New to this board, and to IC

[Kimberjt]

Hello, my name is Kim, and am 32-years-old. Late October, I was diagnosed with IC. I’ve been battling chronic pelvic pain for years now. About three years ago, under a lap, I was diagnosed with Endometriosis. During the treatment of my Endometriosis, they discovered I have high blood pressure. The high blood pressure has limited the treatment of my Endo a great deal, as I can’t take hormones or my blood pressure shoots up. My blood pressure also shoots up when I'm in pain. Even with the Endo diagnosis, I had a hunch that the doctors were “missing something”. My pain and urinary tract symptoms gradually became more and more severe and happened all month long. It was no longer limited to my cycles, although it is much worse during cycles.

This fall, I went into my doctor in total frustration. The pain was getting unbearable. On top of it, I couldn’t go anywhere in fear of needing to use a bathroom. My once active life has been totally reversed. I quit my job of six years, a year ago. I can’t go on walks anymore, because ten minutes into it I know I’d have to go to the bathroom. I get up so many times during the night that I never feel rested, and am therefore tired all day. Sitting cramped up in a movie theater or a car are torture sessions. Anyway, I went to my doctor with the assumption this was somehow all related to the Endometriosis, and I wanted to schedule a complete hysterectomy (one of the options we had been discussing). During the exam he pushed on my bladder and almost put me through the roof. That led to more questions and eventually a couple weeks later a diagnosis of IC.

With the diagnosis came mixed feelings. As weird as it sounds, we are hoping most of my pain is attributed to IC and not Endometriosis. My blood pressure should not hamper the treatment of IC, as it has with the Endo. Also, I’m hoping that a hysterectomy won’t be necessary after all. I’m so hoping that I’ll finally find some relief. I’m grateful to have a patient husband and loving son, but I know this affects my marriage and my family.

Right now, I take Elmiron three times a day, Prelief, and Vicodin for pain. I also have on order Stephania Root to mix with tea as recommended by someone on another board. I have not dove into the diet, although, I’m avoiding some foods. I find the diet overwhelming. My son has severe food allergies to milk and soy proteins. His diet is complex, and it has taken a lot of effort to master. To throw another diet into the mix and further limit the meals I can prepare is just plain incomprehensible. Thanks for “listening”.

Kim (Des Moines)

[Babs RN]

Kim,
Welcome to the boards! I also had endo and wound up having a hysterectomy at 32 when looking back, I think the IC was revving up too. Our stories sound similiar and I went to college about 3 hours from you! Des Moines is a wonderful city! I went to Creighton in Omaha. My roomate's family was from Boone so we spent alot of time in your fair city. Anyway welcome. You will find caring people here, during good times and bad and a multitude of experiences.


Hugs and :welcome: ,
Barb

[Dixiefireball]

:hi: kim and :welcome: to the ICN family :grouphug:
Yes the diet can be scary but please remember after you find your tigger foods you can add more back to your diet a little at a time.
half the foods on the no no list i can eat and so can other's
also there is a lot of treatments for ic that can help you live a more pain free life. for exp. heparin and marcaine has been a blessing to the that is a cocktail treatment that goes in the bladder just a stronger form of elimron to coat my bladder.
if you haven't already look at this web page www.ic-network.com/handbook you may want to do so you will find a lot of information on the diet and treatments for I.C there.
I do hope that everything gets better for you soon please keep us updated.
sending you hugs and prayers
Rhonda

[johnnarees]

You need to be on an ALKALINE DIET. Type that into your search engine and you will get all kinds of info.

I also live on a tea called "ALKALINIZING TEA." It suppose to have a flavor, i doesn't, it tastes like water.

[SharonA]

:welcome: Kim...

For some of us, what we eat and drink can be triggers. I know the diet seems limiting, but it is important to find out if foods and drinks are a factor in causing your pain. I, for one, discovered that I can eat most foods except citrus. I do not eat onions or garlic but it has nothing to do with IC. Just a stomach problem. Many people here have found relief from their IC symptoms using the diet.

There are a number of treatments available to IC sufferers which can help relieve the pain of IC. There is life with IC. It may take time, but you might be able to find the right treatments that can give you your life back. I did and I hope the same for you. :)

[Katrina]

:welcome:
Complex diet is possibly my worse enemy...adding two or three or four together...big problem.

Non sure if I would wish my pain was from IC rather than endo....but having both is quite painful. I am sorry. I have had a hysterectomy from endo and still have pain.

