I was in denial,please help me understand

[melissahumm59]

I introduced myself earlier and told you all that my gyno dx IC with a test. I still was not convinced that it was the source of all my pain. I just had a laproscopy for endo,and to my surprise I did not have it. I would have bet on my life that my pain was from endo. I have IBS and IC. I really don't have the severe urges to urinate like most,so that really threw me off. I have pain and burning. It seems worse in the evening. I am going to try diet on Monday. I still am in denial,but am taking the Elmrin(or whatever). I was begging for a hysterectomy and now I am so confused. Can I really be in this much pain from my bladder!! Can my pelvic bloating and distention be from Ic. Oh so confusing!!!!

[sandramac]

Yes it can hon! to all the above .I experience the same, but notice in my case its more hormonal issue, during ovolation and pre period.In my case i do get alot of burning in the left lower side ,And when i was dio with a hydro i did have a large hunners on the left side of my bladder. hope you find some relief! best of luck Sandra:cat: :cat: :cat:

[Dixiefireball]

Melissa,
the pain your having can very much be all coming from the bladder area. IC is a awful pain some icer has even been bedridden from the disease. (depends on the person and how bad their IC is and if they can get it under control)
they are no quick fixes to IC. All treatments take time. You have to have patient.

The IC diet is the best place to start that way you have more control. If the ic diet helps you. Hopefully you want have to be on a lot of high price medicines. (that would be a plus!) Unless you are having a lot of gyn problems. I would really sujest that you hold off on the hy. Yes it can be helpful to a point but want take away pelvic pain. all it really help on me was i didn't get awful cramps the week before and the week of my peroid and real UTI's but i'm not your avg. run in the mill icer.
if you haven't already read the IC handbook that is a very good place to start www.ic-network.com/handbook its also important that you go ahead and tell yourself you are an icer and need to face this. that can be hard at first. I was the same way so was many others, but as soon as you can start faceing the fact you have IC and being treated for it the sooner you can find hopefully find the right treatment plan to go into remission to start feeling better.
Yes their is remission out their. Sadly you don't hear from a lot of the icer who are in remission because they are doing so well they don't post offen, but they are out their. I was once in remission for eighteen glory mths.
Keep your chin up high and believe in yourself, believe in your Dr's if you don't believe in your Dr's and feel that trust you need to feel between you and them its time to find a new Dr. or Dr's.
remember we are here for you, We do care, we do understand. Please keep us posted on how your doing. Ask all the question you need too.

sending you hugs and prayers for better days ahead.
Rhonda

[SharonA]

I'm so sorry, Melissa. Finding out you have IC is a very difficult thing. I had never heard of it and thought that, with a few drugs, all of it would go away. We have all been where you are right now...in the confusion and questioning phase. What is this and what can I do to help me?

For me, my first few months were spent in extreme pain. The bladder and urethra felt like they were on fire. I was also worse at night. In the morning, I felt like nothing was wrong. But, beginning around noon, my symptoms would begin to show up and grow worse and worse until bed time, when I would curl up in the fetal position and slowly go to sleep. Only to wake up and start the cycle all over again. I thought my life was over. I thought I would never feel normal ever again. I thought I was doomed to be in that kind of pain for the rest of my life.

Then I found a doctor who understood just how painful IC can be. She told me it was one of the most painful diseases out there. She said that she would do everything she could to help. She started me on Elavil at our first meeting. It actually began to work the very next day to help relieve some of my symptoms. Over time, she increased my dosage from 10mg to 50mg. and then back down to 25mg. That is where I am now, on 25mg. I have been taking this med since Dec. 2001. I now have my life back. I can do most anything I want to do when I want to do it. I still have to watch what I eat and drink (like extra spicy and citrus foods/drinks. I can't drink a lot of coffee, but can handle one cup in the morning with a Prelief Tab. I do not drink soda.

