33FDiagnosed w IC, Chronic Back Pain Pelvic Floor Dysfunction w Hesitancy

[hoping4change]

Hi I've been newly diognosed for a year now and Dr. did recommend I follow the IC diet but never ate too many foods on the List anways.
My Dr. did say it should be ok to drink one cup of coffee in the morning but if it does bother me too eliminate it all together. I notice I have flares some days and some days it's fine with no pain at all. It dosn't seem to make a difference what I eat because I can eat the same exact thing one week and the same thing the following week and have No Flare for days, than all of a sudden have the worse Flares with Pain ever and no new foods were eaten.
I truly believe it's inflammation in the body. I have been dealing with chronic back pain for years and now have been newly diognosed with IC. It's horrible because some days the Inflammation in my back makes my IC worse, or my IC when my Bladder is cramping/burning and feels Hot and Inflamed it effects my Low Back really Bad. Than there are days just my back hurt or just my stomach/bladder hurts, it is so wierd and complex but each time I feel it's inflammation in my body.
I have hesitancy really bad where I have an awful urge to urinate but than I'm unable to go for 10-20min. My bladder won't relax.. It's opposite of having to do kegels or pelvic floor strengthening,,, I need to learn how to relax my pelvic floor muscles,, opposite of what I was doing for years for my Back Pain. Spine Specialist advised me to Strengthen my Pelvic Floor Muscles to build & strengthen my back muscles, now I think it has worsened pelvic floor muscles where they're doing tensing up all the time & not relaxing. It's like I have no control of my bladder flow. There are times when after 15min the Urine begins to flow than stops, than starts up again on it's own, it's terrible.
I have no problems with leaks or being able to ever hold it. I never had an accident or problems with losing control but just problems going, eventually I go but yet it just takes forever.
I have more frequeny & nocturia waking up 4-7 night at night time. I think it's because I'm in bed and finally relaxed. It's in the middle of the night when I don't have as much of a problem urinating. I think it's because my body is finally relaxed. It is so wierd
Massage makes back pain and bladder pain worse. If my husband massages my low back at night I wake up with the worst flare ever. Somehow it stirs up my Chronic Back Problems (facet joint arthritis, Bulging Disc and DDD L5-S1) I wake up Inflamed with the worse IC Flare and Back Problem ever! Does anyone else ever have worse pain after a massage?
Also right now I'm trying to get dissability with all my Health Problems but was denied twice appealing judge decision. I have many health problems with lots of records for years but because my age and got a judge that favors men more than women I got denied. So now I'm hoping after Appeals Counsil Reviews my case and now sees I've been diognosed with IC, maybe I have a chance.---->I have more health Problems not Noting leading mee to File for Disability,, Still waiting over 2yrs for California State Disability, now in Appeals Counsil reviewing Judge's decision. It's unfortunate that I can't work but disabilty has so many Rules/Regulations for Dissability. So unfortunate for many who really can't work and have paid into the Disability Sysem.
Meds now taking is Elmiron for 2nd month with no Relief, Atarax I've also tried with No Relief so Discontinued, Ditropan did seem to give me some Relief but Discontinued due to Side Effects (Sleep Paralysis),
I had lidocaine gel for my back pain and one day I had an awful flare of IC and rubbed the Gel on my Belly/Blader area and Helped Tremendously.
Cystoscopy came back Normal with no Sores/Ulcers but my Urologist said this is normal for many with IC so not to be discouraged.
I also take other Chronic Pain meds not mentioned that help me cope:.

[earthlady]

It can be really frustrating when the lower back muscles are weak and need to be strengthened but yet the pelvic floor muscles are already too tight and going into spasms. I was in pt for pelvic floor spasms and my pt suggested that I needed to get the pelvic floor muscles lengthened and relaxed before I started on any pelvic and lower back strengthening. I had myofascial release and lengthening done on the pelvic floor muscles and once this was relaxed I was able to do some strengthening exercises for the lower back and pelvic area. The biofeedback she did with me helped me to know how and when I was relaxing the pelvic floor muscles. I also get the same one day it's fine and the next day it isn't thing going on. Even if I eat the same thing and do the same thing it seems to have a mind of its own. So frustrating. Makes it hard to figure out what to do and what not to do. The Gelnique gel I use works very well for bladder spasms, but some days I don't need it and other days I do. I think the inconsistent symptoms is what drives me crazy.

[hoping4change]

Any info on Advice to Relax Pelvic Floor muscles

If theres any Advice the Therapist gave you that you'd like to Share would be Greatly Appreciated.
I feel the same way everything changes all the time and symptoms are never the same since our body does it's own thing.
If there's any strengthening techniques or stretching exercises and Treatments you had and would like to share Please Do, I went to Therapy before I had IC only for my back, now I hafto see if my Insurance Coverage and Drs (Known Hospital) has a Pelvic Floor Dysfunction Therapist to treat my Condition since I have seperate Issues that need work..
I just haven't went back to Therapy since it never really helped my Back Pain and now it cost me $20 a visit I can't afford. If I get the disability than I could afford to go to PT, Acupuncture, Chiropractor, and eventually seek Natural remedies instead of Medication that's eventually poisoning my Body.

[earthlady]

My therapist gave me stretches to do at home, but I'm not sure I could describe them in writing. The myofascial release work I had done was internal-inside the vagina. It was not the most pleasant thing to have done but I stuck it out and after just a few sessions she said the muscles were already relaxing. She worked a lot on my sacral area also to stretch out the muscles going down my butt. Warm baths twice a day in epsom salts and she taught me how to massage my own pelvic area. There are several books out, and I think two of them are listed here on the ICN. One I used is titled Heal Pelvic Pain by Amy Stein. I found though that it is best to be shown these by a therapist first because some of them strained my sacral area, so I needed to be shown how to do them without straining my lower back.