I am glad you came to this board. We are full of information and support here.
The handbook is very informative!!


http://www.ic-network.com/forum/showthread.php?t=7562 This post is great for painrelief ideas. Have you tried Prelief yet??
I hope you feel pain relief soon!
Good luck figuring out what your family can eat together!!!!!!!!
:grouphug:

[ICNDonna]

I'd like to add another :welcome: to the IC Network. I also have a Des Moines history --- I moved to Oregon from there in 1958. When I lived in Des Moines I worked at Mercy Hospital.

I know the diet can sound pretty overwhelming, but actually it's not too difficult. I don't cook separately for myself, but do things like serving spaghetti separate from the sauce so I can eat mine with something simple, such as butter. You mentioned mixing something with tea --- tea is one of the worst of the bladder irritants.

I hope you will soon find a treatment option that works well for you.

Warm healing thoughts,
Donna

[work it]

:welcome: I just wanted to say hello and so glad you found us. You have received wonderful advice from everyone. I try to stay away from triger foods but sometimes when I am feeling naughty that is where the prelief comes in and helps out. Take care

(icndonna I was born at mercy hospital in des moines in '73...were you there then lol? :biglaugh: )

[Kimberjt]

Wow, I guess it is a small world… quite a few of you lived in or near Des Moines. Des Moines has been home all of my life. Incidentally, to those of you who referenced Mercy Hospital… my grandmother, dad, my son, and I were all born there… four generations! So yes, I’m familiar with Mercy Hospital; although, I prefer Iowa Methodist Hospital. Des Moines is a great place to raise a family, but I could do without winter. My husband moved here from northern Michigan when we married. After tolerating lake effect snow all of his life, he thinks Des Moines’ winters are a piece of cake. I guess I won’t complain.

As for the feedback on the diet… I know I need to get with it. But as I said, my son’s diet is complex. If he eats the wrong foods, his esophagus swells and he gets a mass amount of eosiniphilic cells in his digestive track. We use a lot of tomato-based dishes with his diet, which probably explains why my symptoms got worse when we started his diet. This observation is in hindsight… I did piece it together until I got the diagnosis.

Donna, you mentioned the tea… I read that someone benefited from mixing Stephania Root with Marshmallow Root Tea. It seems like I’ve read people tolerate this kind of tea better than regular tea. I haven’t started it yet. My Stephania Root is in the mail. Maybe I should research things more in depth.

Katrina, I’m sorry to hear your hysterectomy did not resolve your Endo/pain problems. I’ve heard that a hysterectomy is not always a solution for Endometriosis. As long as you have/take hormones, that can trigger the growths. My doctors have talked about doing a complete hysterectomy. I’d have to be on minimal hormones afterwards, because of severe high blood pressure. They’ve also talked about following the hysterectomy with 6 months of Lupron injections to shrink any left behind adhesions. I go back and forth on whether or not I want it done. I do know pain is not the only problem that I have when it comes to Endo. Some days, I think it would be worth it to be rid of the other problems alone. There are days I have a hard time differentiating what is causing my pain… Endo or IC. I know neither are fun, and I would just like my life back.

This board has been helpful. I appreciate those who have offered support and shared their stories. The handbook does look helpful. I will have to read it more in depth. Thanks so much to all of you!

Kim

[traceann]

Hi Kim, I was just reading your post and noticed you said your hubby was from northern Michigan, I am too! I am still in the lower pennisula, though, my dream used to be living in the upper penninsula, but shoot-- trying to find decent docs here is hard enough, not going to put any more wilderness between me and my docs, LOL! :) I am on what the call the "Sunrise Side"-- fancy way to say Lake Huron side!

As far as the diet, I do what Donna does, I make all the same foods for my mom and I (and my sweetie when he's home on weekends) and maybe season my meat of the moment different, and as for pasta, I serve them the tomato sauce and whip up a flavored olive oil sauce for mine! The other day, I took some olive oil, heated it up, added some fresh garlic, salt and basil - I let it cook/steep for a bit and then added some cooked broccoli, peas and carrots and tossed it all with some plain left-over cooked pasta, it was pretty good. I decided to save the left-overs of that for my lunch, weeeeeeell the un-food-challenged person in my house, my mother to be exact, decided she liked it too, and ate my lunch. :( Later she made a comment to me about how yummy it was, I said, "yeah, thanks that was my lunch!" LOL :) And I have found, it really doesn't take me anymore time to do that for myself. The only trouble I run into is on Pasta Sunday's when my man and I are both trying to share the same small stove, lots of "oops" and "sorry's" going on! I have given him the tomato sauce duty, I taught it to him, and my mom says I taguht him well! lol. I figure if he makes it, I can just focus on my "sauce" and won't be tempted to taste!

