Another newbie with questions

[An2Cute]

Hello,
My name is Andrea and I was recently diagnosed with IC. My gyno thought that I might have endometriosis but when they looked, it ended up that I had IC instead. I have been trying to stay on this IC diet, but I don't know how much it is really helping. Recently it hurts so bad to have sex, not only the actual doing but afterward it burns so bad and seems a little swollen down there. Does this seem normal for someone who has IC? I didn't get a lot of info from the doc about this and the websites for IC are a little vague, plus everyone is different.

Thanks,
Andrea

[Dixiefireball]

Hi and welcome to the ICN boards. Sorry you was dx. with IC and are having problems and sadly yes some times having sex when you have IC can be a chanellage, but there is ways of making it more pleaseing and less painful for you. one thing that helps me is using k y jelly the warming touch brand, but we all or diff. you may even try getting on top instead of your partner being on top that way you have more control etc. don't worry you will get some more great advice and if i'm not mistakeing you can find something on the topic in the handbook at www.ic-network.com/handbook if not i know Jill sales some great things in the ICN shop to help with this subject.
sending you hugs and prayers
Rhonda

[Katrina]

:welcome: to the ICN!! You came to the right place! :grouphug: It can take some real time for the diet to help....especially if you have unusual triggers....that is why the illimination diet is often helpful because it can help you find your triggers...even though it is way no fun.
Recently it hurts so bad to have sex, not only the actual doing but afterward it burns so bad and seems a little swollen down there.
Hurting during sex is very common with IC. The burning is probably an Pelvic Floor Dysfunction (PFD) reaction. PFD is something about 80 percent of IC patients have. For me mine flares after sex and burning is my big symptom.

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. I gave you some links with ideas of avoiding pain during and after sex. When PFD is a big part of it heat, cold, and moisture can really help. I often ware an adhesive heat pad during sex to help relax those pelvic musscles. Lavender lotion can help relax the musscles too and is good to enhance the mood. :grouphug: Your not a lone and I promise you things do get better. When I first got diagnosed I thought sex was impossible and was scared it never would be again. I learned a lot and am doing so much better now that it is back in my life. A pre and post sex ruitine can help and although that may be more work it it does help!!
http://www.ic-network.com/forum/showthread.php?p=183302&posted=1#post183302 Jen's thread of great tips to avoid pain during/after sex http://www.roadtoslainte.blogspot.com/ more sex help

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?p=199542#post199542

[Shehorst]

:welcome: Andrea,

Katrina is right - it takes time for the diet to work. You have to remember that you are trying to repair an open wound that you can't see. Sex is a scarey thought for me but at 53 and 25 years of marriage it's not as big of an issue for me. Check the site for posts under sex if you need some insight. I am also newly diagnosed but I am starting to feel better. With God's help you will slowly recover - it will take time and effort on your part. Also, find a good doctor even if you have to go through a few to find the one you are comfortable with.

Sherry
:cat:

[An2Cute]

Hey guys,
Thanks for all the great advice. I feel so confused about this because all the posts that I read talk about having flare ups... but I don't have that. The only way I was really diagnosed is because I also have IBS and knew the medicine I was taking wasn't working. I went to a few doctors and happened to mention that whenever I sneeze or blow my nose I have to hold down there or I'll pee my pants. Please keep in mind that I am only 20 years old and haven't had children. That is when they found out that I have IC. My birthday is coming up and I know I will not be able to drink at all (I also think I am allergic to alcohol because my face feels red and swollen after a sip) but anyways it will be a very fun day. I guess in a nut shell I feel that I don't know what symptoms I have are being caused by the IC. I am on Elmiron and read that a lot of people loose weight (wich has big a problem for me, but I thought it was from my hypothyroidism). I also think that it is hard for me to explain all of these symptoms that I am having because my fiancee's mother has this and she never talks about it at all. Anyways, thanks again!

[amber sevy]

:welcome: I know that being told that you have IC is very hard :cussing: but with time and a lot of reasurch you will find what works for you. we are all so diffrent yet we all suffer. the others have given you some great things to read. try them and know that we are kind of like a family here ask us anything and someone has been there and will know how to help. :grouphug: most of all do beat yourself up :headbang: take it as easy as you can and take life one day at a time.

[Shehorst]

Andrea,

Just curious, have you had a hydrodistention? Correct me if I'm wrong ladies, but isn't the hydro the gold standard for diagnosing IC? Did anyone mention Pelvic Floor Dysfunction - your pelvic muscles could be weak causing the pee jerk reaction :dizzy:.

Sherry
:cat:

[Katrina]

I couldn't drink on my 21 birthday either. I had my fellow dorm students all confused....they didn't understand I was 21 and than over 21 but never drank.
Sherry, ya I mentioned Pelvic Floor Dysfunction....I am sure you meant a doctor lol
None the less it is good to bring up again because loosing contol when sneezing is another sign that PFD is part of the problem. Boy this thread is popular...I subscribed to it and before I got done I see there is already another new post.
Hypothyroidism may be contributing more to your IC symptoms too. I am going to post and find out if the new post is from you.

[An2Cute]

Hi Sherry,
Yes I did have a hydrodistention. All of this happened within a week of seeing the doctor and of course when the doctor comes to tell you that you have this your all groggy so he didn't tell me much. I am confused as to what the difference is between IC and Pelvic Floor Dysfunction. Thanks!

[Katrina]

Pelvic Floor Dysfunction is a weekening and or tightening of the pelvic floor musscles. IC is a disease of a inflammed or irritated bladder.
In many IC cases PFD can be in part caused from the IC just as the PFD can make the IC worse.

I wouldn't say that the hydro is the gold standard for a diagnosis....since a negative result doesn't illiminate IC. Still since it can also be a treatment and can find other things than IC it is an good thing to have done....until you get a negative result and still have symptoms.

[Shehorst]

Andrea,

I am going to ask Katrina to help me out on these questions because I am also new. Interstitial cystitis (IC) is a chronic inflammatory condition of the bladder- its cause is unknown. Unlike common cystitis, IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy. Basically, the lining of your bladder has been damaged - that is why it sometimes feels like you are peeing acid.
IBS seems to occur as the result of abnormal contractions of the intestines, but pelvic floor dysfunction and increased rectal sensitivity may also play a very important role in the development and maintenance of IBS symptoms. The association of pelvic floor dysfunction and IBS is probably best exemplified by the frequent comments from patients that their IBS symptoms have significantly improved when their PFD was treated. I took this from http://www.ichelp.com/RelatedDiseases/PFDAndBowelProblems.html. After reading this myself, I can see there is a diffent link between the IBS you have and Pelvic Floor Dysfunction. You may want to ask your doctor about Pelvic Floor Therapy.
Katrina, I did mean the doctors - sorry sometimes my old age eye problem misses things.

Sherry
:cat: