New and currently in pain

[greta79]

I'm newly diagnosed with IC, at first the dr. said endometriosis but it turned out to be IC. I have a lot of the symptoms, freq urination, hypersomnia and severe pelvic pain (which is happening now). A question I forgot to ask is, How come that when I get my period the pain is 10x worse?

[MissCasey1055]

I'm in the same boat! I've always had really really bad cramps, but I hurt so bad that time of the month now from my IC too. But I really don't know why that is. I've been in pain all day long. First day in forever. =/ Hopefully you'll start feeling better. Once you stick with the diet and get used to your meds, the pain will hopefully stop. It did with me. Now I just get it every once in a while

[greta79]

you're so young. Must really be trying to have these problems so early in life. I'm 26 and other than the IC I've been lucky. You are in my prayers

[MissCasey1055]

you're so young. Must really be trying to have these problems so early in life. I'm 26 and other than the IC I've been lucky. You are in my prayers
aw, thanks. =) I'm actually glad they found it so early because they can treat it and I'll be fine later except with a here and there flare, if i'm lucky. lol

[greta79]

I'm glad. I am in a middle of a flare up and I get a bit emotional. I'm not due for my period for another 2 weeks, this is the first time since I went to the hospital in March that its this strong.

[MissCasey1055]

I'm glad. I am in a middle of a flare up and I get a bit emotional. I'm not due for my period for another 2 weeks, this is the first time since I went to the hospital in March that its this strong.
Mine actually started getting better, or I thought. But this whole week I've just felt horrible. I'm tired all the time and I have bad pains, but they come and go

[greta79]

I've got the pains but now I'm total insomnia, tomorrow I'll crash and sleep forever

[MissCasey1055]

I've got the pains but now I'm total insomnia, tomorrow I'll crash and sleep forever
yeah, I just posted in the symptoms forum about insomnia lol. I have the hypersomnia where I'm just tired all the time, but at night I cant go to sleep. But once I fall asleep, I'll sleep my normal 8-9 hours and then an hour after I wake up, I need another nap.

[greta79]

I get that too. I'll go to sleep at like 2am, wake up at 10am. Then at 2 or 2:30pm, I go back to bed and sleep til 5 or 6 pm.

[MissCasey1055]

I get that too. I'll go to sleep at like 2am, wake up at 10am. Then at 2 or 2:30pm, I go back to bed and sleep til 5 or 6 pm.
i went to bed about 9:00 last night, woke up at 7 today. I was sick today from my IC so I stayed home from school and I went back to bed until 12:30. Fell asleep again at 4:00 and woke up at 8:30. Now I'm here and I won't be able to fall asleep again til 1 or 2. grr. lol

[greta79]

At least you're not alone

[MissCasey1055]

At least you're not alone
amen to that! lol. Too bad I'm alone here. I only get to talk to people about it online.

[greta79]

I usually talk to my mom, but she's got her own deal, (back probs) I don't like to drag her down. Plus sometimes I don't think she understands why I'm always tired or always sick or in pain.

[MissCasey1055]

I usually talk to my mom, but she's got her own deal, (back probs) I don't like to drag her down. Plus sometimes I don't think she understands why I'm always tired or always sick or in pain.
yeah i try talking to my mom too, but she doesn't understand just how much pain i'm really in and what it's like to be in the bathroom every 5 minutes and she usually tells me to suck it up and get over it

[greta79]

yep, me too. Well I'm gonna try to get some sleep. I figure if I lay down now I should be asleep by 2. thanx for the chat, it really helps. :angel:

[MissCasey1055]

yep, me too. Well I'm gonna try to get some sleep. I figure if I lay down now I should be asleep by 2. thanx for the chat, it really helps. :angel:
lol good luck. thanks for talking with me. =)

[greta79]

thnx for listening

[traceann]

Hi Greta and :welcome: to the boards!! I am sorry to hear you are in pain and flaring, so not fun! :cussing:

Here are a couple links for you. One is for the Patient Handbook (if you haven't already found it, ;) ) and the other is a link right to the IC Diet foods list. Casey is so right, the diet can be a HUGE help. I know it was to me. It took a few weeks to get feeling fairly decent, but it did start to decrease my discomfort within the first week or so.
Patient Handbook:
http://www.ic-network.com/handbook/

IC Diet Foods List:
http://www.ic-network.com/handbook/diet.html

And yep, IC flare-ups can definitely be hormonal!! Some months my bladder gets cranky at ovulation, then fine, then cranky with onset of PMS. Sometimes, it's cranky from ovulation right through to the start of my period. Ugh. :headbang:

When I was first diagnosed and in the "big first flare" (the one that got me diagnosis, the beginning leading up to and right at diagnosis is usually the worst!) I too had the insomnia troubles. My poor hubby, I drove him crazy. I'd be up til like 5 am, sleep a little and up and at 'em again. There were some weekends that would find us cleaning out the entire garage at 4 am...it was crazy. Thankfully that has gone by the way-side, lol.

What meds do they have you on?? Some self-helps are:

Heating pad: my best friend!! I have one now with auto-shut off, love it!
Thermacare Heat Patches : These are great! Especially for sleeping (or lack of, lol) and travelling!!!
Baking soda in glass of water: If you have eaten something that is aggrivating your bladder, you can try drinking a glass of water with a tsp of baking soda stirred in. Tastes yucky, but it works to help calm the bladder. Be careful if you have sodium-related health problems though.
Tums: Tums work just like the baking soda. I have found that for me, the baking soda works better. But I carry Tums with me, for when baking soda is not available...
Cold Pack:I keep a cold pack in the freezer for when the bladder/vulvar area decides it wants cold. In the beginning when I had horrible vulvar pain, that was the only thing that would make a difference to me.
Frozen water bottles: Along with my cold pack, I also refill water bottles and freeze them. They are great to hold between your legs, in the crotch area, for travel, etc. Same principal as the cold pack. Works great though. Especially when urethra decides to act up!
Pyridium/AZO Standard/Uristat - the Pyridium is the Rx, the AZO Standard and Uristat are the OTC version. They all numb up the bladder/urethra and relieve pain/urgency/frequency. The downside is they are for temporary relief, like to be used only few days, and they make you pee orange. It can stain undies too, so pantyliners can be useful to protect clothing.

That's all I can think of off the top of my head, hope this helps a little bit and I hope you start feeling better soon!!!

Hugs!

[~*~Christine~*~]

:welcome:
I asked my mom the same question and she told me it hurts more during that time because the uterus is contracting/spasms/bloats and since it's so close to the bladder it contracts against the bladder causeing more pain. It's especially worse if you suffer bad cramps during your period

[greta79]

thanx for the info. My dr. hasnt put me on any meds yet, I guess this is new to him.

[ICNDonna]

The Patient Handbook has a lot of good information on treatments. Just remember that it may take some time to find exactly which treatment options work best for you and which foods and drinks you need to avoid. However, most of us do get there and most of us feel good most of the time.

I have had diagnosed IC for thirty years now and I have functioned normally for most of that time, with some flares.

Sending healing thoughts,
Donna