So, less than two years after having two pelvic prolapses repaired - I need more surgery for bladder and bowel prolapses. My uro-gyny believes these weaknesses are related to the Sjogren's - and having had three babies of course. I'm relieved in a way that she thinks she can help, but a bit gutted that this is happening again. I willhave the surgery in early July.
I know I have asked this question before, but we have more new people here since then, so, how many other ladies have had recurrent pelvic prolapses, and have the doctors linked it to the Sjogren's?
Kathyx
Hi Kathyx:
I'm so sorry to hear you have to go through this yet again.
I had the same surgery in January 2009, and so far it has held up. But my surgeon (one of the best gynecologists in our city) said going into it that she suspected the tissue would be very frail due to the Sjogren's. She definitely tied the Sjogren's to the condition of the connective tissue. When I spoke with her afterward she said the tissue was even more delicate than she anticipated, and she had reinforced it throughout my abdomen. The surgery took longer as a result.
At my last check-up a month ago, there was no evidence of further prolapse. She believes that the reinforcing helped a lot. The way she described it, it sounded like the way my grandmother would reinforce seams by stitching over them a couple of times. She said in some cases she lapped the tissue back on itself and stitched it together so the double layers would strengthen it.
I know that sometimes surgeons use a kind of mesh to reinforce the tissue, but the place you stitch it to has to be strong for it to be effective.
Take care,
Genko
Thanks Genko
I wondered how your repairs were holding. My surgeon is confident she can do the repairs without mesh - in fact, she believes that mesh in the postrior compartment can cause more problems than it solves. I do have mesh further up the rectum from my intussusception, and that seems to be holding well.
Kathyx
My sister doesn't have Sjs, but she has RA, MS, and fibro. Last fall, she had a bladder and bowel prolapse corrected by surgery. The surgeon took muscle tissue and reinforced the thin spots. So far, it has worked well, once the bowel painfully sorted itself out. Interesting to think it could be AI related.
hi Kathy :)
I'm really sorry these problems have re-ocurred. (((( hugs )))
I hope the surgery goes well. Pity you have to wait till July!
Take care - Scottie :)
Thanks for your kind words ladies, they mean a lot.
Scottie, I needed that hug - thank you. Although I have to wait 'til July, I dont mind, as it gives me time to get used to the idea, and to prepare at home and work for it. Also, we are taking two of our little grandchildren away for a week in June, while their mum and dad go on honeymoon. So, I really didn't want to be recovering from surgery at that point.
Kathyx
Haven't had any prolapses, but then I have never had any kids. Often ladies with SS tend to have a connective tissue disorder as well as the Sjogrens. I have. I was diagnosed with Ehlers Danlos Syndrome back in 2005. I have very flexible joints that have dislocated easily in the past and also I have trouble with wound healing. I only have to flake a tiny piece of dry skin off my arm and I bleed for about an hour.
WildThing
That's interesting: today I had a physio assessment, as I'm having huge problems walking on an incline and climbing stairs. I knew I had hypermobile knees and my rhuemie had wondered if my hips were involved too. Today the physio confirmed they were. In fact the left one is a lot more mobile than the right one, which could be contributing to my muscle problems. He also believes I have some crushed discs at the very bottom of my back. I'm going to work with him to see if we can improve things.
Kathyx
Would it be possible for you to see a rhuematologist that specialises in conective tissue disorders? I don't know if you are like me in this way but my pelvis tilts way too far forward pulling my shoulders back and my butt out. I have dislocated my left hip a few times too and have very flat feet.
I'm seeing a new rheumie in the summer, so I'll see what she has to say. I too have flat feet, and if I don't wear the orthotics, I feel as if I have permanent shin splints in one leg. I told the physio about that yesterday, and he's going to see if he can help me with it.
Kathyx
Kathyx,
I'm so sorry for all you are going through and wish you the very best for your upcoming surgery. Sending a big hug your way.
