Rubbish connective tissue

[Katybarstool]

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

[genko_b]

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

[Katybarstool]

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

[Sooki]

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.

[Scottietottie]

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 

[Katybarstool]

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

[WildThing]

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.

[Katybarstool]

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

[WildThing]

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.

[Katybarstool]

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

[ohiolady]

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

[WildThing]

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.

[artsyamerican]

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.

[Katybarstool]

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

[mebog]

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