Can U please help? I am new!!

[SaraNicole]

Hello my name is Sara. I am a 27 year old married woman with 3 children. I have endometriosis and IC!! I was diagnosed with endo wehn I was 18 and was just recently diagnosed with IC. However they do believe that I have had this IC for a while it has just went undiagnosed until now. I am new with this and not really sure what this is all about, however I am trying to find out about it as much as I can. I am in so much pain and I feel like this is just really taking over my life. The urosurgeon that I am seeing now is a very wonderful man. I finally feel as though I have someone that truely cares about me for once instead of having to actually trying to find a doctor that even wants to take0 me on as their patient. I am terrified! I am now taking Elmiron, Prelief, Pyridium, Ditropan, and Percocet for my pain. The pain med does seem to be helping most of the time, but sometimes it just really seems to get much more intense and when it does this I am not sure what to do. My uro told me to find a support group and see what has helped them to get ideas and he said after talking with people if I want to try something we will. I feel almost as if my life has been takin from me in some aspects. I have no sex life anymore because the pain is just way to intense for me. I have alot of pain in my perineum area and also inmy back. Is this normal? Is there anything that you have found that has helped you in those areas? I use my heating pad alot and also hot baths do seem to help, but not always. I would be so happy to hear from anyone who might be able to give me some advice. I am sorry if I am rambling, but I am very scared. I just dopn't know what to do or where to go for help. If anyone would like to e mail me please feel free to do this. SwtSaraNicole@wmconnect.com If anyone has any advice or just has anything to add in general that may help me I would really appreciate it tremendously. I guess I just need someone to talk to about all of this. I don't mean to complain at all, but I just want some relief. I need somewhere to turn to for help and thats why I am here. I really appreciate your taking the time to read this it truely means a whole lot to me. Thank You again and I hope to hear from you soon.

Sara

[vm]

Aw, I am so glad you found us. You are definitely in the right place for support and information.

It sounds like you have a WONDERFUL doc ---- so cool that he suggested a support group and that he would be willing to try some of the things you learn about through your own research. That is really, really great!

Hopefully some of the people who are more familiar with the pain aspect of IC will come along and comment. How long have you been on Elmiron?

again and I hope to see you around.

[Dixiefireball]

amd to the ICN family.
the best place to start will be the IC diet and finding ouit what is safe for you to eat and what isn't please remember the diet is just a guide to go by we all are diff. so you may find things on that list that you can eat. but start your diet very bland to find your trigger points you can find about how to use it and other treatments out there for IC at www.ic-network.com/handbook.
you have came to the right place for support we all care and understand.

when i was dx back in 2002 i had no idea what IC was either and my uro also said i had it many years and went undx.
if you would like to chat please pm me and i will send you my email address.
i'm 29 and a mother to three children also.
don't give up hon there is many great treatments out there that can help you lead a normal life.
sending you hugs and prayers
Rhonda

[Sarojini]

Hi Sara,

to the ICN!! I'm so glad you found us. Do check out the Patient Handbook that Rhonda put in her post; it's great and filled with lots of info on diagnostic procedures, treatments, and also self-help hints you can use to make your life more comfortable.

In addition, you may be interested in reading a book called The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. You can buy this book and others in the ICN Shop (http://www.ic-network.com/shop). In fact, there is a great "Newly Diagnosed Kit" in the shop that contains some books including the Survival Guide and another great one called A Taste of the Good Life -- A Cookbook for an Interstitial Cystitis Diet[I] by Bev Laumann.

Which brings me to the issue of the IC Diet -- have you tried it yet? It's in the Patient Handbook, and involves eliminating acidic foods (citrus fruits etc), caffeine, and other problem foods. This simple step has helped many many IC patients reduce their pain. Take a look, and I encourage you to try it for a few weeks to see what happens to your pain level.



Good luck, and hope to hear more from you soon!

[ICNDonna]

to the IC Network.

You've been given some good advice, especially regarding diet. Diet can be extremely important in keeping IC symptoms under control. It can seem daunting at first, but it's really worth the effort.

My IC was diagnosed almost thirty years ago. If there's any one thing I like to share it 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 are a problem, but most of us do. I know I feel good most of the time. I may need to urinate more frequently than most other people, but that's not too bad and I'm really used to doing that.

Elmiron can take up to six months or longer to be effective so I encourage you to stick with it.

Warm hugs,
Donna

[tigger_gal]

~Sara~
you sure have come to the right place for support.... The gals here are great. We all share our stories, pain and joy's here.... even tho we are not doctors we share our own experiences, and hope that maybe it might help someone else... When we have questions we post and someone may know the answer...
Being an IC pain patient myself, I too, get in the hot tub and the heating pad... Thats, all the comfort I can find besides a pain pill....
Remember we are here for you....
hugs
Brat

[Heavenly_Sent2u]

Thank you for joining us. I am new here to and I know what you are going through and am sure the rest of the women here are too. The only meds I am on is Elmoron and something Hydro. I can't remember what the rest is. I am in pain all the time. My Dr wont give me anything else because I am on some other meds for something else that is wrong with me that creats alot of pain as well. I am sorry you are having a hard time, but I assure you, this place really helps you and you know you always have someone to talk to. I hope that you start feeling better soon. Missa

[SharonA]

Sara...I am so glad you found us. There are so many people here who are very helpful and supportive. Do check out the IC Handbook. There is so much valuable information there. Do look into the IC Diet. There are many ICers who have found a lot of relief by watching what they eat and/or drink. There are many treatments available that can help. It may take some time to discover just which ones will work for you. This disease is very individualistic. Not everyone has the same symptoms nor finds relief from the same treatments. It is most fortunate that you have a doctor who is willing to work with you.

