger for one person, is perfectly fine for another. It's crazy that way, that's why it's a pretty good idea to find out what your specific triggers are.

Here's a link to the IC list of foods that I was given from the site here.
http://www.ic-network.com/handbook/diet.html#list

Hope this helps you a little bit in starting the diet process! I have been at it since Nov like I said, and still going strong. Alot of the diet changes I have made, I have actually preferred to stick with out of plain just liking it that way! LOL!! :)

Hugs,
Tracey :)

[Babs RN]

Sarah,
I am victim of the evil twins--endo and IC--and played the whole fertility game too. Welcome to the boards, you will find lots of support here.

Hugs,
Barb

[emilyrose197377]

:welcome: to the ICN.

Kim

[SandyRN]

Just wanted to welcome you to a great message board. The people here are caring and understanding, as well as incredibly knowlegable!!! You've come to the right place.

Nice to meet you, Sandy
:welcome:

[cheryl_s]

Hello Sarah Rose,
I too am new to this site but it has been very encouraging so far. I felt like my problems really kicked in when my mother died 4 years ago. She was diagnosed with cancer in July of 01 and passed away Sep 01. That was the worst stress of my life and I haven't been the same since. A lot of people just don't understand when you tell them you have IC and it is even worse when you try to explain Fibromyalgia. I have both and I don't really get much understanding from my husband and family. They all think I should have all the enery I used to have. Thank goodness for sites like this! People that understand make life a little easier.

I am so sorry about the way your ex husband treated you. He'll get his some day! Just don't give up because you never know what good things may be around the bend!

[Sarah Rose]

Hi to allof your wonderful, sweet folks who have responded. I was out of town the last couple of days and couldnt get to the boards to check in.

I have already benefited from the information I have found here. Ive slowly but surely started TRYING to get my diet plan started. I have already found out that Strawberry lemondade is a big NO NO for the bladder. Yikes...its my favorite too.

I wish I could write more today but am headed out for a weekend with the girls, no boyfriends, kids, husbands. :)

I will be checking back Monday. Thanks to all who responded with helpful info.

Have a great weekend.

Sarah

[icsonja]

Sarah, Welcome Home, this is a great place to come to, kick off you shoes (or maybe even your tight panties, canI get an Amen..)
I was born and raised In Gresham, I divoreced a really awful husband up there and found a really great one here in West Texas where I live now.
I have alot of family in the area up there, maybe we know people in common.
Please don't give up on finding a GREAT, note not just good Doctor, you will probably get suggestions from women locally, do your homework too. Google Interstitial Cystitis and use that to help your search too.
Hope you had a great weekend out with the girls, I'm jealous! My nephew has a band that plays up there, he was at the Paris Hotel last week his group is called "The Last Stand of Rock". They are good.
Great to meet you , check in Monday and tell us all about going out. LOL
Sonja