Finally moving on

[edc]

Hi everyone - this is my first time using this support chat room, or any chat room, so my deepest apologies if this sounds silly! I was diagnosed with IC 1 month ago, after 5 long months of suffering, and one lousy urologist. It was a PA that finally diagnosed me, and started me on amitriptyline. I was SO HAPPY to get a diagnosis, and within 3 days, my symptoms were barely there. My quality of life greatly increased, and I was one happy girl. Then, 3 weeks after I was diagnosed, I went out of town for 2 nights, and forgot my amitriptyline. By the time I got home, I was stuck in bed with pain, pain, pain. I suddenly got VERY depressed. I realized that this is chronic, and there is no cure. I cried for days, while I researched more and more articles about IC. I am a registered nurse, currently working on my masters degree, so I know the literature. The more I read, the more I cried. I think after a diagnosis you go through a great high, and then a period of morning. You morn for the quality of life you used to have, and you morn for the days you didn't feel so much pain. When you could enjoy a bottle of wine with your spouse or friend, and not pay for it the next day. When you didn't have to take a sleeping pill everynight, inorder to feel no pain the next day. But now I am finally moving on. Don't get me wrong, I am still bummed out, but it's not cancer...and it's not diabetes...and it's not some horrible neurologic disease. I have seen people suffer, and I have seen chronic pain. But I am going to fight back, and I am not going to be a statistic.

I am looking forward to trying hydrodistention. Can someone please tell me their experience with hydrodistention...I am hoping it was a positive one! :bow:

Liz

[Sarojini]

:welcome: to the ICN!

I'm sorry to hear you have IC, but I am really glad you found the boards. There's a lot of information here; and most of all, there is a lot of support. We all care about each other here, and want you to know you're not alone :)

As for the hydro, I had one in March. It went really well, but I did not get lasting relief from the procedure, unfortunately (only about 2-3 weeks worth). However, there are many people on the boards who swear by hydros and use them as first-line treatment... for example, "ICNDonna" has had many hydros and can fill you in on the details when she sees this post. Also, "Babs RN" finds a lot of relief after a hydro.

I'm sure they will reply to you soon!

Take care of yourself :)

[edc]

Thanks Jen! In all the literature I read, hydro is the first-line treatment, as well as the only diagnostic test. Unfortunately, my doctor didn't do hydro when he did my cysto (one of the many reasons I am not going back to him). The elavil is working, but I hate that it only treats the symptoms, and doesn't make any anatomical changes. What works for you? What treatment are you using? I can read all the studies in the world, but it's better to hear it from other IC patients.
Liz

[SharonA]

:hi: Liz and :welcome: I am so glad you made you way here. I hope we can help you. There are a lot of people here who are very helpful and supportive.

The only hydro I have had was the one that was used to dx me. Like Jen already told you, there are some who come here for whom this procedure is part of their treatment for IC.

I have found that Elavil works for me and has given me back a quality of life very close to what I had before the symptoms of IC came upon me very suddenly in August 2001.

Yes, the dx of a chronic pain disease like IC can make you go into a tail spin and cause great mental and emotional stress. It sounds like you have passed that point and have grabbed hold of your inner strength and will not let IC win. Good for you.:thumbsup: :)

[edc]

Thanks Sharon - I am glad you have found comfort in Elavil - I have as well. I am on 25 mg, and it's doing the trick. I'm still having a hard time with the lifestyle though. Last night I went to Jazz in the Park (I live in Milwaukee) with my wonderful husband, and I had 2 glasses of wine. Let's just say the elavil isn't doing the trick today - I am still pretty uncomfortable. I just miss my old life. But, as I said before, it's not cancer, and it certainly is not going to kill me.
Are there ever chats about depression? All the literature I read discusses the high incidence of depression in IC patients. A lot of it related to difficulty with sexuality. I have a very supportive husband, but sometimes I am too uncomfortable to be with him like I want to. I'm wondering if this is something other people have experienced or read about.
Thanks you so much for your support - this condition is hard for even the most supportive family and friends to understand. Thanks.
Liz

[SharonA]

Liz...Hi back at ya.

I also take 25mg of Elavil at bedtime.

My father and his family were from Milwaukee. I still have an Uncle and a Cousin who live in that area. I have not been up there in a long time. I love Wisconsin. Until I moved from California to Tennessee, WI was my very favorite state. It is so beautiful up there. I remember going on vacation to visit with my Grandparents and watching for the first "red" barn. It was a game I played. I always felt a sense of peace and being home when I saw the first one. Oh the memories....I can still smell the Rhubarb Pie that my Grandmother used to make. Yummmmmmmmm

Back to real life...Probaby couldn't eat that pie any longer anyway.

