Please help me understand why in sooooo much pain

[sweetpea2555]

Hi! I have been dignosed with painful bladder syndrome with cystitis and hema-something. The doctor said it's a fancy name for IC. He also said I have to remain off work ultil I feel better. I am in alot of pain. I also have fibromyalgia, and the female doctor says my uterus is swollen and my ovaries are 2x their normal size. They won't give me anything for pain because they seem to think I don't need it. The female doctor wants to remove my uterus in a couple years but I don't understand why. I have a son and want another child more than anything. The dr. said I need to get pregnant right away so he can take my uterus before its too late. It hurts too much to have sex. My husband doesn't even want to touch me because he is afraid of hurting me more which is what happens when we have sex. I was told by the dr. this was because I have IC. and I need to learn how to manage my pain. The urine guy wants to take his time waiting now 2 months for meds to work. He acts like he doesn't care if I lose my job. Which I will if I don't go back soon. My bladder seems stronger than before, but the pain is unreal. I don't want to live my life in bed and in pain. The dr. gets frusterated every time I ask for pain meds and I am tierd of going to the ER because they always say I have PID and everything else is in my head. My family doc wants to treat me for mental illness, and I don't think that's the problem. Why whould my insides just swell for no reason? does anyone out there have any advise to help me understand whats going on? Can someone please tell me about your victory of overcoming this? I refuse to give up. this is my first post and am very clueless about what is going on here. :headbang: : :hmm: :help:

[ICNDonna]

:welcome: to the IC Network. I'm very glad you found us.

I believe the term your doctor used is hematuria, which simply means you had (or have) blood in your urine. Many people with IC have this. How was your IC diagnosed?

I do have some suggestions for you. I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you'll find diet information there --- and I suggest you begin an IC diet today. Stopping such things as fruit juices, soda pop, coffee, and tea can help a great deal.

My second suggestion is to see different doctors for second opinions. You should not be left in pain. There are many, many treatment options available for IC. It can take a while to find exactly which ones work best for each individual patient, but most of us do get there.

Sending welcoming hugs,
Donna

[Cricketmk3]

Did the doctor prescribe meds for you? Is he doing anything like DMSO? I think it's ridiculous that he says you have IC but will not give you anything for pain. I think I'd seek another dr who understands IC better and is more compassionate. Do you like this dr or do you feel like you need to see someone else? Also, do you follow the IC diet? Sorry so nosey but I really am trying to help. In my case, I had DMSO treatments and took an antibiotic, uro blue, ultracet, elmiron, and an antidepressant (for pain) at first but only take Elmiron and the antidepressant now. I follow the diet most of the time but when I cheat I don't hurt too badly anymore. Unfortunately, this thing takes time!

[sweetpea2555]

Thank you very much for your replies. this is a long story but here it goes:
I was diagnosed with IC about two months ago. Over the summer I was having alot of pain with sex, so I visited my doctor. They told me I was swollen and had PID but the test showed there was no obvious reason like infection or std so I was sent to a urologist who didn't believe the problem was my bladder. I went back to work still in pain and I couldn't take it anymore in October. I went to the ER thinking I had a terrible UTI and was diagnosed with PID and treated for STD's. All the tests came back neg. so MY female dr. sent me to a different urologist who said he was very confident I had IC and gave me a cystoscope. That's when I was offically diagnosed with IC.Except he called it painful bladder syndrome with cystitis and hematuria. I'm still not sure what the difference is. He said it's basiclly the same thing. I found an article so I cut out my soda and coffee and cut back on my sugar.
As far as getting a different doc, there are two in my area and the one I have is far better than the other. I just wish he was helping more with my pain. What is DMSO? Thats new to me too!! I am also just learing about the IC diet. The doc has me on ditropan XL 10 mg 2x a day so I won't pee on myself as much and it does help. I plan on calling him in the morning due to the pain. He seems to be doing something I just want this awlful pain to stop. I don't want him to think I want the meds to abuse them. I really am in pain. Thanks to this wonderful webstie, I know I'm not alone. Thanks to everyone who took their time to read this and I by no means feel anyone is being nosey. I really appreciate any advice anyone gives me. I refuse to give up and I hope noone out there does either. Together we will overcome this awful condition :)

[kelly McC]

if your doctor wont help with pain control a second opinion could help.
not to discourage you but I saw 4 urologist before my 5th one who has been amazing. There is a list here on the ICN that has listings of doctors
I did a few things to help my doctor understand my pain issue. I started a journal log of pain,voids,eating and activity. I brought my mom and husband with me to describe my symptoms and how it effects my day to day activities. I also made a copy of patients rights to have pain evaluated and treated. I dont have the link maybe someone will have it. I brought it with me along with related articles about IC and the amount of pain it causes.
Good luck
Kelly

[Lise]

I definately think you need to see another urologist so they can prescribe something for the pain. You're far from being mentally ill. There are things they can try for pain, many different treatments you can read about right on this sight and other sights. In the mean time, you can buy AZO-Standard, or Uristat (Pyridium) right over the counter. I find it at the drug store in the feminine section, it's made for bladder infection pain. It's a quick fix for the pain, at least it is for me. Then you can swing over to the antacids section and get some Prelief. Using Prelief with the strict diet (the hardest thing to do on earth for me), then you will probably start to feel better. But still pursue seeing a urologist that will actually try something.

