12weeks post robotic sacrocolporectopexy
Posted , 3 users are following.
Hi everyone, I am new to this site (though I have spent hours perusing and wish I had found it earlier....so much helpful info).
I am now 12 weeks post robotic sacrocolporectopexy with mesh due to reoccurence yet again of rectocele,cystocele, vault prolapse plus intersusseption.
Previous history of TVT (tape), followed by
2 cystoceles, 3 rectoceles (one with mesh, all vaginally), hysterectomy (vaginally), and the latest procedure abdominal/robotically with Y shaped mesh.
Prior to recent sacrocolporectopexy the 5+ repairs all failed at some point leaving me with pain, urinary incontinence and obstructive defecation syndrome (including Bile Acid Malabsorption Diarrhea diagnosed 15 months ago)..previously told it was IBS for 30+years!! .
I am still swollen in abdomen and undercarriage..with that telltale heavy feeling. I get lots of little jabbing/nipping pain in all areas but also at the robotic port sites (im assuming its tissue healing?).
I still have not had a post Op check up (should have been one at 4 weeks!!), somehow i got missed and earliest appt mid March!. In fact I have not even seen consultant since before the Op!!
I cant seem to find any info with this specific surgery title and hope someone here has any advice from similar procedures. I am taking as much care re lifting/straining etc as i can but had hoped to be less incapacitated by now. Thank you in advance of any info forthcoming.
0 likes, 8 replies
Imnotadoctor Guest
Posted
Hello!
My goodness you've been through a lot. I haven't had your most recent procedure so I can't help you with that.
I had an anterior repair with hysterectomy then 3 years later a posterior repair with sacrospinal fixation. They are big operations & it does take a long time to heal. I was told never to lift anything heavy again as once you have a weak pelvic floor you are at risk. I already think my bladder will need doing again at some point. If you feel very uncomfortable then I would try and get an earlier appointment but it can take months before you start to feel more normal again, as I'm sure you know! Accept all offers of help and don't try and do too much. It's interesting that you mention the BAM test as I recently had that, although mine was negative. It turns out I have SIBO - I don't know if that's related to any of the surgery?
One of the most helpful people I spoke to was a specialist female physiotherapist, if you can find one of those in your area they might be worth speaking to. Are you in the UK?
Don't worry you are not on your own, hope you feel better soon.
welshgirl67 Imnotadoctor
Posted
Great to hear from you innotadoctor.. xx
Guest Imnotadoctor
Posted
Hi imnotadoctor,
thanks for your kind reply. I am in the UK.
Yes i am definitely taking all help offered from family and friends. I suspect with my earlier surgeries i returned to "normal duties" and work far too soon...alas i went by my consultants recommendations and pressure at work , not realising (or being advised of) the potential for reoccurring prolapses. How i wish i had found this site years ago, so much advice and understanding!! However im keeping everything crossed (including my legs.... Thankfully i do have an incredible and understanding hubby!!)...in the hope that i will have a more comfortable life once fully healed.....
Just for info,I was diagnosed with BAM after my colorectal surgeon sent me for a Seh-cat scan. This condition is not very reasearched as yet. The reasoning for the test (leading to the proper permanent medication at last for the BAM), was to help control some of the symptoms of it that were making the prolapses worse (mostly bile acid stools up to 10 times day/night and constant painful bloated abdomen.
The BAM has been exacerbating the rectocele and inner prolapses, and i needed to try to get that issue under control before my latest procedure could be done.
It is so reassuring to read other people's experiences in similar situations, both good and bad, (not that id wish prolapses/pain etc for anyone) and i have picked up many good suggestions since finding this site.
Alas....i had been "overlooked" re my post Op appointment and mid March is the earliest they could offer but at least its booked now.
Im sorry to hear your bladder may need doing again...but our instincts are often the best ones to follow....we know our own bodies much better than most!
I have'nt heard of SIBO? But would be interested to know if you wouldn't mind.
Sorry for such long post..... again....
And my thanks again for your reply.