There is a section about depression on the main forum page. There are a lot of posts about that because, like you said, it is a big problem for some of us.

There is also a place where sexuality is talked about. Again, that is a big problem for a lot of us. Yes, IC does make it difficult to be intimate with the one you love. :(

IC takes away so many of the pleasures of life...like sex and Rhubarb Pie :shake: :(

[Sarojini]

Hi Liz,

Like Sharon, I only had the one hydro (that's how I was diagnosed, too). I have also tried DMSO instills. I had 10 of those, and at first they seemed to help a little, but eventually they just made my pain worse and worse... so I quit them. I tried Ditropan, Detrol, and Urispas for the frequency/urgency, but none of those were any good, as they all made my urinary retention so bad I had to learn how to catheterize myself... while I still need to do that occasionally, it's much better now that I am off the "gotta go right now drugs" :)

So, now I am on Elmiron (600mg per day), and will have been on it 6 months as of Sept. 4. I believe it helps, particularly with the intense urgency I used to have. In addition, I take Flomax (an alpha blocker that relaxes the bladder neck), Atarax (25 mg at night), MS-Contin for pain (15mg 2x a day with option to take 30 mg 2x a day if pain is really bad), Lortab 7.5's for breathrough pain, and Pyridium as needed for urethral burning.

By the way, my part of my hubby's family lives in Wisconsin, and we were up there visiting in July! His dad lives in Stevens Point, and his uncle lives in Milwaukee. :) His grandfather used to live in Stevens Point too, but unfortunately he passed away recently.

[ICNDonna]

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

I recommend reading the Patient Handbook at http://www.ic-network.com/handbook for some help with diet. The diet is a challenge, but it's well worth the effort.

I am one who does benefit from hydrodistention and I have had them done at intervals since my diagnosis in 1975. It's the thing that has helped me most. When I have one done, I spend a night in the hospital with a continuous irrigation of SoluCortef. That seems to help considerably with my recovery. My relief following a hydro lasts anywhere from six months to almost two years.

I wouldn't change uros because of doing a cysto without the hydro --- it's the usual way to make a diagnosis --- ruling out the obvious first before putting you through hospitalization and anesthesia.

I choose spinal anesthesia for mine because I have a tendency to become extremely nauseated with generals.

And --- it is possible to have a satisfying sex relationship with IC. It takes a lot of experimenting, open communication --- and extra lubrication --- but definitely worth the effort. I think my husband and I are actually closer than we would be if I had not developed IC.

I only have one more thing to say and that is that there is life with IC. It may take a while to find which treatment options work best for you and which foods and drinks you need to avoid, but most of us get there --- and most of us feel good most of the time.

Sending warm welcoming hugs,
Donna

[vm]

But I am going to fight back, and I am not going to be a statistic.

You go, girl! :) That has always been my attitude, also. Now, I did have bad days when I did not feel like a fighter, but I was determined to be a good patient and do all I could to find relief.

The only hydrodistension I had was the one to diagnose me. It didn't give me relief - but it gave me my diagnosis, which was a good thing.

Hope to see you around - glad you found us. :)

[Iris]

Hi Liz and welcome, I am another ICer who is on Elavil 25 mgm at night, and it has really helped me to lead an almost normal lifestyle. I have only had the cysto/hydrodistension, and that was when I was finally diagnosed with what I had been going through the previous five months before, so I know how you feel. This is a great place to be for support, information, help, and lots of compassion from the gals here on the boards, we also have a few guys as well. Once again welcome and let us know how you are doing, welcoming hug Iris. :hi: :welcome: :grouphug: :flower:

[edc]

