well I guess it's official

[Hollyd]

My dear husband bought me a laptop so I can now get online because I purely cannot sit. Can't stand for more than about 20-30 min either unless moving around a lot. Insane.

The uro decided my uterine fibroid was the culprit (he's young and new) and tried to play gyn and instructed me to have it out (major surgery in area of bladder). I just saw a gyn specializing in fibroids last week who told me what I basically already knew...fibroids do not ever cause symptoms like I'm having and I would only be made worse by the surgery and he does not recommend it.

So that was the last exclusion and here I am.

He recommended a unique person who is an anesthesiologist who does pain management w/ acupuncture. I will see her. He also recommended a physical therapy practice that does urological stuff. They specialize in incontinence which is not my problem - so I'll check to make sure they deal in pelvic pain syndromes and high tone pelvic floor because I'm quite sure that is the major part of my problem.

Not so impressed w/ this young uro and just have the feeling he's not interested or knowledgable about IC so still waiting out one more month to get into see the person several other Australians recommended on this board.

Meanwhile my new GP who so far seems pretty good has me on slow release Tramadol which seems to allow me to take less of the 'top ups' he also prescribed of the same drug for "breakthrough" pain. My problem is sitting, standing, pretty much any activity you want to do outside the home causes pain even my maximum allotment of Tram. won't address. So I'm shut in unless I want to pay the price.

More than you wanted to know....just needed to say where I am at the moment.

Taking Moldwin's advice of 2 baths/day and watching very carefully not to strain to go. Taking MSM orally and gel and on the diet for a long time now.

Hope everyone is having a good day.
Holly

PS: I'm an American living in Australia and 51 years young.

[tigger_gal]

HUGS I feel the same, I still haven't determined what hurts more, sitting, standing, or moving.. whe are both in the same boat... I do hope that you feel better soon I will tell you that I take 20 to 30 mg of Flexeril for fibro and myofascial pan, it dose seem to work.

[Hollyd]

Thanks for the hugs!! That's so nice. And somebody who understands. Nearly in tears. and hugs back to you, it must be so hard w/ a young child to care for! I'm going to look up flexeril now. Thanks for the suggestion.

Holly

[Berkshire Road]

It's not more than we want to know at all! We all have IC here, and this is the one place you can always come, where no one ever gets tired of hearing about IC!

I wonder if you would do better on a stronger pain med than tramadol. If the tramadol is good enough to control pain when you lie still, maybe something stronger would allow you to sit or stand for longer periods. It's just a thought. We throw around a lot of ideas on the ICN. You're definitely on track about not straining; I am working on that myself and it is so hard sometimes.

I hope the physical therapy works well for you. I did not have success with that, but a lot of people do, so I encourage you to try it. My doctors recently started me on a muscle relaxant which seems to help with PFD, straining, and sleep. The only problem is that it makes me woozy, so I can't drive at the moment. I hope I will start to tolerate it better, because it's so effective, but I really need to be able to drive! Some days I feel like a prisoner; I guess you do too.

I'm 40, mother of a 12 year old, half-French and half-American and settled in the U.S. now. I've had my IC diagnosis for 2 1/2 years now, although I actually had the condition much longer. Feel free to PM me if there's anything you want to talk about off the boards, or just to say hi! If I'm well enough, I hope to travel to Australia in January with my sister. I may not be anywhere near you, but if the trip seems likely to happen, I'm sure I'll be asking for your advice.

Anyway, welcome to the ICN. You'll find a wonderful group of people here.

[Hollyd]

Thanks so much for the really nice reply. I wonder about the tramadol too because all it allows me to do is pretty much nothing and when I am in pain badly from trying to do more or even just things like accidentally sitting a bit while getting used to the new laptop on the couch, it lessens the pain about 15% and I just live w/the rest.

I'm just so scared of becoming addicted to painkillers. I'm taking this stuff every day. I don't know what the next step up is...I'm afraid it's morphine and I'm not writhing in pain but I would be if I did more and was before I had it. (Actually bit my arm the day I was waiting for the doc to get the scrip called into the pharmacy and my husband to get home w/ it. That's insane!)

But I can't accept a life this limited...that's crazy too.

I dont' know which muscle relaxer you're on but I find that these drugs tend to knock me out initially but I get used to them in terms of drowsiness. I hope thats so for you so you can get back in your car soon!

I'll PM you soon, thanks

[ICNDonna]

There are some smooth muscle antispasmodics that can help with bladder spasms without knocking me out. The one I prefer is hyoscyamine, but there are several different ones. Tramadol is very effective for me. If the pain is bad, I need to take two, but usually one is adequate. I get nauseated from all pain medications so I take a 25 mg phenergan tablet with the tramadol and I'm sure that also helps with the pain.

Sending warm healing thoughts,
Donna

[Kathy in Canada]

I guess its official

Hi HolyD,

Your situation sounds very much like mine. I developed pelvic floor dysfunction (pfd) and IC after pelvic surgery.

I, like you, can't sit for long. Standing/walking is also very limited. When my surgeon had no idea what was causing my pain and why I could not sit without getting severe pain, I decided to find out what the problem was myself. I read the info on this site about PFD including Dr Moldwin's interview. He indicated that he uses Valium 2 mg three times a day as first line treatment, also recommended physio, 2 baths a day, avoiding consitipation, etc.