[123456]

My PT has me do this exercise where i lay on the floor with my feet on the wall at a 90 degree angle. Put your left arm above your head and in your right hand you have a balloon (believe me, I thought this was ridiculous too). Then, you take a deep inhale and blow into the balloon while pushing your heels and lifting your pelvis off the ground. You do this until the balloon is full. Do the whole thing 3-5 times a night (in a row) to strenghthen diaphram and pelvic muscles. I swear, it works.

[hoping4change]

This is what I've been reading about, it's actually something I might consider if they do that at my Drs. I have a Tens Unit and I emailed my Urologist this morning to see if they have a Vaginal Probe that I can use with it to Relax the pelvic floor dysfunction.. I'm wiling to try anything, Of course it seems very uncomfortable and a bit embarassing but at this point I'm willing to try anything..., I guess it's similar to a Pelvic Exam or Cystoscopy in the Drs. Office except a longer treatment.
Does it hurt during Treatment and after Treatment.... I had a cystoscopy done,, and they use the same Probe for all Patients, they didn't have different sizes for different patients, The scope didn't really hurt except when Probe went in and came out, there was Lots of pain and pressure.. but after it wa done for the next couple of hours it felt as if I was having Labor Cramps, I don't know if this is common but it hurt really bad. My Husband also had to pull over 4 times at a Fast Food Restaurant to use the Bathroom. I couldn't go but the sensation kept on coming as if I was going to pee in my pants. This along with the cramping for a couple of hours after the cystoscopy.
They did not find any ulcers or redness, just a normal Bladder, but after it hurt so bad when they filled my bladder with water I had extreme pain.
That's how I originally new I had IC was when I had an ultra sound done. They require you to drink (??) so much water before the Test and hold your urine for (??) a couple of hours to have the Ultra Sound done with a Full Bladder..
Originally I thought I drank a decent amount of water & urinating frequently was normal until pain went along with it.
For a couple of years I urinated so much I first thought I was diabetic.
Night time at first I could go about 8-9x night.
One morning I had the worst pelvic pain & from than on it never went away and would get worse when had to urinate...
I seen my Obgyn and she did a Pelvic Exam and examined inside of me and said Does this hurt? Does this hurt? Does this Hurt? Does this hurt? I answered "No" to everywhere until she went deep up inside and felt my Bladder. "Yes" it hurts right there, ow,, I thought she would discover a Cyst, since I have Polycystic Ovarian Disorder, I have no periods and can go for a year without menstruating. Anyways I was scared because I thought the Pelvic Pain I was experiencing was a Cyst or Cancer or something.
She said that's your Bladder, your pain is coming from your Bladder. I said what?
She said most likely based on all the Symptoms your having you probably have IC....
But we need to do a Ultra Sound just to make sure it's nothing serious..
She than gave me paper work on "Interstitsial Cystitis" and said do some research on line about it as well.
Well she scheduled me for the Ultra Sound,,,
I did research IC online and had almost all the symptoms. I never heard of IC before, Ever and kinda tripped out since I'm already dealing with Chronic Pain & thought they would find Cyst or something since I haven't had a period for 13months.
I also got usto the frequent urinating since I've dealt with it for over 3yrs & thought I just had a weak bladder.
Anyways I did research on IC and couldn't believe that I had most of the Symptoms.
So back to Ultra sound I couldnt drink the water the required me to drink, it was impossible, It was like they were making me drink Gallons and Gallons of water when it was only like a really Large Water Bottle I was supposed to drink, than hold it until after the Ultra Sound. I couldn't hold it Pain Pain Pain and I had to go,,, So I drank more water to make up for it before the Test and again I couldn't hold it, This happened all the way up until the test. I told the Ultra Sound Technician I was not able to hold my the reqwuirment of water since it hurt and I had to pee. Right before the Test I went in the Office bathroom since it hurt so bad, however they performed the Ultra Sound to make sure it wasn't Cyst or any other Issues to confirm it was IC.
Since than I been diagnosed with IC but it's a Diagnoses of Exclusion, since there's not a "Real Test" to determine IC, some people will have Sores/Ulcers and some will not. My Urologist was not able to tell me if Ulcers come after years of having IC or not, but explained every body is different and everyone's case is different, Since no two people are alike. Anyways drinking water for the Ultra Sound was impossible for me as an ICer.
The Chronic Back Pain is also wearing me down because now it's getting impossible for me to stand., I think my bulge disc is hitting my nerve because after standing in one place for a couple of minutes it's so awful I get a burning low back pain with a dep dull ache and heaviness that travels to my leg, sciatica I think..than my pelvic region begins to hurt, so I'm 33 and dealing with pain all the time...

[earthlady]

The vaginal probe hooked up to a tens unit sounds like a good idea. I actually had to go to an adult store to buy what they call a vaginal wand that you can use to access the muscles right inside the vagina to do my own massage. It's battery operated so there is vibration on the muscles. Kinda tricky doing it myself and I have to be careful not to massage right over the bladder.

[earthlady]

123456- This sounds like a good exercise to do. Do you know if it's ok to do if you already have tight pelvic floor muscles or only if your pelvic floor muscles are already loosened up?

[earthlady]

Taking a long slow walk seems to be one of the best things I've found for my pelvic floor. It relaxes the muscles and also seems to relax my bladder. When I was in a flair it was the last thing I wanted to do, but after about 10 minutes of walking everything would calm down. Other than calming down my muscles I think it helped a great deal by getting more blood flowing to the pelvic area.