does anyone have this..please!

[linz]

In the middle of my 2nd really bad flare up this month. The last one was just over a week ago and lasted for 9 days, but even the week between I've still been very frequent and in a lot of discomfort. The discomfort I'm in just now is very different than it has been for a long time. It's not just the bladder feeling full and being in pain, it's more like a very strong burning feeling inside. I can feel it starting about 2 inches below my navel, does anybody else get this? I'm on a pill to regulate my periods and am due on anytime now so I guess it could be hormonal, I usually flare about a week after my period aswell.

I don't even know why I'm posting but I'm just so low and frustrated and can't stop crying. I'm so fed up with the way my life is turning out. I'm 20 next month and 7 years ago I never dreamt I'd be doing nothing with my life and have everything be so dominated with my IC. In the past 2 weeks I've been out the house twice, for no longer than 10 minutes. The first time was only for 5 minutes as I just had the worst urgency and after I went to use the public bathrooms I ran all the way home and had a panic attack halfway. I wish I could go and see a different urologist or something but there is only one within 20 miles of where I live and that's just too far for me, especially making bookings for in advance.

I'm not sure what I expect people to say. I'd just be more interested if people have this intense burning and if they think it could be hormone/period related. To be honest I can't even tell if it's in my bladder or ovaries all I know is that it just wont shift.

[Kathi]

I'm so sorry you are going thru this. It could be an infection & I would recommend having a culture done. I know getting things in the UK are slow, but perhaps your regular doc could do this.
Are you watching your diet? Period time is always hard & some have problems with hormone meds, as they contain progesterone & that usually flares IC. Hope this helps.
:flower:Kathi

[blue]

My bladder burns. I feel like it is on fire sometimes. This is the way I describe my pain to people. I say My bladder is on fire! I drink plenty of water to dilute my bladder, it helps some. The main thing that helps me is not drinking soda, or coffee!

Please try to stop the soda if your drinking it.

Have you had DMSO yet? I'm amazed, at the progress that I'm making with it. Unfortunately, it doesn't help all of us. It's going to by trial and error to find the right combination of what will work for you.

Sending hugs:grouphug:

[linz]

hi guys

thank you both so much for replying to my post. thank you kathi for mentioning hormone pills containing progesterone which can cause IC to flare up, as I have been on a pill to regulate my periods for 3 months which contains progesterone so I think I definately will stop it now because I'd suspected it had been causing flares but my doctor told me to perserve.

Can you tell me what a "culture" is? What is done and how long does it take, what is found out from it?

Yes the UK is very slow moving. So slow moving that the one urologist we have in Fife, Scotland, despite diagnosing me with IC seems to know nothing about the illness, and despite my many protests and printed proof that IC is aggrevated by foods/chemicals..he told me this is not true and he has never had another patient complain of this and that it is all in my head! very frustrating I'm sure you can understand!

Blue, thank you that is exactly it, when I was in flare up 2 weeks ago and a friend asked me what was wrong I just sobbed "my bladder feels like it is on fire!" I still get pain like many other IC'ers but urgency and severe discomfort is by far the hardest part for me to deal with.

Can I ask what a DMSO is? I've never heard of it before, you guys seem to get everything first in america, we don't even have Elmiron yet and my doctor and urologist will not have it prescribed/imported for me!

[blue]

The Uro uses a catheter and puts the medication DMSO directly into the bladder. It's been a big help for me.

Look for the thread Instillations.


I was also able to get some information off the internet.