Beginning Treatment and Hoping to Feel Better Soon--Any Advice to Offer?

[megalicious]

Greetings Folks,

:hi:

My name is Meg, and I am 24 years old. I've finally getting treatment for my IC. I'm a bit curious as to the best way to deal with this often dehabilitating pain.

I've had a pretty tough time with things since I was 16. I have had two laparotomies and five laparoscopies to remove large (over 8cm) ovarian cysts and endometriosis. The gyno I used to see advised I have my right ovary and tube removed to prevent getting cysts--but that didn't work, as I now get cysts on the left one.

I was diagnosed with endometriosis a few months after my 19th birthday. I'm no stranger to being in constant pain. None of the doctors I've had have been willing to help; I've been made to feel like I'm crazy or some sort of criminal.

It's been so hard. I was engaged before, but my finance left me because he couldn't understand why I was hurting so often and so much--and why having sex was so difficult for me. I didn't have health insurance for a long time, and needing all these emergency surgeries to remove cysts has literaly bankrupted me.

But...

Things are looking up! I have good health insurance, and I have finally found a doctor who is helping me. His practice is actually devoted entirely to pelvic pain. Everyone there is so nice and helpful. He diagnosed me with having IC and pelvic floor dysfunction in addtion to my endo and cyst issues.

I'm taking a bunch of meds, and they're helping, but I still hurt so much sometimes. Is this normal?

My meds are: Elavil, Atarax, Baclofen, Lybrel (birth control that prevents me from having periods), and Advil and Lortab as needed. When I vist the dr, they give me some sort of "rescue instillation"--don't know what's in it, but it helps!

I'm beginning physical therapy in two weeks. I'm having something called a partial block to help the therapist really work the overly-tight muscles. Has anyone had this done before? What should I expect?

It's still hard. I've been on these meds for about two months now; how long does it take for me to feel better? I've changed my diet, but is there something I am missing?

I will greatly appreciate any advice y'all have to offer. Thanks for taking the time to read all this! I hope to be a good member to this forum, and I hope I'll be able to offer any support or advice if you need it.

Looking forward to getting to know you all,
Meg

[hdb1982]

Advil, or Ibuprofen is a big no no for most IC'ers maybe that is making things worse for you. Try eliminating that.

[omarito]

well:welcome: to ic network, i was touched by your words, i don't want you to feel alone, it is not a crime or a strange things to have pain most pain, i am like you,ihave struggled a long time to say [i am in real pain, i am not crazy] & i concluded eventually, that people who really appreciates my pain r the people who deserves to be really in my life... so i hope u feel better & i hope one day u will meet someone who will really appreciate your presonality, help you get through the painful days & be your beloved husband,who senses your inner & outer beauty

[megalicious]

I didn't know that Advil could make it worse! Thank you for the advice.

How long does it take to feel some relief with the pain meds you're on? I am taking the Baclofen (muscle relaxer) 3x a day and the Lortab (5/500) whenever I need it. I have been feeling AWFUL today... lots of pain.

My dr told me before that I could drink some baking soda in water to help a flare-up. I've tried this, and I have been chugging water like crazy.

I took my pain medicine about an hour ago, and I am still hurting. I want to cry! I'm just trying to stay focused and project a lot of positive energy to keep my mind off it, but man! It hurts! Is this normal? Is this severe pain part of an "IC Flare?" I've heard about flare-ups before, but I didn't really know what they are.

What should I do?

Thanks again for the kind words.

[Claredale]

It's hard to say what works since we are all so different when it comes to what meds work best. My pelvic pain doctor helped me alot and yours looks like he is taking good care of you. You are very lucky! I have truly been lucky and grateful that the 3 doctors that have treated my IC and all it's symptoms have always understood the importance of treating pain as best as they could. Dr. Ragi told me to never let my pain get to a certain spot, or it took longer for the pain meds to work. I also keep a heating pad with me in my car (plugged into an ac/dc adaptor, my work and at home to use when my bladder is irritated. My bladder doesn't do well in cold air, so even though it's almost May, I still sit at my desk with my sweater on and my heating pad on my bladder. When I used to have flares, I took alot of hot baths too which I see you do too.

It took me some time to get on the right combo of meds. Even when I would finally seem to have it right, my body was very likely to get "immune" to the effectiveness of one or more of them, so my doctor and I would try something else. I seem to be leveled off on the meds I am currently on. I did have to drop one since it made me feel paranoid for some reason. I had only been on it for a month, but long enough to know that it wasn't a "keeper".

I am also glad to see that you have a great support system. That is so important dealing with IC. I said early on that my husband definitely took our vows seriously because he has been my constant rock even when I was "mean as a snake" due to the pain and frustration.

