My situation is very similar to yours in regards to many ongoing issues ~
I too have had pelvic and abdominal issues for 25+ years...it is exhausting trying to get into the right hands to get to your best self...I unfortunately at 37 had a hysterectomy in 2004 with ovaries removed as well for endometriosis (supposed to cure it) I was in the small % that it did not cure it but it continued to wreak havoc...I went to doctors of all kinds, went through so many tests only for them to come back within normal range, so the doctors put me on meds and pretty much left me to figure things out...I was told it was my anxiety (well, I had anxiety because I was in PAIN and could not poop...)they treated me like it was in my head...(I even eventually began to think it might be in my head) I finally went to Mayo clinic in 2006 thinking they would be the answer they would figure it out...which was pretty much a waste of time and money... more test as well as repeat of many that had already been done...they did diagnose me with a small rectocele...but did not think it could be why I could not poop because I did not splint to remove the stool but did enemas, laxatives and colon hydrotherapy...well, so over time the laxatives quit working and the enemas and colon hydrotherapy was taking hours to get the waste out of my body...I learned to restrict food to next to nothing...which again would point them in thinking I had mental issues because I looked anorexic at times...I finally in 2011 found a dr. who was an endometriosis excision specialist went to him...he confirmed active endo disease, did Davinci to excise it out and diagnosed me with pelvic floor dysfunction gave me vaginal suppositories that were valium and baclofen which helped with the pain, but I was still struggling to evacuate my bowels...and if it's not coming out then it's a HUGE problem in how we feel...I felt horrible all the time...I was dumping lots of $$ down the drain for my weekly colonic and so I was in an endometriosis forum chatting about my issues with pt's saying my problems were caused by my doing the enemas as they kept the pf in spasms, but I had a dr. reach out to me and say maybe I had a rectocele...I told her I did and we then took our conversation private and then to email...she is a uro/gyn and has a partner who is a general surgeon...she is several states away and after seeing many dr.'s before knowing it was a uro/gyn I needed then seeing 4 other uro/gyn's besides her I chatted with her for over a year, but finally decided to fly out of state to her because she was willing to take care of everything she found (she is a uro/gyn as well as an endo specialist) so ended up that the dr. who did the excision did not make note of the state of my pf and this dr. made note of that fact in her records...I had rectal prolapse, rectal intussusception, entrocele, rectocele, cystocele and vaginal vault prolapse...also endometriosis and scar tissue...so this dr. spent 6.5 hours in my abdomen and removed about half my colon, did the sacrocolpopexy with mesh, as well as rectopexy (for rectal prolapse) with mesh...I went from not having a spontaneous bm to having 4-8 a day...those repairs are still holding strong and I am almost 2 years out and very active...unfortunately because of the pelvic floor dysfunction where the mesh ended and the anus would not open a new rectocele formed right in the area in between as well as perineal descent...the stool took the path of least resistance and this is why it is key to get the pfd under control too or your repairs will be at risk or you may end up with new prolapses..I had that repaired vaginally with sutures 4 months ago and am doing quite well other then the pfd...which we are still working on...the reason I share THIS LONG STORY with you is to let you know...you can get to a better place and I don't think a colostomy would be the answer...I am not sure where you live, but if you would like to private message me I will give you the name of the surgeon. I do think you can get better then where you are now...it took me forever, but I have absolutely no regrets and would have all the pop surgeries again tomorrow if they failed...so anyway...we can chat here or we can take it pm if you'd like...but don't give up and see if you can't get the vaginal valium suppositories and a pessary as well as get to a physical therapists to help the muscles to stop contracting because I imagine you have pfd as well...so this way you can start there while you keep seeking the right uro/gyn for your issues and prepare for surgery or not...just don't give up!
Thank you so very much for your kind response to my plea for help. I am sorry that you had to go through so much, but am glad that you are on the healing side of it nowDid you have to have a colostomy? I already go to a pelvic pt, who has referred me to a recto colon surgeon, who I'll probably use. He teams With an urogyns, who I haven't met yet. I just feel like I can't go through this any longer .I, too, had a hysterectomy & ovarian operations many years ago. And also went to the Mayo, etc., and got much the same results as you. It is sad that each of us has to do so much research when feeling so lousy. Pretty soon, we'll probably have to do our own surgery!
It is good that you have a Colorectal Surgeon that also teams with a Urogynecologist. It is possible you didnt have your vaginal cuff ( top of your vagina after hysterectomy ) suspended which will have added to a greater possibility of prolapsing later on which is what has happened for you.