Imnotadoctor Guest
Posted
Hi,
SIBO is small intestinal bacterial overgrowth. The symptoms can be similar to BAM which is why I had both tests. The SeCHAT was negative for BAM but the hydrogen breath test for SIBO was positive. Unfortunately the (very expensive) antibiotics didn't make much difference to me so I am now doing the FODMAP diet with a dietician. For years I thought it was IBS but maybe not? Also having the rectoenterocele didn't help! Early days with the diet so I'm not sure if it will help (I don't need to lose any weight just find out by a process of elimination what's upsetting my system). If you look SIBO up there is some info online if you are interested.
I should say I could eat just about anything before I had surgery but these "intolerances" have started since. I've seen so many doctors etc I feel almost medically trained myself (I'm not!). It's a long, slow process & sometimes hard to keep positive but I do try! x
Guest Imnotadoctor
Posted
Hi, thanks for your reply. SIBO made for interesting reading! I too was told many times that I had IBS over the last 30+ years. Its good to know that finally other possibilities are being considered and looked into. I have done numerous exclusion diets (again not for weight...although I have always been somewhat heavier than I should be lol!!) and I have done the Low Fodmap Diet a couple of times. Although it helps a little with the BAM, only medication seems to be the answer coupled with a very low fat diet permanently (I do pay the price if I deviate....which is often as i do love my food!!).
Alas one of the side effects of the medication is constipation (I have been having to use a colon care kit to aid motility for BMs especially with recto/enterocele etc) so i have temporarily stopped BAM meds so as not to damage my recent repairs. I also have not risked my colon care kit to protect surgery but of course all the gut/bowel BAM symptoms are back in full for now. Once I get cleared by the surgeon to restart meds etc I hope to get back to at least some sort of normality (whatever that is!!!....watch this space !).
Re re recent surgery(info for anyone interested)...I can now thankfully have BMs without pushing/aiding, as it does seem that most parts are where they should be and i cant feel or see the Rectocele, however I always use a low step-stool which has been invaluable for correct positioning (pre & post surgery). My bladder/incontinence is still there but i am hoping that this will improve over time with healing. Finger crossed.
Also for anyone interested, the robotic surgery has definately been less painful throughout than my previous surgeries, but I am still sticking rigidly to taking care re lifting or any other things that put strain on the repairs. Sorry this is yet another long post but I wanted to share some of the good things as well as the not so...!
welshgirl67 Guest
Posted
Crikey you have been through it hun.
Just one bit of advuse9. After any repair lifting moderate item can but pressure on any newly healed tissues.
What people don't reslise after these repairs we are left with more weakness than before unless you do our pelvic floor eexercises everyday for life.
I dont have any advise6 on mesh as my consultant refuses to touch the stuff for obvious reasons but I wish you a speedy recovery
Guest welshgirl67
Posted
Hi Welshgirl67, and thanks for your reply.
I have read many of yours and Imnotadoctors posts on here as well as many other people's invaluable posts and advice. its been so reassuring before, during and after procedures to know we are not alone. I cant believe i didn't find this forum more quickly.
Yes i do see now that strain and lifting must be limited for life to avoid premature recurrence. I cant help wishing that many surgeons would clarify this more.
I have done pelvic floor exercises continually since before i had my kids( on the advice of a lady physio in my 20s)...except directly after Ops until i was comfortable enough to resume them. I was advised years ago that i lack Collagen which reduces elasticity of tissues/muscle etc which means things dont 'ping back' so well ?! Im not sure how much that plays a part in prolapses but im sure getting older doesn't help much either.....oh to be young and fit again lol!
Take care all.
welshgirl67 Guest
Posted
Yes I agree collagen p,sys a massive part put lack of oestrogen menopause and active lifestyle and prola9ose can be high on our lists uunfortunately.
I had no issues at all till age 43 and I swear it was after I lifted turf at my home in Canada when doing our garden so yes it all plays its part.
Caesarian would of been my choice if I'd of know the issue now.
It could be worse at least it's no life threatening diseases hey ladies.
That makes me feel so much better when I loom at it that way instead of doom doom and more doom. Yiu end up down rabbit holes that way.
All the best to you