Take Care, and stay warm!!
Tracey :)

[Kimberjt]

Tracey,

Because of my husband, and his family (they are still there), I've been to Northern Michigan and the UP several times. It is beautiful up there, but I do NOT admire your winters. Last March, we got caught in lake effect snow on our way home. I was on the edge of my seat for about four hours of the drive home! That of course, did not help my need to use the bathroom a gazillion times during the 12+ hour drive!

My husband lived about 45 minutes north of Traverse City, in Mancelona (very small town/village). He was a firefighter for Antrim County. Our dream is to someday have a summer home or a cabin on one of the great lakes. We love the UP... Especially up by Detour Village, Drummond Island, the St. Mary's River, etc. We also love the Tahquamenon Falls. When I come home, I miss the scenery a lot!

Anyway, thanks for your pasta tips. I will keep that in mind. Have you found that you have to elminate ketshup? Just wondering.

Take care,
Kim

[traceann]

Wow, my sweetie and I were just thinking about heading over to Traverse this weekend to visit on e of his best friends, he wanted to get an adapter for my heating pad and pack me up in the Suburban and go, lol. A very good girlfirend of mine has/had family in Mancelona, I will have to ask her if she still does! What a small world!:) I agree, I hate the winters too! We have an ugly day here, rain rain and more rain and it's cold and windy to boot! ACK! What a small world. My fave spot in the U.P. is the Keewenaw pennisula, I just love it, I used to cry when my ex and I would head home from vacation!

I have temporarily given up just about all condiments, and am slowly adding things back in, lol, I have been afraid as of yet to try too many "new" things, been feeling a bit too good the way I am going, LOL!!!! :) So, gosh, who knew I would ever be afraid of ketchup...sounds silly doesn't it???

Tracey :)

[Babs RN]

Kim,
I couldn't take hormones after my hyst because I have clotting disorders that are affected by the estrogen. Previous I was on Lupron 3 times so if you need to talk let me know. Real menopause was fun too.


Hugs,
Barb

[Kimberjt]

Barb,

Did the hysterectomy resolve your Endo problems? Or are you still symptomatic? I've done the Lupron injections already, so I know what they are all about. I gained 30+ pounds while on them six months. I had a doctor willing to put me on Lupron for another three years... No thanks! The Lupron-induced menopause symptoms were a piece a cake for me compared to the pain and other things I have while not on them. But between weight gain and permanent bone loss, I know I don't want to be on them long-term. I'm back and forth on the hysterectomy. I guess one day, I'll have to get off the fence. I'd be interested in knowing if the hysterectomy was beneficial for you.

Take Care,
Kim

[Kimberjt]

Tracey,

Have fun in Traverse! It is a neat town. Minus the winters, I could live there. I've been to Traverse to shop, to go their beachside parks, and I flew into Traverse a couple of times. A heating pad on the go is a new concept for me. I'll have to try that.

Someday I will get brave and give up condiments. What is a hamburger without mayo and ketshup though?

Thanks for the reply!
Kim

[Babs RN]

Kim,
I will never know if the hysterectomy was benefecial for me or not. The Lupron turned me into the Sahara Desert. Since the IC I have gained weight just because I can't do my normal stuff which ticks me off. No one has looked to see if endo was left behind because according to one of the uros I saw since I had stage IV if they didn't get it all, my pituitary puts out enough estrogen to stimulate the growths. I am having a sling for my bladder done soon so they will open me up and I will have a better answer for you. At this point, I don't know if the IC was pre-existing.

Hugs,
Barb

[Kimberjt]

Barb,

I'm sorry to hear you're still having problems after the hysterectomy. I was not aware that the body can produce enough Estrogen to cause more adhesions. I thought once they took the ovaries... that was it. It was my impression that it was the hormones they give you afterwards that you had to worry about. Thanks for sharing that! Do they have to do the sling because things fell after the hysterectomy? My mom had to have her bladder "lifted" this summer, because things moved after her hysterectomy. I added that to my list of why I don't want to have the surgery. Anyway, good luck with your surgery!

I can relate to the weight gain. It has been impossible to lose my Lupron weight. When simply running the vacuum without pain meds lands you in bed, how can you do the things you did before like walking, hiking, etc.? Anyway, I hear where you're coming from.