Anna
Well good luck with the rheumie. I have to wear orthotics as well and one of my feet is so flat it's deformed and I get shin splint-like pain in my leg even with orthoitcs. All this sounds suspiciously like Ehlers Danlos to me so would be worth mentioning to your new rheumie. I wish you all the best with that.
I have had vaginal and rectal prolapse - no surgery; but ended up having an embilical hernia surgery repair w/ mesh. I never thought about it being connected with Sjogrens. Hmm...interesting.
Wednesday is my prolapse surgery date, and I'm getting a bit jittery. My perineum will be repaired at the same time. I will also have a botox injection to help with the bms.
My family are lovely, but I've had so many surgeries in recent years that they expect me to take it in my stride. But it doesn't get easier, and I really have to work hard to regain lost ground with my general fitness afterwards. So, wish me luck. I'll let you know how it goes.
God bless.
Kathyx
HI kATY, GLAD TO HEAR YOU WILL GETTING THE PLUMBING FIXED. i JUST DECIEDED YESTERDAY THAT ENOUGH WAS ENOUGH, I'll SEE MY DR. ON AUG 7. YOUR POST IS ENCOURING ME.
I'll BE PRAYING FOR YOU TO HAVE A CONFORTABLE SURGERY AND GET WELL QUICK
MEBOG
Thanks Mebog
... and good luck for the 7.
Kathyx
Hi, Katy! I'm new to the Forum, and just read your messages and replies. Today is the 18th, so you've had your surgery by now and I hope all went well. I feel very validated by what your doctor said. I had a uterine prolapse about 10 years ago and had a hysterectomy. Then I had a bladder/bowel prolapse and surgery to fix. Then about 8 months later the bladder prolapsed again! My excellent gyn used mesh the next time. That was about 3 yrs ago and now I am having it again. So it's Sjogren's! It's kind of a relief to know finally. Thanks for sharing so candidly. I'll tell my doc and maybe we can figure out a better approach to fixing what's wrong. Let us know how you are doing. Sorry you've had to go through this. :)
Hi Kathy - just wanted to say I'm thinking of you as you recover. I hope you are as comfortable as possible and are getting sufficient pain relief. I'm sure you must have wanted to stamp your feet and shout "It's not fair!" - such a lot to have to go through all over again.
Hoping that this time it's for good and you get your atrength back quickly. At least you are not missing any beautiful weather while you are laid up!
Sending love :) Ailsa xx
Diane, thank you for validating my experience too - you are one of the few ladies I know who has Sjogren's and has had repeat prolapses. So far, I've had surgeries for: rectal mucosal prolapse, intussusception, rectocele, cystocele and this last one was a combination of enterocele and rectocele. I had mesh for the intussusception, but not for the others. I'm praying that everything stays where it should in future.
My surgery went well on Wednesday: the surgeon said she hadn't revised such a long perineal scar before, but the underlying muscle looked good, so that should help prevent further prolapses. The botox has been successful, and I can now have regular bowel movements. I'm sore, and very tired, but glad to be done. I'm to rest as much as possible, and am not allowed to work for six weeks, so hoping for some sunshine to relax in.
Thank you for all your kind words, and positive messages.
God bless.
Kathyx
So glad your surgery went well, now rest as you are suppose to. Sending a hug for you!
Cricket
Hi Kathy, it seems I am rather late in coming into your thread, so just want to say how pleased I am that you have had the op, and are now recovering, without any set backs I pray! I am still managing my 2nd prolapse ok, but one thing is I can pee for Britain!! which I am pretty sure is down to the prolapse. I hope I can live it out now , as at 76 think an op would kill me first ! Good luck and health to you, Hugs Dolly x
Thanks Ladies
I know I have to riest, I just can't risk any more prolapses, so I'm doing as I'm told.
Dolly, do you think a ring pessary might help with your prolapse? That could be done as an outpatient.
Hugs
Kathyx