My 'head' is so mixed up!

[alana rose]

I'm not too sure where I should post this, but here it goes!

I'm really trying to be positive and am in hopes that my new meds will help me. I pray that the pain will diminish as we all do.

I was talking with my Mom the other day. I was saying that I don't know what it is like not to be in pain. I can't imagine my life without it. I just think that I will feel like this...always. I don't know what I would do without the pain, perhaps it is like a 'crutch' of some sort. Don't get me wrong, I do want my life back. Am I scared? Am I crazy? I just feel so confused with the thought of having my life back. My uro told me that it is like having your right arm cut off, you are lost without it. Why do I feel like this? I should be happy to think that my pain level may diminish. I am embarassed to post this...I think that chronic pain really does a number on our brains. I just have a sort of strange 'anxiety' thinking about it and trying to figure out why I feel this way. Does this make any sense to anyone.

I feel really silly-I've been wanting to post this for some time now, but didn't know how to word it so I wouldn't seem ridiculous.

Thanks once again for your support!

[DanaW]

Hi Alana,

Don't worry that you are feeling things that you shouldn't feel ! I think we all go thru some of these thoughts.....It is HARD to imagine life without pain. I do think that you will adjust as your symptoms get better. May I ask what your meds you are on and why you think that you will get better? I pray that you do, but, was just wondering.......I am finally back to living a better quality of life since my meds were increased. I still have pain but, it is bearable right now. For me I am thankful that I finally have some relief. Just know that you are not crazy! We all experience different feelings/thoughts having IC. Let us know how you are doing.

Dana

[ICNDonna]

What you are feeling may be caused by being afraid that this new treatment option won't work --- it may be that you are just afraid to hope. I'm glad you have discussed this with your doctor.

One of the things I have learned in my thirty years with IC is to enjoy every "feel good" day and deal with tomorrow --- tomorrow.

Sending gentle hugs,
Donna

[SharonA]

After experiencing the kind of pain we deal with, day to day, it is normal to feel anxiety about things changing. We get used to the "new normal". We don't trust that feeling better will last. We are afraid that we will be worse off and left with pain and disappointment.

Don't worry about posting your feelings and fears here. This is a safe place where you will receive understanding and support. :kissing:

[alana rose]

Dana-
I have recently been diagnosed with endo on top of IC-they figure that this is contributing to my extreme pain. My gyno has put me on Lupron. I have heard a lot of good things about it and pray that it works. I don't know what to do otherwise. I have tried all IC treatments/meds out there and nothing has worked. I know that there is an endo clinic in Vancouver that my gyno is sending me to is the Lupron doesn't work. It would be SO GREAT if Lupron would work.

[DanaW]

Alana,

I too have tried everything. I also suspect that I might have Endo. I never had painful, heavy periods until after my last c-section/tubal. Have you always had heavy, painful periods?? Mine are terrible! Is Lupron a form of birthcontrol that stops your periods? I had a Depo-Provera shot about 5 months ago to stop my periods but, had some bad side effects. One of them was more hair loss. Which I didn't need bc I had been losing hair ever since having dx'd with Low Thyroid. I didn't get the second shot at 3 months bc of that. I wonder if having 2 c-sections can cause Endo? Was your Endo. dx'd by Laproscopy? I had a ultra-sound done last year but, they only found a small fibroid. I will pray that this treatment works for you. Take Care

Dana

[K9wife]

I read on another IC website that we, as Americans, have some misguided idea that if we admit we are in pain or have a disabilty of any kind, that makes us "less-than-perfect" and that, in our society today, is just not acceptable. Right? WRONG! As IC sufferers, we have to fight embarrassment in talking with our friends and families about what we are feeling, and even our own Drs sometimes. If we were diabetic, would we be ashamed to tell our doctors of how we feel? If we had high BP would we hesitate to tell our families of our headache? So, we all need to just change the way this disease is treated in the public's eye, and tell ourselves that it's OK to voice our complaints sometimes!!!
Chronic pain, as we all have, has a huge effect on lots of different things: our jobs, our relationships, our finances, but most importantly on our own minds. All of us have felt like you do, and thank goodness we now have a site where we can "vent" and know that someone truly understands! I know that I have been dealing with the chronic part of IC better since I've been reading all the other posts and know that I'm not alone in this strange and scary IC world! Keep writing...it soothes the soul....AND the bladder!!!!! Hang in there!

[alana rose]

Dana-
My periods were horrendous as a teenager. My cramps would last for days. Then I went on bc pill at 16 and they seemed to be a lot better. Then about a year ago they came back with a vengance. Very heavy with lots of clotting and last nearly a week. I was getting my period every other week-which is great when you have IC. I ended going to a gyno because I wanted to have my bladder removed. They wanted to make sure it wasn't something else causing the pain. Before the lap my gyno was pretty sure that I didn't have endo. They did a lap and a cystoscopy and found that I have extensive moderate endo. A lot of it was on my bladder. Lupron is what they call an antagonist (GNRh) is stops the production of estrogen. Puts you into menopause-basically no period no more endo. As my gyno says 'it dries you up.' Now is that a medical term?? lol! Lupron can aggravate your symptoms for 7-21 days-which I am experiencing right now. Thank goodness I am on a medical leave. I really hoping that this will help.

[diane57]

You can have endo and not have any "period" symptoms of it - I've always had very regular, light-ish, unpainful periods, and so was quite surprised when my gyno did a laparascopy (for ovarian cysts) and discovered some endo. He said it was mild, but was old and thus theoretically was "bothering" me every month...