Risks and Results of Surgery

Submitted by starfire on March 21, 2007 - 12:05am
Body: 

I would like to say hello to everyone on this site.Although I have not posted previously, I have been reading your posts for over a year. It is wonderful knowing that I am not alone in my distress.I am praying for all the ladies on this site.I was diagnosed with a stage 2 rectocele over one year ago.Like so many of you, I was devastated.I have always tried to eat well, and exercise.This totally took me by surprise.I was also going through the deaths of my sister, mom, and others in my family at the same time.This was another blow I felt I could not handle.I did not even have time to pay attention to this. I was too busy taking care of critically ill family members.I finally was able to try to decide what to do about the rectocele.I had never heard of this before.I was totally in the dark.I assumed I would have surgery, and after a recovery period, I would be like new.I always like to research anything important before I do it.I have been researching this deeply for over a year.I also saw two of the top doctors in the field.After some research, I realized the surgery was not that simple, and could actually cause me worse problems than the ones I already had.I really wanted to be positive about the surgery.Everyone was encouraging me to have the surgery.One doctor quoted me a 70 percent success rate. The other doctor told me he had an 85 percent success rate.This all sounded great, until I found out the real statistics on the computer.One out of every three women will most likely have a repeat, or additional surgery.The rate of dyspareunia,(pain with intercourse),goes way up after surgery.The surgery usually only lasts 5-10 years, due to weakened tissues.Any repeat surgeries have a lower rate of success, and will usually need graft material added.There have not been very good results with graft materials up to this point.In addition to all of this, there are the usual risks of surgery such as bleeding, infection,incontinence problems,reactions to anesthetics,permanent pain,and possible worsening of bowel problems.After exhaustive research, I went back to my doctor, and presented him with all of the statistics I had gathered.I then asked him how he was figuring his 80 percent success rate, when all of the statistics I could gather were showing a success rate of 50 percent, at best.He pretty much admitted I was correct with that, although he did claim a much lower rate of repeat surgeries.He is considered one of the top specialists in this surgery, so it is possible he does have a somewhat higher success rate than most.I now realize that the nature of this surgery is very risky.Even the best surgeon cannot patch something together, unless there is some strong material to do a good repair with.Christine's book was extremely helpful to me in explaining what is really done in this surgery.After weighing all of the pros and cons of surgery,I decided not to have surgery at this time.I do feel both of the surgeons I saw are excellent surgeons.I just do not trust the surgery itself.As Christine said in her book, this is a surgery that dates from the 1800's.I feel the medical community has been woefully behind in trying to find new, and better methods of performing this surgery.I do think they are finally trying to make some inroads, and find better ways of doing these surgeries.I believe there probably will be a technique in the near future that will reduce some of the risks associated with this surgery.Until then, I am holding off, even though I probably need the surgery.This field simply has not done enough study, or research to offer women a pretty good chance of success with surgery.I am not trying to tell anyone what decision to make.I totally understand women wanting to feel like the problem is "fixed".I felt that way myself.I now realize surgery probably will not "fix" me.It will most likely lead to another surgery, or more problems.I am really thankful I did all of this research before I jumped in. I pray for blessings, healing, and strength to all here.

wenz

March 21, 2007 - 2:57am

Hi there - thanks for your very interesting post about the surgery. It confirms a lot of other opinions here and I'm sure it sounds pretty accurate. We are a lucky group of women to have realised these things before it is too late. I am so thankful to be here and I'm so glad I explored the alternatives to surgery as I came pretty close to having it too. Stands to reason that altering one's pelvic floor surgically is not without major effects on the functioning of one's pelvic organs - and as sex is one of our most precious things, I can't think of anything that is more important to be vigilant about. Anyway, that's my feeling.
Cheers, Wendy

howdidthishappen

March 21, 2007 - 4:20am

wow, that was an informative post...and one that just confirms what christine states herself. i feel quite lucky to have found this site even before i went to my gyn for the "official" diagnosis. when she said: maybe we'll talk surgery in 20 years, i instantly thought: no way. i have no interest in trading one set of very managable issues for some unknown problems.

and, as i've said here before, there's a site called hystersisters where i get all then anecdotal stories i need to further convince me that THIS is the way for me to go. i can't tell you how many of the women on that site says things like, "if i'd only known what the surgery really entailed..." and then describing the serious issues the surgery creates -- not to mention the need for further surgery. it makes me really angry for them that i do not think they were properly informed about the truth of it.

such huge gratitude for you work you've created, pioneer christine.

love to all.

susan

Therese

March 21, 2007 - 7:45am

I think you posted what we all have found after doing our own web search in a very concise manner. I know when I have spent hours literally looking for studies etc. they do not have any, except one I think someone posted here, that I had found also and that one wasn't a very long term one and I didn't trust the questions they asked. It seemed to really minimize the complications. They are only begining to actually study the results of surgeries yet recommending them like crazy. I don't want to be a lab rat myself. I used to go to a forum where women posted after their surgery--the complications were HORRIBLE and I would go just to remind myself how fortunate I was and that these women weren't "fixed". Much to my chagrin that forum, which was attached to a hospital that did the surgeries, is now GONE...wonder why?!
In my personal search trying to get here, a doctor actually e-mailed me offering me a "brand new vagina"...I must've posted a question on a site while looking for info and had forgotten...by then though I had found this site so it wasn't an offer that made me at all excited just wanted to delete that e-mail in the same way I would freak at a roach in my kitchen! Ha!
Thanks for the post--it is always good to be confirmed in a decision you make about something soooo important!

Christine

March 21, 2007 - 9:51am

Thanks, Starfire, for sharing your awakening with us. I just want to comment that gynecology has spent the past 150 years in experimental research of operative cures for prolapse and incontinence. Every conceivable rearrangement of the pelvis has been tried. When is enough enough? Continuing to believe in a future cure causes us to forfeit some measure of self-responsibility, which makes us more, not less, vulnerable.

What is currently critical is making sure as many women as possible understand the risks that accompany operations now in vogue. It is completely self-evident that having the bladder, vagina, rectum and perineum tethered to the bottom of the spine would result in horrific long-term effects on the body’s load-bearing joints, but like little children we are told, “Oh heavens no…no connection at all”. ENOUGH!!

UKmummy

March 21, 2007 - 12:59pm

I was flicking through a magazine this morning and came upon the yearly "physician choice" section for my area. I am always dubious about this and was especially horrified to see two physicians selected who specialize in "Laser Vaginal Rejuvination"!!!??? What on earth? I have absolutely no notion of what this could be but one of the Drs is a plastic surgeon so I can only imagine. Scarey stuff, truly!

granolamom

March 21, 2007 - 2:40pm

I've seen those ads too. been tempted to call just to hear what they're offering exactly.

I was in the company of some very wealthy women in their 40's and 50's a while back, they were all chatting about their plastic surgeons. most have undergone boob jobs, some botox, eye lifts etc and one woman was all excited that she had an appt for a 'vagina tightening'. it was to be a birthday gift for her dh @@

this was before I knew anything about prolapse but even then I thought it bizarre.

granolamom

March 22, 2007 - 7:40am

just wanted to let you know that as per Christine's guidelines, I have edited the original post, deleting the names of the doctors. for now, that kind of information is probably best shared privately.

thanks for understanding : )

Therese

March 22, 2007 - 8:48am

I was reading something about a Eutace Mullins and he brought up something about James Sims (well, several things...Women's Hospital turned into Memorial turned in Sloan Kettering) and I thought that sounded familiar and that is the guy in the book that 'pioneered' some scary surguries...do you know anything about Eustace Mullins?
I am just curious.

Christine

March 22, 2007 - 11:56am

No...is he someone interesting?