I do have an ocassional flare, but they are nothing close to the pain I had before taking Elavil. I have learned to drink plenty of water to dilute and flush out the offending urine in my bladder as quickly as I can. Then I treat my bladder with a lot of TLC and only eat bland food and drink water until the flare is gone. They usually last from a few hours to over night. Usually when I wake up in the morning, the flare is gone.

There are a lot of meds/treatments out there for us. Your Diet is your #1 treatment. It is very important to treat your bladder gently until it has a chance to calm down. Along with Diet, you can then begin to find meds/and other treatments that can help. Take a look at the Patient Handbook. You can find the link to it at the top of this page. You will find many things that can help you regain your life in it. Don't give up...keep on trying until you find what works for you.

I hope you find help quickly and begin to enjoy your life once again. It is possible. :) :) :)

[Katrina]

:welcome: to the ICN!
Yes....the bladder can cause very very very severe pain. I had endo and had it bad enough to have a hysterectomy....and recovering from surgery, endo, Ulcerative colitis, and pretty much everything didn't cause as much pain for me as IC has but luckily it is treatable!!!! I am a lot better!

pelvic bloating...known as the IC bladder....it is from mass cells...an antihistamine may help!

burning.....how do you feel after a bath? could be from acidic urine.

:grouphug: Don't worry you are not alone and things do get a lot better. You would be surprised how much self helps and diet can make a difference.

I know there is a lot to learn about IC but don't worry your not alone.....
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

[ihurttoo]

http://www.ic-network.com/images/presidentsaward2006.jpg
06/20/2006 - Yet again, Amy, a very well written and well deserved posting! I love the fact that you reminded her, and us all, that we are better off knowing what we have. That today, we have never been more prepared to deal with whatever happens in our lives for truly we are one day older and one day wiser. - Jill O.

I am so sorry you are facing this. I know you are scared. Who wouldnt be? But you must remember that you are actually better off today than you were yesterday. Because yesterday, you were in the same pain, and had no idea WHAT was wrong, nor how to fix it. But today, you know what is wrong, and are on the road to getting better! You also have the advantage of having this website to help guide you through treatments and meds, and to get to know others who are going thru the same thing. I didnt find this place until this past January.....4 yrs after I was d/xed!! But, I can tell you, I have learned WAY more since coming here than I ever learned in 4 yrs on my own, and I read every book in every library at our university and public library on the subject, and bought every one that they didnt have, plus I had seen 7 drs!! So, please immerse yourself in this site, and read everything you can!

The biggest mistakes that I made early on was staying with drs too long when they werent helping me. They would give me a medicine and say, "Take this every day, and come back and see me in 3 months." That is not acceptable. Lots of meds need to be titered up on dosages, or even switched for other things. I also didnt push the pain meds thing, for fear I'd look like a drug seeker. They told me that they dont give them to IC patients, and I believed them. So, I thought I was just a freak, or weak, or something. Then, I came here, and my eyes were opened. The ladies here told me to ask for a referral to a pain clinic, and it has saved my life. I would be dead by now if I hadnt gone there. I LITERALLY couldnt take the pain anymore!! Now, I am on daily pain meds, along with my other meds, and have finally gotten some quality of life back, after being bedridden for 4 yrs!

I hope you get your back too. I do however think that you need to try somethings in addition to Elmiron. First, I think the diet is a great start. Please remember that it can take anywhere from 2 weeks to a month to notice a differance with diet. It helps enormously to keep a journal for IC. There are many reasons for this. #1) It will help you find your personal trigger foods. (They are similar for many of us, but not the same for all of us.) Write down everything you eat. And if your pain intensifies after eating something, (whether instantly or hours later, or the next day), write that down too. #2) An IC journal is also helpful to show your dr, so he can see how your pain varies throughout the day, and what foods and activites make it better and worse. This will help your dr better access what meds and or treatments could be useful for you. (For example: If sex is one of your triggers, your dr might prescribe B&0 --Belladonna and Opium suppositories for you to use to relax your pelvic floor to prevent this pain.) If certain excersizes trigger you, he may send you to a physical therapist to help you retrain those muscles, etc.... 3) An IC journal also will help if you ever need to file for disabliity. It will help prove your case. 4) It will help you to see what meds are working and which ones arent. 5) It will help to give you hope, as you look back on things and see how far you have come.