Hugs, Tracey

[SharonA]

:hi: and :welcome: to the ICN... :)

I am so sorry that you are in so much pain.

I am curious about something. You say you drink a lot of water. What type of water are you drinking? That is an odd question, isn't it. But it really does matter. If you are drinking tap water, it could be causing some of your pain. Most tap water has chemicals added to it...like Chlorine. If you are drinking bottled water, make sure the label says that the only ingredient is water. There are some that have things added to it. I drink Natural Spring Waterbottled water. Oh...one more thing. Are you using ice? What is the ice made with...tap water? That could be a problem, also. Once it melts, you have tap water in your drinks.

It can take a while for your body to adjust to all the meds. I take Elavil 25mg and have for several years. It controls my pain very well. It started working for me very quickly, but there have been some here who say that it can take several weeks before they noticed a difference. It could take you longer??? What is the strength of the Elavil med you are taking? You might have to ask your doctor to up the dosage.

IC can be very painful, but once you find the right combination of things...meds/treatments...you can start to feel better. That can take some time, but don't give up. Keep trying to find what works for you.

Your doctor sounds wonderful. That is great. Be sure you talk straight with him. Let him know that you are having flares and ask what can be done to help you through them.

:) :) :)

[megalicious]

Thanks, guys.

I'm taking 10mg of Elavil every night. I forgot to mention that I take something called Atarax, too. It's 25mg; I think.

I have been drinking bottled water today--it's supposed to be natural spring water.

I guess what I am wondering is... is this severe pain I am feeling today normal? I mean, is it something everyone deals with from time to time... or do I need to let my doc know about it?

I've dealt with so many bad doctors before, and I'm so scared that calling the office about my pain will make them think I am just a whimp when it comes to pain. I've got a good relationship going now, and I don't want to mess it up.

[leelee88]

Hello and :welcome:To the ICN.. Does your pain come and Go? If so then you might be diet sensitive. I would check into the IC diet and try eliminating all the bad foods. I know thi sreally helps me.

[dg2901]

I had that unrelenting pain for many months when my symptoms first appeared. You have my empathy and sympathy. About the only thing I found that got rid of it was time...as sad as that sounds. I'd never felt pain bad enough to render me unable to walk, much less do anything else until the IC hit.
While your pain is not "normal" per se, it is 'normal' for IC.

Wishing you better days ahead...
Diana

[Mothergoose]

Hi I think alot of us have this kind of pain. My sugestion and this is just my opion.
I think if you take pain meds and an hour later you are still in alot of pain I would say you need more or stronger pain meds.
I agree with the previous person who said you should not let the pain get too bad before treating it, cause it is harder to get it under control.
If I was you I would chart my pain for at least a week. Chart: time
what you are doing
level of pain on a scale of 1 to 10
what pain meds you take, how much, and when
I would then chart again in an hour what your pain level is at
I would chart throught the night too (how many times you are up to pee, wheather pain woke you or your need to void)

All this will give your Dr. the info he needs to see if your pain is addaquitly being treated

I would then takke this with me to my next Dr. app.

I chart in a book, and I keep it by the toilet, and update it each time I use the toilet. Chart as you go, after the fact it is hard to keep time and level, straight.

As I said this is just my thought for you, I hope it helps you.

Mothergoose

[VickiB]

Unfortunately, I'm in the same position as Diana. The only thing to ease my pain when I flare is 'time'. My doctor doesn't believe in giving pain meds. I honestly don't think he has a clue as to how very painful this can be. Luckily, my IC symptoms come & go, -spending most of the time gone. But when it hits,....yowww! And there's not a whole lot I can do other than wait for it to pass.

I have found diet to be the major cause of my flares, though it sounds like you're already aware of the iC diet. And stress can bring on the flare,... -but it's not like stress is really a choice! -Sometimes stress just happens!

On the bright side, with diet and a bag of self-help tricks, I'm way better now than when this first started! Most days I even forget I have IC! The majority of IC sufferers do get better, so hang in there!

Vicki

[megalicious]

Thanks again for the advice everyone. I'm feeliing a little bit better this morning, but I am still having a hard time.

I started a pain diary yesterday after receiving some good advice here. I'm hoping it could help me see a pattern in my symptoms.

I have been trying to follow a strict diet to find out what causes me to flare up. I didn't eat anything unusual, but I did take a decongestant for my allergies. Do you think that could have something to do with it?

If so, what sort of medicines do I need to avoid?

[Mothergoose]

I am not sure which cold meds people can take, I take non. If I need a decongestant I use a spray one seems to cause less side effect, but only use for a few days or you can get rebound effect. I am sure many other out there in IC land will have suggestions of ones that are better than others.
Mothergoose