Wow - thank you all SO MUCH! I have tears reading all your thoughtful letters! It is so wonderful to know it's not me. I have had too many days where I feel alone (sitting on the pot!), and it's nice to have this outlet. And it doesn't mean my family isn't supportive, because they have put so much money and effort into a diagnosis and treatment, but it's great to hear other IC experiences. Thanks!
Donna - as for my Uro, I had gone to him 4 or 5 times, questioning if I had IC. My brother-in-law is a urologist, and he kept telling me it sounded like IC. I had negative urine cultures over and over, and still no diagnosis. Even after my cysto, he just told me to take the macrobid post-coital. He just didn't hear me. Anyway, I went to his PA one day, she started me on Elavil, and within 4 days, I felt better. I guess I'm just a little bitter that I was in so much pain for so long, when one little pill could increase my quality of life so easily! Your success with hydro's is very encouraging. I like the idea of changing the endothelial layer - right now I feel like I am just masking symptoms.
And thanks for the Wisconsin love! It really is a great state. I have lived in Madison, went to nursing school in Eau Claire, and am now living with my husband and getting my masters in Milwaukee. But, don't ask me how I feel about the state in the winter...that's a whole different story!
Thanks again - I am so glad I found this website!
Liz

[edc]

Oh, one more thing - I have two great articles on IC and sexual intimacy:

1) Kellogg-Spadt, S., Albaugh, J. (2002). Intimacy and bladder pain: Helping women reclaim sexuality. Urologic Nursing, vol. 22, 355-356.
2) Webster, D. (1996). Sex, lies, and stereotypes: Women and interstitial cystitis. Journal of Sex Research, vol 33, 197-204.

My husband and I read them together and it helped!

Also, I am 26 years old. How old were some of you when diagnosed. Sometimes I feel really sorry for myself...who wants a chronic condition at 26! Who wants a chronic condition ever!

Liz

[Babs RN]

Liz,
I am a nurse as well--12 years. I got my degree from Creighton University and have been an ER Nurse for most of that. I have seen people suffer too..and I enjoyed control over my body and love being a nurse. I had to cut back working as of June to the point that I work very infrequently. I can't stand on my feet safely for 12 hours anymore. Plus, my meds make me sleepy so of course I can't take them at work...and you know what they say about getting on pain before it becomes severe. I have always worked full time and while staying home with my 3 year old is awesome, I feel like I've lost my identity as a nurse and am placing financial burdens on my family. I've read lots of literature also, and sometimes it stinks to know too much. I diagnose myself way too much and decide I don't want to be a burden because having been in the ER business so long, I know what people say behind patient's backs at the nursing station. Feel free to unload on me anytime, I have been diagnosed since last year and get complete relief from the hydros. Take care and know I am here for you both as a human being and a nurse.

Hugs,
Barb

[Babs RN]

OOPS!
I am on Elmiron 100mg TID, Trazadone 100mg QHS, Tequin 400mg QD(I have had issue with recurrent UTIs and a cystocele), Percocet 7.5/325 as needed, Phenergan 50 mg as needed and po Demerol for breakthrough pain. I was diagnosed when I was 32 and I'll be 34 on October 15.

Hugs,
Barb

[KEC]

I had a cysto/hydro done yesterday and I had what they call twilight sleep. You are not aware what is going on but you dont get sick afterwards. I love it. I had it years ago whon I had my wisdom teeth cut out. Your recovery time is alot faster and you can go home sooner. So far my bladder feels pretty good and I'm hoping I get some long relief from it. good luck Kathy

[Sarojini]

Hey again Liz...

I was 29 when I was diagnosed with IC... I was diagnosed about a month before my 30th b-day. It's pretty stinky to be diagnosed so young, but for the most part I deal with it and find ways to cope :) You sound like you're a pretty strong woman too, and you sound like you're determined to find ways to cope too... that's fabulous, and you'll do just great :)

[Dixiefireball]

:hi: and :welcome: to the ICN family sorry i'm running a little late in my welcome to you.
I found a lot of relief with heparin and marcaine treatments.
sending you hugs and prayers
Rhonda

[arcticfox]

EDC,

Welcome! Happy to hear that you found us! You must have felt some relief at finding this board and know that you are not alone. It makes things a little easier.

A lot of the people on this network, have a wealth of information and experiences that will help you deal with IC stuff. It has helped me. I know that I can come on this message board and not be shy about asking or discussing anything, cause I know that someone out there has experienced the same thing or something similar.

I having a bad day today, but I am not going to let it get me down. Not today! NO WAY!

Anyways, again, welcome to the IC network.