After you get the diet and journal under control, I think you should talk to your dr about adding a few more meds to help you for a while, because Elmiron can take 6mo or longer to work. As the others have mentioned, Elavil is also a med many ICer take. It is an antidepressant, but it also helps with IC pain somewhat. Lots of ICers also take Pyridium for the burning and urgency. All of those meds can be taken together. Sometimes they also can instill the Elmrion or other meds into the bladder to jumpstart things.

One other thing that I strongly recommend would be to get a copy of a book by Dr. Robert Moldwin called "The Interstital Cystitis Survival Guide". It is an awesome book, and was extremely informative.

I hope that you start to feeling better soon. If you have any questions, please feel free to ask us anything. There is nothing to embarrassing to ask here. We have seen it all, and (experianced most of it!) But, if you dont feel comfortable, please feel free to pm me anytime. By the way, I almost forgot, WELCOME TO THE ICN!!! We are glad to have you! Hugs, Amy

[ICNDonna]

My suggestion would be to begin the diet today --- you could already be feeling a bit better by Monday if you avoid potential irritants beginning right now. The sooner you begin, the sooner you will feel better.

Warm encouraging hugs,
Donna

[Sarojini]

I agree with Donna -- don't wait to start the diet! It can make a HUGE difference in how you feel. And yes, all that pain you feel can indeed come from your bladder. I know it's hard to believe that a silly little organ like a bladder could suddenly turn against you, but it can... and it can be quite painful when it does. There are many patients here on the boards who don't have frequency or urgency, simply pain -- we are all different.

I'm so sorry you were dx'd with IC :( However, there is still life with it! Once you come to terms with the diagnosis (and it sounds like you are beginning to, since you came back to the site), the best thing is to read all about IC AND talk to your doctor. The two of you can create a treatment plan to try out... and if at first you don't succeed, try something else! Most of us have tried several things before we found what works. :grouphug:

[Flowerchild1978]

The ladies have gave you all great advice. You don't have to have urgency and frequency to have ic. I don't and I have ic.

[dancemomof2]

Sorry about all your trouble. I have had endo 3 times and the pain with that and the IC pain is so similar it is scary. I was actually convinced my endo was raging when we finally discovered the IC. The diet is a great place to start when searching for your IC treatment.

[callie0767]

i just wanted to say hi. the others have given very good advice. i also encourage you to start the diet soon. i don't think diet didn't help me much but i still use it . elmiren is a good start. i hope you feel better soon.
courtenay

[Briza]

I introduced myself earlier and told you all that my gyno dx IC with a test. I still was not convinced that it was the source of all my pain. I just had a laproscopy for endo,and to my surprise I did not have it. I would have bet on my life that my pain was from endo. I have IBS and IC. I really don't have the severe urges to urinate like most,so that really threw me off. I have pain and burning. It seems worse in the evening. I am going to try diet on Monday. I still am in denial,but am taking the Elmrin(or whatever). I was begging for a hysterectomy and now I am so confused. Can I really be in this much pain from my bladder!! Can my pelvic bloating and distention be from Ic. Oh so confusing!!!!

When my IC symptoms first started, that first year before dx I had NO idea that all that pelvic pain and burning was originating in my bladder, even though I did have frequency. Good luck with the diet. It can make a huge difference. Just remember that you may not see immediate relief, especially if you are in constant pain. Once your symptoms are under control you may not need to restrict yourself so much once you determine which foods are your main triggers.

Abdominal bloating (IC belly) is a common symptom. I don't get it much anymore, but do know how uncomfortable that can be!