Therese

March 22, 2007 - 12:49pm

Just ran across him concerning medical things and he had some comments on James Marion Sims --very harsh and I remembered what you wrote in the book about Sims and it rang a bell. I have read some other things about Sims--you were pretty calm in your book Christine compared to what I have read--was that just for politeness? The guy seems beyond cruel when I read more--there are some commentaries on African American sites etc. I have only read the 2nd edition of your book so am ignorant if you went into the history of him further in the 1st edition...
I don't mean to ask more than I should, but if Gyn practice is rooted in him--they call him the "father of Gyn"--I don't know. I feel very ignorant of the history of medical treatment for women especially. I feel disgusted if this guy is revered AT ALL. Is he considered some great guy in current medical schools of thought?

elleninala

March 22, 2007 - 1:42pm

I found this site just last night. I've been able to feel a prolapse for several weeks and have been pretty distressed about it. The emphasis here on overall health, and on keeping the integrity of our bodies, is very helpful to me. I am so glad I found you, and grateful to all of you for sharing these matters which are so very personal. I've ordered "the bundle" and look forward to learning. Many thanks to all of you. I'll be back.

UKmummy

March 22, 2007 - 3:40pm

Interestingly, and appropriately enough, NPR's "Talk of The Nation, Science Friday", has a show tomorrow about medical experimentation throughout history on African American people.

It will run at 1200 noon in my area. I will be listening, though I almost dread what I will hear! I am interested to see whether the horrific gyn surgeries performed by Sims are included.

Therese

March 27, 2007 - 8:13am

Just curious about how it was?
I really don't know what the big deal about devising a speculum is...they gush over that Sims doing that...seems to me it common sense... Christine...this might be a very dumb question, but is there anything they do normally in a pelvic exam that could be not so good for us with prolapse? Is the way the exam is done normally pose any kind of problem for us at all?

Spring here in MN yesterday!! Glorious day with a very long and posture fun walk with the BABY!! Today I will be doing that too!!

Christine

March 27, 2007 - 9:11am

I don’t think so, generally, Therese. However, while I was writing that response to PArunner the experience of Mommy2three did come to mind…

She was going through an acute post-partum prolapsing of all three “compartments” and was having a miserable time. Like so many others, she really trusted in the system and spent months going to doctors and PTs. The low point came for her when she went to a urogynecologist who gave her a very rough vaginal exam. She was convinced he caused the final blow to her organ descent and seemed totally bewildered and angry that he might’ve even been trying to make it worse. I think we were all pretty shocked, but somehow not surprised.

With my first labor (the second there was no time) I was given umpteen exams by the nurses, which were SO HORRIBLY UNCOMFORTABLE! Through my own life experience and doing this work I guess I’ve become more aware of how sacred that area is. It’s not like we have to go back to being prudes, but to develop a bit more protectiveness of our bodies. We’ve totally given them up to the practice of medicine, which has not always been in our best interests.

UKmummy

March 27, 2007 - 9:49am

Hi Therese,

Only part of it of course! What with picking up my daughter from pre school, we were in and out of the car. Didn't hear enough to hear whether Sims was included.

Alot of the show focused on Tuskegee, and also whether experimentation in the past has caused inequality in health care for African American people today. The show was based on a book by Harriet Washington called "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present" My feeling is that the book will certainly make mention of Sims.

I plan to go to NPR.org and listen online. Anyone can go to the archives of past programs and do this.

Therese

March 27, 2007 - 10:55am

Christine,
Ok thanks. I guess intuitively I thought that from now one I will let the dr know--my fam phys does know I have prolapse--but they forget things--just like I do!...so I had already made a mental note to remind him when I go that I am prolapsed and to be very careful.
In my case the OB-GYN I had --I am convinced his care with my seven yr old during delivery started me on the prolapse way--was VERY rough and almost callous in his treatment of me. I switched to my current Dr. and was asked why and I told him that the obgyn Dr. so and so was very rough and I would never go to him again and felt he didn't even know when I was dialated--when I gave my first push with my seven yr old (they told me when --so wrong!! I didn't have the urge yet!) I screamed--I felt like something had torn--and my current Dr said he had heard that before...I found that sooo unusual because Dr's rarely confirm another Drs poor behavior--even if they are REALLY BAD..!
I think we should all keep in my mind not assume anything about the Drs etc that we see and to speak up and let them know we are prolapsed and to be very careful. I will hurt the Dr back this time HA :))

I did find a link UKmummy about Sims...http://www.nathanielturner.com/jmarionsims.htm