The following has helped me:

1) Valium 2 mg three times a day (this made the biggest change in my pain) - I still can't sit for long still - it took me 3 1/2 months of the pfd to get my doctor to let me try the Valium. It does not make me drowsy.

2) doing 2 baths a day (before the Valium I sometimes needed to use a sitz bath in the middle of the night as well)

3) physio that specializes in pelvic pain (make sure they don't make you do kegel exercises - it makes you worse). They should not be treating you the same way they treat patients with urinary incontinence.

4) Home exercises from the physio including skin- rolling of abdomen and thighs

5) ice packs or heating pad

6)trying to avoid constipation with diet, meds, etc (a major problem for me)

7)trying to go for short walks

At 5 1/2 months post-op I was diagnosed with IC by way of the potassium sensitivity test. I am on Amitriptylline, Elmiron, bladder instillations (Elmiron, Lidocaine, sodium bicarbonate, sterile water). On IC diet. I use pain meds as needed.

It has been 10 months now and I still can't sit for long - my pain is better then it was before the Valium. I'm note sure what to do next or when I will be able to sit normally. Not being able to sit is very limiting as you know.

I would highly recommend the Valium and getting tested for IC. They go hand-in-hand. PFD makes the IC symptoms worse.

Good luck,

Kathy

[Hollyd]

Thanks for the wishes and ideas Donna. I just came home from the GP w/ some valium - 2mg. to be taken once daily in the morning. We'll see how that goes. I'll start tomorrow. You'll see some pretty bad typing I'll bet LOL.

[Hollyd]

Hi Kathy:-)

Hi HolyD,

Your situation sounds very much like mine. I developed pelvic floor dysfunction (pfd) and IC after pelvic surgery.

May I ask, was it major surgery? I developed IC symptoms one month before I had minor surgery (a D&C to rule out uterine cancer, everything was going wrong at once! talk about fear and anxiety! But the pelvic floor feelings didn't begin until after the surgery. I was also started on vesicare the day b4 the surgery which I took for nearly 2 weeks and stopped because it caused horrible retention and straining.

I read the info on this site about PFD including Dr Moldwin's interview. He indicated that he uses Valium 2 mg three times a day as first line treatment, also recommended physio, 2 baths a day, avoiding consitipation, etc.

I read it too and that's the path I am trying to follow. It was an excellent article and I've ordered his book. I'm doing the baths and other things I can do on my own and sorting out trying to find a good PT and working up the nerve.....but I could only talk my GP into 2mg. once per day on the valium.

I take 1.5mg of clonazepam at bedtime just for insomnia and anxiety long b4 all this started. I have no pain or need to go to the bathroom during the night ever. I also take 100mg of Trazodone as part of my insomnia cocktail, I don't know if they are synergistic or what but I sleep like a baby. I can even be in considerable pain before bed and once those kick in I'm totally fine.

My GP thought I was taking the long acting (12 hour) tramadol he prescribed for me twice per day but I explained to him what the other stuff is doing for me and that got him to give me some valium. I tried moving .25mg of clonazepam to the day but it didn't work at all.

- it took me 3 1/2 months of the pfd to get my doctor to let me try the Valium. It does not make me drowsy.

just shaking my head in exasperation for you.

(before the Valium I sometimes needed to use a sitz bath in the middle of the night as well)

Oh no!

3) physio that specializes in pelvic pain (make sure they don't make you do kegel exercises - it makes you worse). They should not be treating you the same way they treat patients with urinary incontinence.

I know! The place my gyn recommened specializes in incontinence but their website also mentions non-incontinence issues that they treat but no mention of IC. I"m going to grill them before I let them touch me. Everyone says it hurts at first and maybe for quite awhile so you would have no way of knowing if it's productive pain or wrong treatment. That's what's so scary to me.

At 5 1/2 months post-op I was diagnosed with IC by way of the potassium sensitivity test. I am on Amitriptylline, Elmiron, bladder instillations (Elmiron, Lidocaine, sodium bicarbonate, sterile water). On IC diet. I use pain meds as needed.

It has been 10 months now and I still can't sit for long - my pain is better then it was before the Valium. I'm note sure what to do next or when I will be able to sit normally. Not being able to sit is very limiting as you know.

*sigh* you're working so hard and taking so much, I would wish that that resulted in at least being able to sit. I feel like I could cry for both of us.

I would highly recommend the Valium and getting tested for IC. They go hand-in-hand. PFD makes the IC symptoms worse.

I had a cysto and hydro but it was done by the gyn when he did the D & C. He said it all looked perfectly normal. Everything else has been ruled out. Either the gyn (not the one I'm currently seeing because there were things about that one I didn't like) doesn't know how to look properly or I'm one of those w/out the characteristic bladder. Probably the next uro I try will want to have another look - oh joy. Was your potassium test very painful?

Thanks so much for all your ideas and suggestions. It means a lot to me that you took the time.

If all my attempts at html failed I think I won't be fixing it all up LOL. I'll apologize now!

Holly