pain worse after treatment??

[peachycajun]

I'm hoping someone out there can give me some advice....

I have been taking elmiron for the past 2 months with no relief. My doctor started me on instillations with elmiron and other meds to "try and jump start the effect of the meds". I have had two treatments so far and after each treatment my stomach becomes swollen and if I hadn't already had a hysterectomy, I would swear I was in labor! My doctor says he has never seen anyone react this way and wants to continue the treatments hoping it will pass. He doesn't want me to take pain meds because of the chance I will become addicted and tells me to keep a heating pad on my stomach and stay in bed till it passes!!!!! I can't take it anymore. I start crying with the thought of going through another treatment. The pain is SOOOO BAD! I really don't think my doctor understands.....I don't think anybody understands!!!!!!:(

Has anybody ever reacted this way before? My doctor makes me feel like I am crazy. But there is no denying it when you look at my stomach and it is 3x the normal size and the pain is unbearable!

If anyone has ever had the happen, please let me know so I know that I'm not crazy! Please tell me there is hope!

danielle

[Sarojini]

I've never had instillations of Elmiron, so I don't know about that... but when I get instills of DMSO, I have quite a bit of pain and frequency for a day or two after the instill.

Have you tried getting your GP to prescribe something for pain?

[yorkyloverx3]

YES
I have exactly the same pain you are describing. My instillations would sent me barely able to walk to the car and hurt for days. I finally had to stop.
Mine was the elmiron instillations but the pain was coming more from the catherization. It was horrible!!!!
I am now doing physical therapy and the pelvic pain is getting much better. I think I have finally found something that is going to help.
Good luck, keep trying
If you don't get the results from this ur find another who might understand.
My thougths are with you
Denise

[crystilclear]

I had the same thing hapen. Except I have a cocktail of heperin, solumedral, and rimso. My doc didn't want me to have pain meds either but if it's as bad as I felt then make him perscribe it to you. I went through it for 6 weeks. It was horrible cramping with shooting pain, made me have to go every couple of minutes, and felt like liquid fire! You shouldn't have to suffer. I hope you feel better soon. Good luck. - Chris

[ICNDonna]

I think it may be "second opinion" time. I do think seeing another doctor could be a very good option for you. And in the meantime, if your uro is not willing to order anything for pain so you can continue the treatments, you might even consider stopping the instillations for a while to give your body a chance to rest.

Just remember that it's YOUR body and treatments are YOUR decision. It's very important to have a physician who is willing to work with you on that basis.

Sometimes primary care physicians will order pain medications to help you over the rough spots.

Sending warm healing thoughts,
Donna

[creatingkarma]

You are not crazy!!!!! I am having the same problem. I didn't have elmiron instillations, but had the dmso + heparin. I had a total of 6 treatments & only felt worse. The uro said to give it a month after the last treatment to see if my bladder & urethra settled down, but they never did. I am in constant pain now (just like being in labor like you said) & went to a different uro yesterday that is on the ICN list & I really liked him & he specializes in IC:
http://www.ic-network.com/md/doctorlistings.html.

If you aren't happy with the way that you are being treated, then like Donna said, it's second opinion time.

Karma

[peachycajun]

Thank you all for your words of encouragment.:pray: This site is an answered prayer.

I'm not sure if I explained my reaction well enough. The pain and swelling don't start for about 12 hours after the treatment. It's like the treatment itself triggers a major flare!

I have an appointment with Dr. Moldwin, author of "IC Survival Guide" on June 7th. I can't wait. The doctor I'm seeing now is on the list and he is suppose to be an IC specialist, but as my fiance put it, " why not go to the guy who wrote the book?".

Thanks for letting me know I'm not going crazy.

danielle

[Julie Smith]

Congrats on getting appt. w/ Dr. Moldwin.

Please let us know how it goes. I met him briefly at an ic support group mtg. and he was wonderful.

Pls. keep us posted,
:thumbsup: Julie

[Dani72]

The same thing happen to me, after an instill. It was WORSE than labor!!!! I didn't get the next one I was supposed to have, but now I found out they are going to do one while I have my cysto on the 25th. Yay!! I can just imagine what that's gonna feel like. And my Uro won't take any further steps to help me until I have these instills. Isn't it my body??? Can't I make the decision??? Anyways you are not alone in this, I thought I was too, when mine hurt so bad.
Love,
Danielle

[Dragenj]

I asked my urologist on our first visit what he recommended I do for treatment next. I knew he would say installations...and he did.
He then said that he could not help me with the pain. At all!I then asked him point blank, as I have very severe pelvic pain, can't walk most days, except if I do the IC shuffle, I call it...anyway, I asked him if I did decide to go ahead with the treatments could he at least at a minimum provide me with pain treatment during and after the procedure and he said no. Fortunately, I am receiving chronic pain treatment...I am so grateful. As I was suicidal. I had a come to Jesus meeting with the Dr and nurse and now they are helping keep the pain at a manageable/coping level. Oh yeah, I am not going to do the DMDO treatments as he also could not guarantee thet it would help and NOT cause more pain. I have had so many invasive procedures done that I can't stand the thought. Thanks for listening.

[Julie Smith]

Dear Drag,

You have so many people here who care about all of us, pls. utilize it or call someone if you feel suicidal. I'm not an expert but I surely understand that good ol ic shuffle. That lasted a good 7 months, now it comes back after I've been out for 15 min. to a few hrs. Sometime it's there all day and I'm in for days at a time and can't make out to mail box or newspaper. Doubled over and praying my ride pulls the car around and I can get home on the couch in my comfy clothes. Of course I've gained so much weight, come to think of it I need some more cuz those are so tight. It's a luxury to go to the grocery store! It's been 14 months and I do have to say I am better than beginning.

My pryaers goes out to you, pls. take care of yourself. Julie

:headbang: :toilet: :cussing:

[patticake]

I had several instillations last year when I was first diagnosed, The last one I had did that to me. I was going straight to work after I had them and did ok most of the time, but that last one I was on fire and had to go:toilet: pee 15 times within 2 hrs.[luckily I worked at a hotel cleaning rooms so I had access to the br.] but only did a couple of drops each time. I went and to tell my surpervisor that I was going to have to go home, and he saww me walking down the steps and told me to go before I could get a word out. I was scheduled for my cysto-hyrdo for 3 days after that, so I just stayed out until after. That was the last day I worked. After I had my c-h, they found out that I had cysts on my ovaries,so then had to have them out. I am feeling a lot better now. I think that was most of my problem to begin with.I never want to have another instillation. :shake: