Anybody have severe pelvic floor dysfunction?

[skeetor]

Hi, I was diagnosed with IC in June 2006 though I think I had it since summer of 2003. I was told I had a large fibroid on a CT scan and had a total hysterectomy in Sept. 2003 with ovary removal. It turned out to be adenomyosis (endometriosis in the uterine muscle wall) but I still had the same symptoms continue - low abdominal/bladder pain, back pain, etc. Lo and behold it was probably IC all along.

Anyway, I'd like to hear from anyone who has IC AND pelvic floor dysfunction and how they manage the pain and spasms. I went to a physical therapist who specializes in PFD for 6 weeks but once the PT sessions were completed it's back with a vengeance. These are the symptoms I have and was wondering if it goes along with IC and PFD:

Pain worse in the morning when wake up
low abdominal and bladder spasms
pain that moves around in the abdominal area
low back pain, stabbing at times
nausea
abdominal bloating and swelling
light-headedness
fatigue
joint aches
eyes always red from chronic pain
sometimes muscle twitches in the buttocks, upper thighs and calves.
occational urinary frequency

What is effective for your bladder spasms? How in the world is it possible to work full time with all the medications one has to take? I've tried Elmiron - no luck. Have had so far 3 DMSO treatments with mixed results, will try up to 6. Can't take Elavil because of hypothyroidism. Lyrica 75 mg at night helps alittle bit. Dialudid 2 mg takes edge off pain but not much.

If you have symptoms similar to mine I'd like to hear how you manage them and how you manage working full time. I'm thinking of going part time because it's getting more difficult to drag in to work five days a week. Thanks

Renee

[muxerr012]

Hi Renee,

I had never heard of pelvic floor dysfuntion until I joined this ICN website a few days ago. But I have many of the same symptoms as you do! I had surgery for endometriosis 6 years ago. 4 years ago I was diagnosed with 3 very large pelvic tumors and had a partial hysterectomy. That is when my bladder began giving me trouble. I was still in the hospital recovering from the abdominal hysterectomy and my doctor kept asking ME what was wrong with me and why I felt such pain trying to pee!! Like it was something I was doing wrong. I have been living with pain for 4 years and finally went to the GYN in May and they found lots of blood in my urine. I was also diagnosed with atropic vaginitis and put on estrogen. Had a cystoscopy in August and they diagnosed IC. My doctor handed me a pamplet and told me to see a UROGYN specialist. I have put it off but it's time I go. I was bedridden this past Saturday with a heating pad. It started out with burning acid upset in my throat, went to stabbing pains in my stomach, frequent urination, and throughout the day it went to the bottom of my pelvic area and felt like a jack hammer. I have no pain meds and I just laid there thinking about going to the hospital. I used tylenol and heating pads all day. Sunday was better and I could actually walk around. I'm wondering why no one has ever mentioned PFD to me with all problems I've had. If you read these forum messages from others you will see alot of other women who do have this problem too. Maybe one of them can be more help to you than I. I struggle with getting up and going to work some days and I do totally understand. However, cutting back on my hours in not an option for me. I almost feel it's better to hang in there for as long as you can. I find the symptom:smile tee s do come and go. Some days are good. I hope you get some relief and feel better soon.

Gina
Arlington, TX

[muxerr012]

Hi Renee,

I was thinking about your post while I was getting ready for work and forgot to mention something to you that has helped me enormously with joint pain. I had an MRI and was diagnosed with osteoarthritis about a year ago. I believe all these disorders seem to follow a common thread with those of us who also have IC. Anyway, my doctor kept telling me to take Omega 3 vitamins (fish oil) and I finally started taking them a few months ago. It takes a few weeks or longer to feel improvement but I am telling you this has helped me SO much!! Omega 3 is a miracle vitamin in my book!! My neck, back, fingers and knees don't ache anywhere near what they used to. It's been a profound relief to me! I also began taking calcium with vitamin D and have not had any aches in my bones as I did before. Granted I'm 45 and going through menopause. Been severely depleted of estrogen, but I honestly believe ALL women of any age will benefit from Omega 3 and calcium. Ih ope this helps you!!

Gina
Arlington, TX :smile tee

[verdicries]

hi,
i have SEVERE pfd and have to cath myself often cause i can't pee. i also can't have a complete bm...it's THAT bad. i'm supposed to try pelvic pt but it is hard w/a baby, no car, and no money...and the pt is an hour away :(. i was on soma for spasms, which helped a bit. but massage is supposed to be good. since u already did pt didn't they teach you self-release/massage? deep breathing sometimes helps me.

good luck,
tracy

[bigred]

I am a PFD patient. I finished a round of months of PT with the best PT in the world. I have been release from her. She gave me exercises to do and also tought me how to use my thumb to message my own Pelvic muscles. It was 8 weeks ago that I had major abdomenl surgery. The last time I saw her was when she stopped by my hosp. room to gave me a gift and say hi. I didn't have any pfd until last week. I don't know if it coming back because of no pain meds. or sitting all this time or what ever. I am not allowed to exercise yet or put anything inside the vaginal area for at least 4 more weeks. After that will see if I can control it or if I need to go back for more.
I hope you find relief soon cause I know its no fun. I also ordered a pillow from the IC network to help with PFD pain.

[skeetor]

Thanks to all that responded. I wish peace and good health to all. Gina, I just wanted to tell you that I also have acid reflux, actually "LPR" where the acid reaches up into the back of the throat. This started first before the IC. So, I think there's definitely a connection between this and the bladder irritation. Maybe it's a smooth muscle inflammation? My urogynecologist seems to think so. Has anyone had a flare with Nexium?

[muxerr012]

It is so apparent how many of you out there have really done your homework on all these disorders-WOW! Many of you have mentioned conditions or abbreviations for disorders that I've never heard of. Renee, what is LPR (acid reflux)? I've never had digestive problems before. My IC was diagnosed a few months ago but like many of you I think I've had this disease for many years (fibroid tumors, endometriosis, hysterectomy, chronic fatigue, insomnia, dry eye, atrophic vaginitis, the list seems neverending)! I have lost 22 pounds since May of this year due to extreme nausea, diahrrea, and general stomach upset. This past month I have a constant burning in my throat up to where my adams apple would be if I had one. What the heck is this?

I have not yet made my appt with the UROGYN I was referred to but I can not wait any longer. I went to the list of IC medical providers on this website and found a doctor who had an interview that you can read. Her name is Elizabeth Vliet in Bedford, Texas. She talks about how many patients came to her with multiple disorders and were on 7-10 diff medications. She believes these disorders are all related to hormone levels. She does blood testing and finds incredible results but says that 60% of the doctors will not do this test! She has been able to take her patients off many of the medications by doing these tests! She talks about so many conditions and I would reccomend anyone with IC to read this transcript on this website with her interview. I live 7 miles from her office but just found out she is not on my insurance and I'm so bummed! I plan to take a copy of her interview with me to the UROGYN I was referred to and see what he has to say about her theories. I hope some of you read her interview and that it helps you weed through some of this medical mumbo jumbo. I don't want to be a person walking around with 5 disorders/diseases with no cure and with 10 diff meds. I believe there is an answer and if we keep digging we shall find it!

Gina
Arl, Texas:woohoo:

[JanL]

Hi! I too had a hysterectomy (they suspected endometrosis because I had so much pelvic pain and painful periods) and bladder suspension in 1998. Turned out to be adenomyosis. Exactly 3 months later, I started with the IC symptoms--back and forth between Gyn and Uros. Finally went to a urogyn who re-did my suspension. I have had SEVERE pelvic pain since then. I have been to two different PT's. The first did a lot of kegals--not great for me since my muscles stay contracted most of the time. The second was great!! She taught me a lot of myofascial release techniques and some stretches and exercises. That has helped a lot. My uro now gives me some pain meds for breakthrough pain and we have been playing around with Neurontin and some others for helping with the pain. Neurontin seems to help the most, but I can get really cranky when it is time for my next dose. My uro has also given me B&O suppositories and vaginal valium tablets for pelvic floor spasms. I did not think these were doing much until I stopped using them--wrong move. Anyway-- some of the tricks of dealing with PFD are just trial and error. I am sorry that you are having to deal with this. NO ONE should have to have this crummy disease, but we do so we just have to have a bag of tricks to use when we hurt really bad. Feel free to come on here and ask questions anytime. These ladies (and men) are wonderful.

Janice

[skeetor]

Janice,
Thanks for your input. I'm going to ask my urogyn. for B&O suppositories and/or vaginal valium suppositories to try. The myofascial release taught by your physical therapist - is it internal release or external massage? Just curious.

Gina - LPR stands for laryngeal pharyngeal reflux. The upper esophageal sphincter is affected and doesn't function properly, unlike GERD which is the lower esophageal sphincter that is affected. I'm an RN so sometimes knowing alittle more can be dangerous! This web site is a great comfort to me. It's lonely out there when nobody understands what you're going through. Hang in there my IC sisters!

Renee