For me, I have found relief from taking Elavil (Amitriptyline). It is an antidepressant that is used at small doses to help with pain. What is does, from what I understand, is interfere with the pain receptors in the brain. I take 25mg in the evening. It has allowed me to live a pretty normal life despite IC. Remember, we are different and present different symptoms and are helped with different treatments.

[Katrina]

Sara!! So nice to see you on the boards!
The pain you described is normal and I was in the same condition when diagnosed and am better now. One of my favorites for pain that won't go away is alternating between cold and heat. I guess one other general advise I would have is to spend some time each day journaling about the things that do like about your life. IC is one part of it and for me it turned out that IC had a lot of good things...like this board and a lot of new friends.....non the less it is only one part.

Feel free to contact me anytime!

[KristaM]

Hi Sarah,
Welcome to the boards. I'm a newbie as well and I can tell you that these women are so knowledgable and thoughtful. I understand what you are going through. I was just diagnosed 2 weeks ago and the pain is almost unbearable at times. We are the same age except I don't have any children. It must be really hard taking care of 3 kids and being sick. We are all here for you!

[SaraNicole]

Hello !! Thank You all so much for answering me. I have checked into the IC diet and I will definately start trying it out!! i have just started my Elmiron last week so I have a ways to go, but I will definately stick with it!! It is so nice to have people that you can talk to that understands what you are going through. You all seem so nice and I really do appreciate the time you have taken to return your input. It truely means alot. I will definately be checking into the books and also into the things that you all have offered as some helpful advice. Is thee anything that you all have done about the pain during sexual intercourse that has helped you and also what pain meds have helped you the most? Hope to hear from you soon!!!!!!!!!
Sara

[Sarojini]

Pain during sex -- ah yes, that is something that many ICers struggle with. I find that it helps to:

-- Communicate with your partner about what hurts.
-- Relax as much as possible before intercourse: give each other massages, take warm baths, etc. This will help relax your pelvic muscles and "open" you up a little more so that your bladder isn't so much "in the way."
-- Experiment with different positions, as some may hurt more than others.
-- Use LOTS of extra lubrication. KY Jelly is good, and there are many others too -- my husband and I use one called Liquid Silk. You need to experiment and find which you like the best.
-- If you experience urethral burning during/after sex, try taking a Pyridium about 30 minutes to an hour before the act. This numbs up the urinary tract and can make the burning less severe.
-- Take a muscle relaxant before sex (Flexeril, Zanaflex, even Valium, etc) as that will relax your pelvis too -- make sure your doctor okays this!!!
-- Afterwards, try to rest and lie still for a while. Use a heating pad or an ice pack on your lower abdomen and/or crotch (whichever you prefer) to help relieve pain and spasms.
-- Take pain medication if necessary.
-- Don't be afraid to say NO if you're flaring. Also remember there are other things the two of you can do that do not involve penetration. Pretend you're in high school again and don't want to go all the way... it's fun and sexy to kiss and touch each other like that again

Hope these help

[kadi]

Everybody has said such good things! Just wanted to add another hello & wishing you better days soon!

[Queensweater]

Hi and Welcome! I'm new here too, and also suffer from endo and IC. I'm 26, but don't have any children. I really don't know what I would do if I had to look after 3 young ones right now.
My uro basically told me I'm not allowed to have intercourse (I'm a newlywed...so that sucks!) because it would cause flare ups.
I am doing physio though, which is at least getting my pelvic muscles loosened up and more relaxed. Maybe this is something for you to consider.

Hope you're having a good day!

Heather

[Myli]

Glad you found this boards, there is so much here to help you. I've only been here about a week or so and the support is tremendous. There is a board devoted to romance and sex, it has a lot of information that could be very helpful. There are more ways than one to have a good sex life despite IC.

One thing that I have learned in dealing with this IC, is that you have to stand up for yourself and don't hesitate to tell your doctor exactly what you are feeling and how it is impacting your life. There are a bunch of alternatives for treatment. Different doctors seem to follow differing treatment plans. For instance, mine has never talked about Elmiron or pain meds really.

For myself, I have found that ice works much better than heat. I'm only sorry I didn't try it much sooner when heat stopped being a help. Even though I had read of using cold instead or alternating with heat, I don't like feeling cold. Well, a big mistake that was. Now when pain strikes, the first thing I do is head for my cold water bottle thingamie. Within half an hour, the pain will begin to dimish greatly. Just one possibility if you haven't tried it.

Wish there was a quick remedy, but there don't seem to be any. And we all experience this differently and need differing medication regimes. But, it will get better as you find what works for you. Please explore this website as much as you can. In only a week of reading the boards, I have learned so much. I have found it and the support of these boards invaluable.

I hope you are feeling much better very soon!

/hugs
Myli