No bladder pain for a few days...

[ICLori]

It's probably too early for me to trust this or say I'm in a remission, but I am so grateful that for the past several days, I've been without the bladder pain that had been a part of my life 24/7 for over six months. In fact, I felt so good, the urgency/frequency was so much less, that I even went on a quick trip with my husband to see Gettysburg and really enjoyed myself instead of just enduring it like I did with everything before when I was always hurting!

I am keeping my fingers crossed this semi-remission is due to Lupron. It seems that it might be, because my symptoms increased during the first two weeks, just like the doctor said it might - if endometriosis was the cause. So I should have known just by that to get my hopes up, LOL! And sure enough just like my doc said, by the third week every day I was feeling better and better. Today I feel like I don't even have IC at all.

I have to wonder if maybe all my IC symptoms including how my bladder looked with the cystoscopy, were due to endometriosis? It seems possible. Endo on the outside of the bladder can mimic severe IC symptoms. It sure would explain why I kept getting worse and worse every year instead of staying the same like most IC'ers do. And it might even explain why some meds didn't help me, and some meds irritated my bladder when really there was no good reason for them to. Maybe some of my atypical symptoms and reactions, were due to endometriosis? Makes me wonder.

Well, I sure am hoping this remission continues with the Lupron. I am so grateful for it, I know you all know exactly how I feel. Each day without pain, without being tied to the toilet, is an absolute gift from God.

I'm hoping that maybe this will be my miracle...it's hopeful so far...and I'm hoping for anyone in pain, their miracle happens for them quickly too.

Blessings, Lori

[tigger_gal]

:woohoo: I am so very happy for you.. :dance: I sure hope it is a remmission and last forever.... thanks for giving us some great news....
hugs
Brat

[shennan]

:woohoo:
:woohoo:
:woohoo:
:woohoo:

great....

i'll keep my fingers crossed for you.

:dizzy: shenna
:)

[vm]

Lori - When I told a friend of mine about my IC symptoms when I was first diagnosed she said it sounded exactly like when she had endo on her bladder. She felt better once they removed it. She is feeling poorly again so she doesn't know if it means IC or if there has been more growth.

Anyway, I am sooooo happy for you. :kissing:

[Annie2]

Lori,

I am absolutely thrilled for you!!!!!!!!! :party:
I pray this will be an endless remission for you.

Annie :butterfly

[jaime15]

Lori,
I hope you continue to feel better too!! :)

[KeeKee]

Lori,

I'm so happy for you! It's a humbling feeling when you don't hurt after hurting for so long. Enjoy it to the fullest!

What made your doctor think it was endometriosis in the first place? Did you have any tests done, or was your doctor just speculating and decided to try the Lupron?

Thanks and again, I am thrilled for your success!

[Myli]

Sounds wonderful, hope it continues!!! :woohoo: :dance:

:grouphug:

Myli

[kadi]

Hi Lori,
When I first researched my symptoms on the internet, I found an article that called endometriosis & IC the "evil twins of pelvic pain". In fact I was initially misdiagnosed with endometriosis to the point that it took a laparoscopy to prove I didn't have it, so I could get a urologist to treat me! (I don't have endo, but I have discovered that changing birth control pills was enormously helpful in reducing the IC- daily bladder/urethral burning. I am convinced that for at least some of us, IC is hormonal.)

I am so glad you're feeling better & will pray that you have more & more good days!

[ICLori]

Hi, guys, thank you all so much! Thank you for sharing in my happiness (oh I am so glad to finally be able to post something positive!) I am so happy that I am doing well on Lupron.

I was diagnosed with endometriosis initially about seven years ago, when I had been having severe pain on a cyclic basis near my belly button. They went in and scooped out big pieces of scar tissue from around there with tons of these little black dots imbedded in it. The lab report confirmed there were tons of little endometrial implants.

Then it came back, and a few years ago I had my entire belly button plus about five ounces of "stuff" scooped out of me again. Once again, the lab report confirmed I was riddled with endometriosis. In between the two surgeries, I was diagnosed with IC but no one thought about any possible connection between the two diseases or that I might have endo on my bladder.

The reason the urogyn put me on Lupron was because of my established history of endometriosis, and the fact that in cases of extensive endometriosis, it tends to affect one in seven or eight bladders. Sometimes with symptoms, sometimes not. Apparently I am one of the seven or eight, and one with symptoms rather than without. It was less invasive than doing another surgery to go in and look at the bladder, and even if they had done surgery instead, the urogyn said many endometrial implants on the bladder tended to be so small you couldn't see them to remove them, but they also were scattered so frequently among the "real" bladder tissue that it would be almost impossible to get all of it. So he felt the best course of action was taking Lupron to see. If I got initially worse, then better (as has happened) then it was a pretty sure thing it was endometriosis-related. If not, then it was back to the drawing board (and bladder removal, etc.)

If it continues to work this well for me, I guess I'll have to see what's next - stay on Lupron, have a hysto with ovarian removal, etc.? Don't know. But I sure am grateful for every minute free of pain.

The most amazing thing too in my mind is my lower back pain is gone. I have had that almost constantly for the last 4 or 5 years. I thought it was maybe due to IC, maybe due to being older, fatter, out of shape...but boy oh boy the Lupron got rid of my constant lower back/flank pain like magic. As well as getting rid of the bladder pain. I never mentioned my nearly constant lower back pain/flank pain to any doctors because I just knew what they would say "oh you are fat, lose weight and exercise and the pain will go away" you know how judgemental docs can be especially if you are at all overweight. But even when I tried to exercise, did back stretches/exercises all of that, my back pain didn't go away. One shot of Lupron and bam, back/flank/bladder pain is gone.

And I can't believe how excited I am about life again, and how much more energy I have, now that I'm not hurting anymore. I literally have not felt this good for many years. What a gift!

Gosh, you know, if any of you have established histories of endometriosis, and if the standard therapies for IC don't seem to work for you, maybe it's worth it to ask your doctor if your symptoms could be endometriosis-related. I don't know how common this is, but if it happened to me, there are probably a few others out there too.

Boy, I'm laughing now because I'm thinking - well now I guess I know why DMSO didn't work for me, LOL! I guess because it works way better on IC than it does on endometriosis, LOL!

Blessings, Lori

[liznazz]

I am happy to hear you are feeling better!! I know just by reading your posts that you have had a really tough time. I hope you feel good like this for a long time! :woohoo: liz

[Mel53H]

Yippeee! I love it, I love it, I love it. :woohoo:

:dance: :dance:

:party:

Mel53H

[ICNDonna]

That is such good news!

:)
Donna

[vm]

So, so, so, so, so happy for you, Lori!!!!!!! :woohoo: