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Suspect my Suspension has failed Suspect my Suspension has failed

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  #1  
Unread 04-26-2005, 08:26 PM
Suspect my Suspension has failed

Hi everybody - its been awhile since i've been here. I had a hyst + burch + uterosacral ligament suspension + paravaginal defect repair almost exactly 3 yrs ago. I've begun to have some problems and would appreciate hearing from anyone else who had similar problems after a similar surgery. I'm gonna run down the timeline here:

January: intense burning and pulling pain in my right groin, went to the ER and was sent home told i had a muscle strain and to follow up with gyno if it got worse or persisted. Needless to say i didn't.

The groin pain and burning has been intermittent... maybe 1-2 days every two weeks or so. It began to become daily about 2 weeks ago... and the pulling pain on the inside of my thigh/groin has gotten worse.

Well this weekend was rough, I couldn't stand or sit for more than a few minutes before the pain would get bad and lying down is the only thing that helps (sometimes). I called and made an appt with the gyno's office and have that appt on thurs.

I've noticed in the past couple of months that when i cough or yell at my kids or push or pull anything, the pressure and pain comes right back. I can feel something traveling down in my pelvis. I've felt around and nothing seems amiss. I was given a pessary pre hyst and tried it last week, but it didn't help.

Fast forward to today: I was great this morning, no pain and did lots of house cleaning etc., afterwards i showered and the groin pain came back and with it that 'oh so familiar' lower back pain that I had from the prolapse (turned out to be the enterocele and vaginal vault prolapse which wasn't diagnosed til surgery). I've taken some tylenol and celebrex that has seemed to have helped a bit and i also reinserted my pessary.... and the backache is gone.

To rewind a bit: I was tested from one end to the other with urography, defecography... you name it and I did it on demand for a radiologist. None of these tests found anything. The only reason my surgeon went ahead with surgery was because the pessary relieved the back pain. I was vindicated when they opened me up and found 'classic prolapse' i.e. the enterocele and vaginal vault prolapse.

Well now that I've cryed my eyes out, thinking about all the tests and doctors i saw before my surgery, and being told it was in my head beforehand. Needless to say all the familiar feelings of frustration have come flooding back... I thought I had my life back. I've been back in college but had to take off this year because my youngest son developed epilepsy, despite that I have felt wonderful, like a whole person again.

I'm 99% sure that whatever was causing the pain before surgery is back. Since i'm able to pee just fine I'm thinking its the uterosacral ligament suspension that has failed or part of it.

Anyway, if anyone has had a similar experience I would appreciate hearing your story. Mostly I'm sick at the thought of repeating all those utterly useless tests and getting back on the 'pelvic pain' merry-go-round, but the thought of going thru this debilitating pain again is equally sickening.

Thank you ladies, as always you are wonderful.

Diane

P.S. I had a paralyzed colon for a year after my hyst. The only way I could get anything out was with phospho-soda (i.e. bowel cleansers) Fiber, and all the other crap (pun intended... lol!) made everything worse. Which led me to a specialist in Chicago that found my anal sphincter muscles were badly damaged from the birth of my first son (3rd degree tear). He did an ultrasound and found the sphincters were only 1/2 the thickness they were supposed to be, and that it could (and would likely) lead to bowel incontinence at some point. Anyway I had to find a way around the constipation myself... and did! I cut out all carbs (i.e. breads sugars pastas) and turned to a diet of lettuce, veggies, cheese and meat... and up until now everything has been good. Although I have to manually support my rear in order to get a BM out... from above and not from inside my vagina. This has been acceptable since I was recently back to 2-3 bm's a day (very comfortable for me) without pain. Anyway, this bowel issue and the new pain has me concerned that I'm gonna get the 'Your case is too complicated for me to help' speech from the gyno on thursday. If I were a doc... I wouldn't touch me with a 10 ft pole (sigh)
Again, thank you ladies.
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  #2  
Unread 04-27-2005, 06:02 AM
Suspect my Suspension has failed

Hi Dianedaisy,

I'm so sorry that you are going through so much again. I can't help you with anything regarding your surgery and problems either beyond giving you a big because I've been on the "it's all in your mind, test after test with no definite results" wagon for best part of 15 months post op. I relate with you on that side of things and it's tough for sure. Mine is a different problem but similar on that issue. Only in the last month has my low back pain and sciatica that I've had since my surgery been diagnosed as osteoarthritis of the knee!! (I don't figure it either!!) I still face yet more tests to find out if this osteo is actually multi-sited which does make sense to me. Keep on at your drs and hopefully soon they will get to the bottom of it for you. I hopeso.

Hopefully someone will come along who can offer you more helpful advice and can help you more soon.
  #3  
Unread 04-27-2005, 09:20 AM
Suspect my Suspension has failed

So sorry to hear about the problems you are having. Unfortunately prolapse is a problem that tends to recur.

If the problem is with the vaginal vault suspension, there are other procedures that can be done. The gold standard is probably still the sacral colpopexy, but there is a new one called Posterior IVS which is somewhat similar to the TVT procedure for stress incontinence. (You may want to check out the website of Drs. Miklos and Moore in suburban Atlanta. I believe the URL is www.tvtsling.com.)

Your best bet is probably a urogynecologist, who deals with these problems almost exclusively.