Hang in there!
Kim

[Babs RN]

Kim,
I have to have the repair to due the vaginal delivery of my only child, Lindsey. I wound up shredded with a fistula(a hole), a rectocele, and a cystocele. The cystocele is the last thing to repair and it is making my IC worse.

Barb

[Kimberjt]

Barb,

Wow... you've been through a lot. Hope your surgery helps.

Take Care,
Kim

[kadi]

Hi Kim,
I am pretty diet limited, but I can eat mayo on my burger & ketchup on my fries if I keep the amounts small and take 2 Prelief (special calcium tablets that neutralize the acids in food) and a glass of milk with it! You might want to check out the Prelief message board. I buy Prelief at Walgreens usually, though I hit a great sale on Amazon.com & bought a zillion bottles that day from them.

Oh, I've also found that I don't miss the condiments so much if I melt a slice of mozzarella on my burger or sandwich.

Welcome to the ICN! I hope you're feeling better soon:)

[VickiB]

Hi Kim & welcome!

It must be frustrating to think of bringing another set of diet rules in to your home where diet is already restricted due to your son! One thing that I find useful is when we have 'IC friendly' meals, I wrap up the left-overs in little packets just for me. Then when I fix a dinner that I shouldn't eat, I pull out my own 'IC/TV Dinner' and zap it in the microwave. I am a big supporter of the IC diet, -it's made a night & day difference in my pain level.

I used to live in Wisconsin on the shore of Lake Michigan, and remember winter and lake effect snows well! Folks here in Idaho complain about winter,...they have no idea what winter can be!

Vicki

[Babs RN]

Kim,
Didn't want to give you the idea either that I am rampant with endo that my pituitary is controlling either. It was brought up as a suggestion because my endo was so severe at the time of my hysterectomy. I had gone through the loss of an ovary 3 years prior to endo and part of the reason I had it was that with the clotting diseases I have the OB/GYN who I trusted very much(I am a nurse and worked with him) told me that if I got pregnant again that either I or the baby or both would likely die. Lindsey deserved a mom, I did hard core Lupron pre-op(I doubled the dose under his care)and then had the surgery. Even with the severe IC and pain, the only thing I have lost is work. I have gained time with Lindsey and the ability to stay home full time which was a dream anyway. Luckily for me, my hubby is in the Army, happened to be promoted at the time things went south and God took care of us. Plus I am starting my own home Longaberger business which has been a dream too. IC is not me and it will not win.

Hugs,
Barb ;)

[Sarojini]

Just wanted to :welcome: you to the ICN... I hope you do try out the diet a little and see if it helps a little. I also hope you find a combination of meds that works well for you! Remember, it might take time, but most of us find the right med (or combination of them) and end up feeling much better. Most ICers are out there living normal lives and yes, many don't think about where the next bathroom is anymore ;) Good luck, and please visit the boards any time you wish for support or information :D

[Kimberjt]

Kadi,

Thanks for the tips. I do take Prelief... just started doing that. I'm glad to hear it can help. The mozzarella idea sounds like a good one!

Take Care,
Kim

[Kimberjt]

Vicki & Jen,

Thanks for the encouraging words and the tips. It is good to know that things can get better. Sometimes I wonder.

Vicki, for my son's diet I often cook in large quantities. I then freeze meals for later as the school can not accomodate his diet - for lunch, he warms up meals in the nurse's microwave. Doing the same for myself would be a good idea! Glad you no longer have to deal with the lake effect snow.

Again, thanks to both of you.

Take care,
Kim

[Kimberjt]

Barb,

Thanks for taking the time to share your story. I'm sorry you were forced to give up your job... I can relate. But like you, I do value the time I have with my son and family. Not every mom has a chance to be home when their kids get out of school. I try and find the positive in everything. On the flip-side, when you're in constant pain, sometimes that becomes difficult.

It sounds like you have been searching for a way to make extra income from home too. Good luck with that!

Best wishes,
Kim

[traceann]

Hey Kim, thanks! I hope I do have fun, a 3-4 hr drive in the wilderness scares me a bit, but heck, I am a northern girl, I can pee in the woods with the best of them! LOL I think I might bring up the "5 gallon bucket" in the back of the Suburban idea again, thank gosh it's not a pick-up truck! LOL. Yeah, leave it to my guy to think of getting some kind of power adapter to plug in my heating pad for travel...lol. Who knows, he may just find something that will work....

Hope you are having a good day!!
Tracey :)