To our post-surgery members

Submitted by Surviving60 on July 6, 2014 - 9:48am
Body: 

There have been many new posts lately from women with complicated surgical histories. We love to hear from you, and we know that most of you can benefit greatly from the WW work. But at the same time, your issues are often beyond the scope of this forum, and even a moderator such as myself is far outside of my comfort zone in telling you what might be good, and what might not be totally safe. We do not in any way provide medical advice here. Booking a consult with Christine will always be your best bet.

These posts have given rise to many thoughts and concerns. I am wondering WHEN we will start to see these surgeries tapering off, as more and more women research their options before the fact, instead of waiting until afterwards to look for a fix.

Whole Woman has been around for over a decade. I realize that isn't a long time for those of us who were well into adulthood before the internet was invented! But long enough to have saved many women from surgery; many more could have been saved.

The HERS Foundation has been around for 32 years. A decade ago they organized a year-long protest that visited every state in the US for a week. In 2008, their landmark book, The H Word, was published. They too have a comprehensive website.

HysterSisters is the biggest surprise of all. Founded 16 years ago, their website is jam-packed with advertising from the urogyn industry. It is a place where women who are considering hysterectomy would be expected to go and do some research. Their doctors might even suggest it. Surprisingly, right alongside all their happy-hysterectomy articles are years and years worth of horror-stories posted by women who are suffering terrible effects of hyst and failed prolapse repairs. In response to their posts, there are only more posts, from women with the exact same issues.

Until women stop letting the medical establishment scare them, stop letting well-meaning but ill-informed family and friends sway them, and start to listen to their own bodies and do their own research, the surgical epidemic will continue. Surgeries will go on happening at the same tragic rate until women start saying "no". Those who have had surgery have a duty to the next generation to help us get the message out. - Surviving

Forum:

Holley

July 12, 2014 - 1:15pm

When I have time, I'll be sure to post my story there as well as stories, of a few other women I know who almost died after failed mesh reconstruction. Being an advocate for women's rights, a retired midwife, a long time peace activist, and newly converted WW, I'm sure I'll find my way there.

Many thanks!

Holley

July 29, 2014 - 9:09am

Thank you for what you wrote above Surviving 60.

I'm sure I'm at least one of the women you are addressing here. I just want to say, that even though I have I am "complicated" and had bladder ("Burch" Procedure- 1990 before they started using a sling) 2 urethra surgeries, total hysterectomy 12 years ago, two spinal surgeries and now a diagnosis of a PLUS FOUR enterocele and rectocele, this work is for me and I'm not having more surgery. I am only two months into this and it is really helping me. Reading these forums gives me great strength.

The other day I saw my Urologist who insisted I come to see her when she got the note that I had an enterocele. I did not want to go see her, as I know she does pelvic reconstruction. But I went, because I wanted to discuss how to avoid frequent UTIs and also the necessity of my pessary. When she examined me she said that my 'celes had progressed to stage 4 - thats right! (I think this grading thing is subjective and also probably depends on many factors.) Looking at my long list of health issues she agreed that I would not be a good candidate for surgery even the robotic via laporoscopy. So instead of offering me surgery, she agreed that I was managing the prolapse quite well, gave me great tips to keep from getting UTIs and advised me to use the pessary or not depending on how I feel. Then I told her about this website and the WW Posture and she was impressed.

OK, I've seen my GP, my GI MD, my gyn two surgeons and now urologist.

My GYN and Urologist both agree that this work is the best thing I can do. That the loop of small intestine and the rectocele are not life threatening and that if I could manage symptoms naturally to go for it.

I just want to say, I really did my homework on this and am sure now surgery is not for me. That's two MDs in Florida now that not only agree that I should not do the surgery, but now know about the work of Christine Kent and the Whole Woman website, DVDs and the WW posture.

I will set up a phone conference with Christine soon.

Many thanks to you Surviving 60 for all your wise words on these discussions. I am surviving my 60s too!

Aging gracefully

July 29, 2014 - 11:32am

Lovely post, Holley. And, this will be great encouragement for future women that have had surgeries can adopt WW to their lifestyles as well, just because of the fact that you actually went through it too. I love reading your posts!