Lynn :welcome:

[edc]

I know I've said this already, but thank you all so much for the welcomes! I showed my husband, and he's so glad I found you!
Chronic pain is a scary thing...I am learning. I was quite depressed last week, continuous crying. I read so many articles with so many poor outcomes, and I was convinced my life would never be the same. Hearing all of you tell me your stories is so amazing. Each one of you is living your lives somewhere...having relationships with friends and family, taking part in your community, and fulfilling your life. Thanks for reminding me that my life is not just IC!
Liz :kiss: :kiss: :kiss:

[Katrina]

:hi: Liz, and :welcome: :welcome: sorry you have IC but glad you found us!...Sorry I seem to be a bit late in welcoming you.....that being so there seems to be little left to say at this time....let me know if there is anything I can do for you or if you need anyhelp.

:kiss: :kiss: :kiss:

[~*~Christine~*~]

Hi Liz, welcome to the board :hi:
You have gotten some excellent advice here already so I'll just tell you that I had my hydro done when I was 16 and it really only hurt to pee the first time when it was over and I'm the biggest pain wuss ever so trust me! ; )

[VickiB]

Hi Liz,

As an ex-Wisconsinite I wanted to add another (late) welcome! And no, I don't miss those winters one bit!

I like your attitude towards IC. This disease is a great example of how 'life isn't fair', but for many of us we find ways to deal with it. For me, diet makes all the difference in the world. While I miss many of the foods I used to enjoy, I sure don't miss the pain I was often in because of them!

Wishing you pain-free days!

Vicki

[MichelleM]

Liz,
I'm pretty new here, without much experience to share. I am 27, newly married and I was just diagnosed with IC a couple months ago. Since then I had one horrendous urologist who actually made me feel helpless and depressed. She didn't hear me at all when I tried to tell her what was happening with me. Plus, I've worried a lot how my husband will deal with sex problems...BUT, I found a new doctor who really listens and makes me feel empowered, and that has made all the difference in the world! Unfortunately I'm moving to L.A. soon, so I'll be starting the search for a good urologist all over...Anyway, I know how you feel and don't settle for a subpar doctor!
MichelleM

[theclownster]

Hi Liz! I too wanted to add my warm welcome. I was officially diagnosed when I was 27 - I'm 28 now. I probably had intermittent symptoms since the age of 24 or 25 - but never really pursued it because I thought it was in my head or something. I would mention it in passing with my doctor and he'd do a urinalysis and not find much - so I'd just say okay. Last fall I decided enough was enough and I told him how serious it had become. He was completely supportive and put me in touch with my first urologist. Immediately after seeing her, she told me she thought I had IC. Unfortunately, she was not the doctor for me (to make a long story short).

AT the beginning of this year, I started to see a new urologist. He's great and I'm on meds that seem to be helping quite a bit. I take elavil & atarax 25mg at bedtime. I also take ditropan xl in the evening ( the doctor just increased the dosage to 15mg - but I think I might want to go back to 10mg). I also use Prelief with every meal and when taking meds. If you haven't heard of Prelief yet it's an over the counter antacid type supplement that removes the acid in the food as you eat it. I've found it to have helped my overall comfort tremendously.

It sounds like you are a courageous person who is determined to be comfortable in life again. It does take time - a little bit of trial and error - but there does come a time when life gets to a "new normal". Yes we grieve our old life - but find ourselves very greatful that we have our new one. It's almost better in some ways for me. I know not to take things in life for grantid and can also empathize with others who have more serious chronic illnesses. In many ways I feel blessed.

May you find much relief in the near future. Take Care!

Warm Regards~
Jennifer

[mayray518]

Finding a good doc is so important. I finally have a good one now after years. he is compassionate and caring. Doesnt have all the answers about IC but listens to what I say and have been through.

[pattig89]

I was diagnosed with IC a year ago I am 52 married with an 18 yr. old son. I too]
didn't like my uro for awhile he never seemed like he was listening to what I was
saying. So one day when I was having a DMSO i mentioned to the nurse how
uncomfortable I was with this dr. and she referred me to another one in the same
office. It turned out he was wonderful, has many patients with ic and seems
to understand what we go through. He is young and goes to alot of conferences
on the new and updated meds relating to ic so i feel very confident with his opinion.
Right now I am only have monthly DMSO's he wants to see how I do than he will
probably introduce me to an oral med he mentioned Elmiron, so we will see how it
goes. So I know how important it is to like your uro you go to see. Good luck
with that.
Patti G

[pattig89]

I am new to the chat room also. You are all very informative and thank god
there is this message board. I am learning alot from all of you guys. I also
get depressed from the ic and feel it has changed my life so very very much. I
am still trying to figure out what is the best meds for me llike someone said it
is all trial and error. My name is Patti I live in Boston, Mass. and god bless you all.