Is this pain normal?? Bladder or pelvic floor? - Interstitial Cystitis (ICN) Support Forum

ICtampa · 11-24-2009, 05:40 PM

Hi everyone!

I am newly diagnosed with IC and am experiencing pretty severe, aching low abdominal pain that radiates around my sides to my lower back.

I have been using a heating pad and alternating it front to back. I am wondering if this is normal for other ICers? And do you think this is more of a pelvic floor problem? I am having some frequency, and burning while I pee, but honestly this cramping, aching pain is the worst

(I am on elmiron, hydroxyzine and prosed) i just started the elmiron on sunday.

Thanks for your help in advance! I am so thankful for you all already!

best, xo, kate

Elacey · 11-24-2009, 06:39 PM

I definitely know how you feel.I have horrible abdominal and lower back pain.Aching is definitely the word to describe it.I'll think that I have back problems when really it's the IC.I'm pretty sure it's different for everyone but,I definitely feel that way.Now the burning when you urinate,that is a good question because sometimes I feel as though I have a burning sensation but,I chalk it up to me being crazy.I wonder if burning is a normal symptom.

Skynard · 11-24-2009, 10:43 PM

For me pain is my main symptom. My sister has the frequency/urgency. The pain is daily on my right side - ovary area. During a flare however, my entire abdominal area hurts, down into my pelvic area, in my vagina, down the insides of my legs and around the back. The burning also accompanies this, so I take a Pyridium and it usually knocks it out, I also place a small amount of Crisco (doctor's orders!) in the area. Please make sure you do not have a bladder or kidney infection. The sensations feel EXACTLY the same and you don't want it to progress. Of course, drink tons of water - is your water filtered? When my pain progresses as described above, that is when I put my emergency plan in place. My husband and I were just trained yesterday for at home instills as well.

Hope this helps.

Wishing you well on your journey.

God Bless,

Skyn

Skynard · 11-24-2009, 10:46 PM

Kate - have you thought about taking DH Aloe Vera (natural anti-inflammatory) or Cystoprotek (natural Elmiron)? You can find info on both of these on this site. Please remember that nothing will give you immediate relief - usually 3-6 months on average, I think.

ICtampa · 11-25-2009, 04:03 AM

Hi everyone, thanks for your replies!

I guess I should ask my uro about pyridium...I'm on prosed right now and for some reason I thought that was the same as pyridium. Is pyridium a urine numbing type pill or something different for the pain? I don't really want to be on pain killers if I don't have to but honestly I think I'm past that point, I've read some good thing about valium suppositories but I don't know if my uro will want to go down that road this soon after a dx.

I would love to have some!

Thanks for the advice about the aloe and cystoprek(sp) I have looked into those and def think they are worth a try but for now I was going to try and manage my diet, with the elmiron and hydro and see if that helps for a little bit...but trust me if this plan doesn't work I will be trying many alternatives to get my life back

I'm thinking of acupuncture and PT to supplement my pain management in the near future if I don't get relief.

thanks again! best, kate

123456 · 11-25-2009, 04:58 AM

Your pains are normal. I just started PT and have been to several sessions. The PT works on all the muscles in that area, pelvis, lower back, thighs, butt, and even upper back (for me b/c I'm totally tense). I highly recommend working with a PT b/c that will actually help improve the problem where meds only helpy with the symptoms.

ICtampa · 11-25-2009, 05:05 AM

thanks you Michelle!

I thought maybe I was just going crazy but this disease is quite crazy in itself. I have an appointment with my uro on Dec 3rd and he told me to bring in all my questions and a log of my pain these past couple weeks since being diagnosed and I am going to def bring up PT!

Hopefully he can refer me! So good to know that we are not alone with this, I DO want to treat the cause and not the symptoms!!! I see that you are in tampa bay, I am close to there also, is there a good PT you would recommend? If not that's okay, just wondering

xo, best, kate

p.s- I am totally tense too, I like going for deep tissue massages because my neck and upper back/shoulders get all tight too...I'm sure this problem has just migrated south for me

123456 · 11-25-2009, 06:43 AM

I do have a recommendation for PT! Her name is Trisha Trinique and she's in St. Petersburg. She is amazing and knows a lot about the pelvic floor and IC. Even though the day after is a little painful, I usually feel great by the day after that. You can feel all your muscles starting to get happier. She also spends a lot of time with me which makes it doubly good. I'm not sure if I'm allowed to give out a phone number but she owns Seabreeze Physical Therapy. I'd be happy to give you more info if you PM me.

I really hope you go!!!

http://www.seabreezephysicaltherapy.com/

ICtampa · 11-25-2009, 06:53 AM

okay thanks for the info! I will def look into her, I am in palm harbor so thats not too bad of a drive for me. Of course my husband will be driving

can't thank you enough!, best, kate

123456 · 11-25-2009, 06:56 AM

It's worth the drive, trust me. I live in Pinellas Park, so it's only about 20 minutes for me. You'll love her! Please let me know how it goes when you go to your first appointment!

Briza · 11-25-2009, 03:11 PM

Hi Kate
When I have bladder symptoms they are almost always accompanied by back pain exactly like you describe....sometimes the back pain is worse than the bladder pain!
It seems to be a pretty common symptom. For me it is pain referred from my bladder. Like you I have used heating pads, but also have found good relief with cold packs.
Feel better soon.

ICtampa · 11-25-2009, 03:20 PM

Hi Bri,

It's crazy! I'm going to talk to my uro and give PT a try to loosen those pelvic muscles...the heating pad just isn't enough right now! This aching pain is way worse then the pain I feel while peeing or after! Have you tried any pain meds that have worked?

Thanks for confirming this is in fact "normal" haha

best wishes, and happy turkey day! xo, kate

Briza · 11-25-2009, 03:37 PM

I have much success with Tyenol w/ codeine tho I have gotten some *minor* relief from regular tylenol when that is all I have available.
And a good massage never hurt, always helps!

Diamic65 · 11-25-2009, 05:53 PM

Hi, Its a normal IC. I have pain in my back and in my side. Their are times I feel like something is squeezing my bladder. I hope you feel better soon.

Its not fun being sick on a holiday.

DIAMIC65