[Sarojini]

:welcome: to the ICN!

You've found a really great place for some info and support... the best on the Web :)

I agree with everyone else. You need to find someone who is willing to treat your pain... it is unfair and inhumane that you are left to suffer in severe pain! Please ask your docs again, or get a referral to someone else, even a pain clinic. There is no need to suffer as there are many, many treatments available to help alleviate the symptoms of IC.

Please check out the Patient Handbook (http://www.ic-network.com/handbook) if you haven't already. This describes the many treatments available and also has tons of info on self help, including the IC Diet that Donna mentioned. Many IC patients are very sensitive to foods and beverages, especially acidic and carbonated things, and it can really help to eliminate these from your diet for a while.

Again, I can't stress enough... you deserve to have your pain treated... please keep pushing until you find something that helps. Keep us updated!!!

[mrich]

I have found that Prelief helps with my IC symptoms. Before I eat
ANYTHING I take 2 pills. I have been doing this now for a month and
my symptoms seem to have improved. You can buy it over the counter at
Walgreens.. Hang in there and continue to come online with us. It is the
only support we can find at times. Especially for me bc noone seems to understand bc it is such an uncomman disease. I would get online and see who specializes in IC so that way they can be more understanding of your condition. :welcome: :welcome: :welcome: :welcome:

[twiggy]

Your pain is "not in your head." Too many of us hear that. A drug by the name of elavil has helped me tremendously with my pain and my life is now much better. Before all I wanted to do was sleep because I couldn't handle the pain. Keep pushing for what you need ... better days are ahead!

[Cricketmk3]

Sweetpea, On the IC-Network homepage, click IC Patient Handbook; Intro to Treatments; then Intravesical Treatments. There you will find an explanation for DMSO. It is a "cocktail" that is injected into your bladder by a catheter. You hold it for 15-30 minutes or as long as you can. This helps in many cases.

[Katrina]

:welcome:
I am sorry you are suffering so much. I so agree that you should find a doc that treats your pain!!!!!!!!!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

[Annie2]

You have received some really good advice from the others. I would just like to repeat some of the things others have said. You are, indeed, entitled to adequate pain relief and hope you will pursue help with this from your current doctors or by finding another physician who is willing to work with you on this.

The are many other things you can do to help yourself. #1 on the list of valuable self-help tools is, as Donna and Sarojini mentioned, to put yourself on the IC diet and follow it very carefully. Within 2-3 weeks of eliminating absolutely all foods that could be irritating your bladder, you may well find your pain level goes way down. It worked for me and helps the vast majority of ICers. For the diet to help you, however, you need to really be very careful about everything you eat. When starting the diet, it helped me to take the diet food list with me when shopping and check the labels of everything I bought to be sure nothing contained an ingredient that could possibly irritate my bladder. I know it is not a fun diet at all. We have to give up many of our favorite foods and beverages. This time of year with so many tempting holiday goodies is especially hard. Most of us do it, however, because we have found out it really does help us.

Also, have you tried using a heating pad or ice packs? Some of us find that helps our pain a great deal. Some prefer heat and some find cold compresses work better. You might want to try both to see which works best for you.

Katrina gave you a link to her list of things that can help you with your pain. She has many more ideas listed there so you will want to check that out.

Hope you will quickly find relief from your IC pain!

Annie

[Betsie]

Boy, you sure could use a break and a much better medical source of information. Everyone here has covered all the important things, so I won't elaborate as it's a lot to take in. the only thing i would add is to PLEASE get yourself a copy of Robert Moldwin, M.D.'s book: copied info from ICN shop here:

Interstitial Cystitis Survival Guide

The Interstitial Cystitis Survival Guide' by Robert Moldwin, MD (2000)

The ICSG is the first book that we recommend to newly diagnosed patients. Written by Robert Moldwin, MD, it is, by far, the most important contribution to the IC community in years. Well written and thoughtfully presented, it is designed to empower readers and ensure sure that they are getting the most appropriate treatment and pain care for their condition. It is an ideal book for physicians and patients who want a thoughtful and organized discussion of IC, patient care, treatment strategies and related research.

His discussion of IC treatment options is the most comprehensive we've seen to date, with explanations on how the treatment is supposed to work as well as known research results and side effects. In addition to the old standards (DMSO, Elmiron & others), he also covers most of the newer proposed treatments (BCG, Capsaicin, etc.). These chapters alone are worth the price of the book.

Robert M. Moldwin, M.D., F.A.C.S., is director of the Interstitial Cystitis Center of the Long Island Jewish Medical Center (LIJMC.)

Publisher: New Harbinger Pages: 250 ISBN 1-57224-218-8

The 'Interstitial Cystitis Survival Guide' is likely the best mass-market book to be published on IC in recent memory. It is destined to be on the shelves of every clinic and every patient seeking guidance. - Jill O, ICN Founder

Price: $13.99

I learned more from this book prior to my DX and much more after upon re-reading. It is the quintessential IC bible and it is available here and at major bookstores.

this helped me formulate my questions and the ability to push past some viewpoints. For instance, my URO on first visit, completely ruled out IC because I did not suffer from nocturia....I pushed for a proper dx and he was quite surprised and humbled when my cysto/hydro showed quite different results.

I am also surprised that DMSO wasn't evven mentioned if all other meds were ignored...anyway, do get a copy of this, its the best.

[dyno]

As I was reading through this post I knew just what I was going to say to you and Betsie read my mind.
That book is great! I was a little uptight when I went to a new urologist a couple years ago and took that book with me. My Dr. is great but we did look something up in it together.
I hope you can get some more info and share it with your Dr. Becoming informed is one of the best things you can do with IC.

[sweetpea2555]

Thank you everyone for your support :) I took your advice and read about the diet. I was craving chocolate and coffee so bad I gave in. I havent had either for a month until the other day. I haven't been able to do much since. I never would have guessed that was the problem. I have been in alot of pain-that hasn't changed much. I tried calling the doctor and can't get an answer-they must be on vacation. Anyway, I think I passed about 5 kidney stones last night and I felt alot better until a couple hours ago, now I'm in pain again. Heat does help out alot and I plan on getting some Prelief as soon as I can. I really don't know of another doctor to try without a really long drive. The drive might be well worth it. In the mean time, I'm gonna take a look at the pain management post and pray something helps. Thanks again for your support. This website is the best. :angel: I plan on mentioning it to the nurse at the doctor she never heard of the IC diet! :loco: :biglaugh: Monday, I requested information on it and she said I don't know of any special diet.
Thanks again and MERRY CHRISTMAS!

[sweetpea2555]

Hello everyone I just wanted to give you an update. I finally got some help from the doctor. They said they are going to try some new treatments. They were on vacation and the nurse that didn't know about the IC diet was a fill-in. The regular nurse did give me 800mg ibuprofen for pain until my visit. Thank you all for your support. I have learned some very helpful tips here. Everyone has given some great advice that is helping me keep going through this awful IC. Your support is very much appreciated! :)

[trytosmile]

:welcome: Sweetpea ...

Glad to here you are getting some help. I agree with everyone else, keep trying different doctors until you get somebody you are comfortable with. There are so many treatments out there you can try. Unfortunate for me I'm on my 18th different one and nothing has been real effective. The one I'm on is OK, but not where I wish it could be. I suffer from terrible pain myself and yes the pain can get very bad. My advice is "try" to keep yourself calm. I think I can speak for myself and others and that is stress only brings on more pain. Keeping out stress, easier said than done. Tell me how to avoid stress when in so much pain and we'd all be much happier. I was almost 2 years before they finally gave me a final diagnoses of IC but during the two years prior I was being treated as if it was IC. I myself have been to 3 different urologists. Travelled 7 hours to see one. Like yourself very few GOOD ones in my area. I had to go to one for an "evaluation" for my insurance company as I am currently off work, going on two years now. His first response to me was "I really don't know alot about the disease". Now how does one make a fair assessment saying that. You just have to shake your head sometimes. I am new to this email tool and in just the week I've been using it, I have received so many nice emails, well wishes and good advice. It is nice to be able to talk to somebody that "knows" your pain. Keep smilen, I know it is hard. Believe me I know but you have too, don't let it get the better of you !!!!!!!!!! :grouphug:

[VickiB]

Hi Sweetpea, and welcome to ICN!

I'm glad to hear your doctor is going to try some new treatments. It makes me angry when I hear that 'it's all in your head' stuff. -I was told that, as well as many others here! It amazes me how easily the pain of IC is brushed off as unimportant. You can bet if they spent one hour suffering they'd have their script pad out & be writing away!

I do want you to know that many of us have found treatments that work, and are back living the lives that at one point seemed impossible. Please do try the IC diet! And most of all, don't give up! I did, after seeing a number of doctors who weren't able to help me, and suffered for many years untreated. I didn't know to press on! Educate yourself on IC and possible treatments, so that you can be a team player in your medical care.

I do hope you're feeling better soon!

Vicki

[Ginny]

Sweetpea,
Have you looked into Vulvodynia? Do some reading. I wonder if you have that also.

Ginny

[SharonA]

Sweetpea...Sorry this is late, but I do want to :welcome: you to the ICN. As you have already discovered, this is a great place to find information, get answers to your questions and have contact with people who "know" how and what you are feeling.

Like VickieB has already said, there are many of us who, after some time, have found treatments that help with the symptoms. I am one of these fortunate people. After experiencing the horrible pain of IC for several months, I was able to find the right treatments for me. I am now able to life a pretty normal life with very few symptoms. I wish I could tell you that what has helped me will definitely do it for you, also. That is not necessarily so. We all react differently to many different meds and treatments. The important thing for you to remember is there is life with IC and there is hope. Never give up trying to find the right doctor and the right treatments for you. It is possible. :) :)