There are other faster-acting meds that you can discuss with your doctor: elavil, atarax, and pyridium are a few that many of us use in addition to elmiron, to help with pain, burning, and frequency.

Best wishes. Hope you get some relief soon.

[kennedy]

Hi Melissa,

I joined a little while back, but I didn't actually begin utilizing the resources here until recently so I'm really a newbie too. In the last week or so, I've spent alot of time on here mostly reading. I'm amazed at how much better I feel and how much more I know. I feel less scared and more confident. These women are amazing and have made a huge difference for me already. Hopefully, you'll find what you are looking for too.

When I first was dx'd with IC, my flares would bother not only my baldder but carry over into my vagina. It would feel like a cramping or horrible pinching really far inside. I thought I had some sort of gyno problem. I really wasn't up on any "chick" problems because being so young I had never had any problems. (knock on wood). I went to my ob/gyn and asked her about this and she said that being that the bladder is so close to the vagina, when you have a flare all of the tissues down there are super-sensitive. So, the vagina will mimick some of the same symptoms as the bladder. Usually, an ice pack helps some.
Does this sound pretty accurate to everyone?
Maybe this explains some of your gyno problems. Or not. It doesn't hurt to get them checked out for peace of mind.
Good luck!!!
Kennedy

[Katrina]

Your gyno is right but I would describe it differently. Usually if the pain from your bladder is traveling to your vagina it is because of muscle tightness and nerves (PFD)....ice would help as would a bath and learning to relax those muscles (which is extra hard when your bladder is flaring because it is much more natural to tighten up :grouphug:

[kennedy]

Hi Katrina,

That is really useful infomation!! Thank you!! I have often had these symptoms without even having the bladder symptoms and just assumed that it was what my gyno had said. So, how would you go about getting dx'd and treated for PFD? Through your uro? Or gyno?

Thanks a bunch!! :bow:

Kennedy

[Katrina]

Many doctors can but usually you are sent to a physical therapist to be sure. Both my Uro and gyno both said I had it.........did have urodynamics?
Diagnosing PFD is based on symptoms, examining point tenderness on rectal/pelvic abnormalities, urine flow and other causes of these problems. Often a urinary flow test is done along with testing if the patient strains and if there is retention.
Symptoms of PFD:
• Urinary frequency and/or urgency
• Urinary retention
• Lower back pain(pain is often deep, sharp, stinging)
• Constipation
• Pain associated with sexual intercourse (during and after)
• Decreased urinary flow
• Pelvic pain (pain is often deep, sharp, stinging)
• Pain behind the vagina (female)
• Urethra discomfort
• Pain in the testicles and/or penis (male)
• Pain associated with ejaculation
• Pain in the hip with possible loss of range of motion
• Pain that radiates to the legs, thighs, groin


Treatment is
Treating PFD:
• Pelvic floor relaxation technique
• Warm sitz baths two or three times a day
• Avoiding constipation and straining during bowel movements
• Avoiding straining during urination
• Stress reduction
• Avoiding sitting for long periods of time
• Biofeedback
• Posture education (if needed)
• Muscle relaxants
• Trigger point therapy
• TENS(transcutaneous electrical nerve stimulation) unit
• Myofascial therapy
• Acupuncture
• Diet modification (to avoid spasms, constipation, and dehydration)
• Gentle exercise (muscle strengthening is only done on patient by patient basis and should be second to muscle relaxation!)
• Yoga
• Tai Chi

[icnmgrjill]

Ironically, I also didn't believe that all of my pain was coming from the bladder. I finally begged to have a laparoscopy to rule out endo and, after I woke up in the recovery room, was stunned just like you. I was clear of endo and the diagnosis of IC confirmed ... in my mind atleast.

Jill

[kennedy]

Hey Katrina,

That's a lot of help! Thanks a million!! :bow:

Kennedy