There is a website by a group called UPRISE which deals with prolapse issues. You can get wonderful advice and empathy from these women. (http://prolapse.hyperboards2.com)

Best wishes to you.
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  #4  
Unread 04-27-2005, 10:41 AM
Suspect my Suspension has failed

Thank you so much for replying... right now I could use all the hugs I can get!

Musk2U- I had lots of hip and thigh pain for the year following my surgery also. It ended up being an angry psoas muscle from a knee problem also. Since last summer when I had the knee scoped I have been utterly pain free! I had chipped the articular cartilage and needed a lateral release. If its not one thing its another eh? LOL!

Bonnie - My original surgeon is a UroGyn but appts for her are booked 3 months in advance so my appt on thursday is for another doctor in her group. I'm hoping I can explain to him whats going on and he'll relay it to her. She was wonderful and the 6th doctor I saw before my first surgery and as far as I'm concerned an angel sent from heaven. The problem is, she's probably busy doing good work on other women in need... I'll have to wait my turn.

By the way, hubby and I did another 'amateur pelvic exam' and something is definitely bulging where it doesn't belong... definitely different from last week when we checked. I have quit passing gas and the backache has become constant. I have two priorities on Thursday:

1. get pain medication, because I have things to do... flowers to plant and rooms to paint, not to mention keep up with my 4 and 5 yr old little boys. I'm not going to grit my teeth and bear it like last time.

2. beg and plead to see my urogyn sooner vs later AND avoid doing those stupid tests again. They served no purpose before my original surgery other than to drive up the cost of my whole ordeal.

Thank you again for replying... this place was the only place that validated my concerns pre-hyst and It always feels like home. =-)

Diane
  #5  
Unread 04-27-2005, 01:23 PM
Suspect my Suspension has failed

So glad to hear that you already are a patient of a urogynecologist. I long for the day when there are more of these trained and practicing so that the waits aren't so inordinately long.

I hope you get the answers you deserve -- and sooner rather than later.
  #6  
Unread 04-27-2005, 02:47 PM
Suspect my Suspension has failed

amen bonnie - i didn't even know these problems were possible before i found my surgeon... i was told by 3 gynos, a colorectal surgeon and a MALE urologist (we have a not-so-nice nickname for him) that nothing was wrong and i should quit obsessing about not being able to pee or poop or stand without pain.

At every opportunity I educate my female friends on these problems... I'm more angry that the average gyno isn't at least familiar with the CLASSIC symptoms enuf to check... all i was lacking was a pelvic exam while bearing down.... none of the previous docs did that.

lazy if you ask me. ah wel, i've learned to take notes in detail and command any doctors ear now... i'm a paying customer and I won't tolerate the brush off any longer.

Thank you again, venting this stuff if more therapeutic than i can say.

Diane
  #7  
Unread 04-28-2005, 07:21 AM
Suspect my Suspension has failed

An IDEA!!!

Here's what I did to find my cystocele with my Dr. Instead of him checking you while you're laying on the tabel....STAND UP and let him ck you that way.

Sometimes when you lay down, things feel better and slide back into place....when you stand gravity takes hold and he can then feel with an exam what you are feeling inside.

It's a bit unconventional but it worked for me. Don't be shy about this..it works!
  #8  
Unread 04-28-2005, 10:18 AM
Suspect my Suspension has failed

Lulu - I will be doing just that. But now that I've checked (myself) the past few days... its glaringingly obvious that something has 'caved in'. I'm 99% sure its the bowels falling since I can't feel my bladder (and its coming from the top, not the front).

I'm up early... already fretting about what is going to happen. I was trying to be patient but left a message for my UroGyn to please call me, I need to talk to her to find out 'what next'. I think I'm gonna try and keep busy until the appt to try and keep from FREAKING OUT... like i feel like doing ... lol!

Thank you ladies, I will post as soon as I get back and let you know.

Diane
  #9  
Unread 04-28-2005, 12:09 PM
Suspect my Suspension has failed

Okay this is just venting....

My surgeon's nurse just called... she got huffy with me and said we don't have any appt's. I told her i understand that but I'm in pain, and need to see someone sooner vs later... and thats why I made an appt with another gyno in the office (my surgeon is a urogyn). She got very condescending with me and said that seeing another doctor instead of the Urogyn just makes things more complicated...

I forgot to mention in my earlier post that I called my surgeons nurse back in January to tell her about the burning in my groin... and what should I do. Well she said she can't do anything and I should just go to the ER if I have pain. So if my calculations are correct I would be having an appt WITH my surgeon today (instead of someone else) had I scheduled it back in January.

So basically this nurse called to tell me that I can't have an appt and I shouldn't be seeing anyone else. Nice.

Anyway, thank you for reading and I'll post again tonite after the appt with the non-urogyn gyno (who I shouldn't be seeing) lol!

Diane
  #10  
Unread 04-29-2005, 12:47 PM
Suspect my Suspension has failed

Well I had my appt -

To make a long story short, my urogyn was there to see me instead of the other doc.

She checked me and said she didn't find enuf prolapse to warrant opening me up again. But, that I very well could have blown a stitch and that could be causing my pain. I had some back probs awhile back and she wants me to go back to the pain clinic for epidurals to see if that helps the pain... and I have a 4 contrast defecography set up for next week to look for enterocele. She also gave me pain meds... tramadol. They aren't working very well, which tells me it may very well be nerve pain from my back. Ah well, back on the merry-go-round i go! Thanks for the replies and I'll keep you posted to how everything goes.

Thanks!
Diane
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