Do you have a preferance with regards to colostomy or rectoplexy? I have an intussusception of my bowel as well as urethrocystocele, rectocele, uterine descent and anal prolapse and was told that if a rectoplexy doesnt work then a colostomy would be the result... so I wonder if you could consider a rectoplexy if that is what you want to do and the Dr says this is a good idea and ask if a colostomy would be an option at any later stage.
I wish you luck with this and let us know how you get on
Thank you for your response. It seems that we have some of the same issue(interssuception, rectecele, etc.). Some rectal surgeons told me that they would only do a colostomy. Don't know why. I would prefer the rectopexy, so I am going with the surgeon who will do that. He said that he would only do a colostomy if it fails. I have much anxiety about the whole thing, because I don't understand why some would do a colostomy on me.
Did you have your surgery yet? If so, which did you get?
Hope all is well with you.
I have not been offered the rectoplexy but have been offered either a urethrocystocele and rectocele op or just a rectocele op by a different hospital. Here in the UK operations are more conservatively done. I also have a bladder wall infection which I need to sort out before I consider a POP op due to catheters etc., This could take some time due to it having been left for so long. I am using a pessary which is helping to keep things in place for now but I have noticed further uterine decent etc for which I have not been offered an operation. UK Urogynes are conservative as I say...
It is not unusual to get different opinions from different Drs. I would ask the Drs what reasoning they have for their decisions like colostomy only. They will have a reason and I would simply ask the question to find out why. What are their success rates, over what time to they record their success rates in terms of follow ups or how long to their operations remain successful for... how many of the operations they do per week/month...
When discussing a rectoplexy for me the Dr told me also that mesh erosion/migration can be a risk but I dont feel it was a big risk but could this be a reason some of the Drs you have seen chose a colostomy? Ask the questions so you can be in a better position to make the best decision for you. I wish you good luck and please let us know how you get on.
I never thought about mesh erosion/migration, but that is an excellent question to ask. Thanks for giving me the idea, along with the other questions to ask.
Do hope that your bladder wall infection clears up quickly. That, along with everything else, must be very tough to handle. I wish you the best, and hope that things will get better for you. Keep in touch.
It is possible the surgeons are considering tissue strength for you but you will only know if you ask the question. My money is on whether the surgeons feel they will have success with a rectoplexy as a reason for not offering you this and I would be focussing my questions around their reasoning.
Thank you for your concern. I am feeling better but have a long way to go.
Look forward to hearing about how you are getting on
No I did not have to have a colostomy...there was risk of it if things went wrong and if they did then the mesh would have also had to be removed...so it was a BIG deal, but like you..I was willing to take the risk as I was to a point a colostomy bag sounded better then what I was dealing with and had been for years...but now they should be able to just reconnect the to ends of the colon rather then give you a colostomy...I would definitely want to know why they aren't going to at least try that...
If the surgeon covers the mesh well with your fascia in the abdominal cavity you should not have mesh erosion...obviously anything can happen, but I had all the above work done and so far so good no mesh erosion..You truly do need to find the best of the best...do you happen to know if you have redundant or torturous colon? This basically means too much colon...I had that as well as bowel endo and my surgeon said the best thing for me was to remove the diseased colon as well as use mesh to give me the best chance at being able to be active so I have quite alot of mesh in there...and I am doing over all well...no issues with being able to even do backbends in yoga with the mesh...it has not caused me any issues...not encouraging you to go with mesh...just want you to know that more are successful then not and it truly is 9 out of 10 times the way the surgeon places and then covers the mesh that makes it successful or not...
Definitely get all your questions answered and ask lots of them! It is your body and you want the best outcome possible! Let us know how things are coming along! It is sad when we have to figure it out because the doctors just don't have time or whatever other reason! There are some awesome, brilliant Dr.'s out there...we just have to look long and hard for them as well as tune into our gut instinct...if it doesn't feel right...there is a reason! ;)
You are so right about figuring things out ourselves. I think that I am getting a good colon surgeon.....will be meeting the urogyn in the coming week. I also have severe ibs or colitis and am concerned how the surgery will affect that issue. Don't know the answer to the redundant question.
Am sorry that you have had to go through so much, but it sounds like you are now doing well. Your experience, &those of others on this forum, are giving a lot of help and hope to others like me. Many thanks!
Hope that you continue to do better & better. Keep us informed about how you are doing.
What is "tissue strength "? There are so many things about this that I am not aware of yet. Thanks for informing me & trying to help me.
I am simply referring to whether the Drs feel your over all health including tissues are a factor with regards to what type of operation you have been offered whether that be a colostomy or a rectoplexy. I see you have colitis and severe IBS. Could this be a factor?.. It is worth asking your Consultant these and other questions you have. Be sure you are happy enough that you have had your questions answered by your Consultant/s so you feel happy about your decision. I do understand this is a big decision for you.
Let us know how you get on.