Surviving60

July 30, 2014 - 5:52pm

Holley, thanks so much for this post. I'm always in awe of the women who have gone through these operations, all of which were doubtless the "gold standard" in their day......and come here to tell their stories and to get and give encouragement to others similarly trying to deal. You are completely correct about the grading thing; the organs are always moving, especially for those of us who have really thrown ourselves into this work and found out just how mobile and subject to various forces they can be. I'm pleasantly surprised to hear that you are getting encouragement from your docs to pursue the WW work. I guess even the knife-happy among them can see when there's nothing more to be done in that department! Anyway thanks for joining the forum; it's clear from all your posts that you have a vast store of knowledge and experience to share with us all. - Surviving

disfiguredwoman

July 31, 2014 - 3:26am

Just saw my gyne yesterday and was abit surprised to hear even though I am high risk, She wants to perform Surgery on me. She did mention to me that NO surgery is perfect but prob better then suffering the way I have been the past 14 yrs. Even though I am having surgery ( august 12th) She did encourage me to continue with the posture therapy as it will help my healing. reading here about other experiences I have to say I am quite nervous right now.. August 12th is not far off! I will be happy to keep you al posted as I recover ( downstairs in the dining room LOL). I suppose I will never be able to climb the stairs to my bedroom again.. sigh. Currently I posture as much as I can to help alleviate my pain, otherwise I am on three different narcotics. NO general anesthetic for me though... I get a spinal.

peacelilly

July 31, 2014 - 6:49am

thoughts are with you D.W. wishing you courage and well being..

Surviving60

July 31, 2014 - 7:09am

You have a lot of medical history that most of our members can barely imagine. You came to this site looking for information and possibly encouragement in your quest to have your vagina stitched shut. What you found here was an urging towards caution and a consult with Christine before you embarked upon an irreversible and complicated procedure. I gather that you have decided this is the right path for you, and I do hope you will keep us posted as you go along. - Surviving

disfiguredwoman

August 26, 2014 - 2:33am

well the surgery wasn't as big as I thought it was gonna be ( No I didn't get stiched "shut" after further thinking) But I got good and tightened.. with a cuation my prolapse MAY return in a few yrs... Bummer! Very sore after the surgery ( not sure of the name but things were pullled up and secured to bones). I also had some vaginal tissue removed as well and "tightened up" abit. I still have my uterus but only becuz towards the time for surgery I decided I didn't want more pain then needed. fear does that to you. becuase I still have a chance and would like to prevent another prolapse I am already working on posture as I walk ( after watching my young nieces), going to the bathroom ( YOW! still stings) and laying down. I don't care to go through it again. Right now I sit on an inflatable doughnut pillow becuase everything seems to irritate my dissolving stiches. I have had these since august 12th and am eager for them to fall out. Just saw my gyne today and she said all looked well. I see her again sept 15th. My back no longer hurts.. I am walking better and not straining so much for BMs.. although since I had an anteriror and posterior repair it is irritable back there. Just thought I'd update you all :)

Surviving60

August 26, 2014 - 9:05am

Good to hear from you DW. What did you end up having, anterior and posterior colporrhaphy? Maybe that and more, if you had things anchored to your bones. It would be good for you to know the names of the things they did to you, and whether or not mesh was used. It's true these procedures do have a high failure/repeat rate, and the repeats never work even as well as the first. So please do practice the posture principles as much as you can. It will be different because the dynamics have been greatly altered and you need to use caution when there are permanent attachments involved! These are surgeries that we hope women will avoid. Your issues were extreme, however, and we understand. I hope this gives you a better quality of life at least for the next few years. I admit that I was not aware (maybe it was discussed and I forgot) that you were even considering a hysterectomy. There are about a thousand reasons to keep your uterus, and reading this post makes me think that you might want to study up and refresh yourself on what some of these are, in case in the future you have a doc trying to talk you into it. Review the hysterectomy page on this website, and go to the HERS Foundation site as well. Take care and keep us posted through your recovery period. - Surviving