new member;multiple advanced prolapse

Hi,

welcome to this site. Read, read, read it and then read it somemore until you can make the decision which you feel you can live with. It is your body and the decision is yours alone--not ours and not the doctors. This is all scary. Thanks to this site I was able to say no to surgery and I am comfortable with my decision as I learn to live with my body as it is. However, I am not you so therefore you need to choose your own path. From personal experience, this site has been a lifesaver for me. Like most who come here, I was scared to death because I had no idea what my body was doing to me. You are so welcome here no matter what your decision is.

Hi and welcome,

It’s very true that we welcome everyone and I especially hope to hear from our post-op gals about their progress.

Hope it’s okay to give you a reality check about the surgery, though, as you have no idea what has been offered to you and no way of calibrating the effects of these operations.

First of all, the uterus forms the hub of a wheel of connective tissue that not only connects it to the bony pelvis, but also holds the bowel and bladder in their proper positions – even when prolapsed. When the uterus is gone, the bladder falls back and loops of bowel fall in to occupy the space left by the uterus. Sometimes the uterus is amputated from the cervix in an attempt to maintain some of the supportive value of those connections, but sub-total hysterectomy was generally abandoned fifty years ago because it never proved to be of much benefit over total uterine removal.

The BSO stands for bilateralsalpingoopherectomy. Another medical term for this procedure is castration. This is when they remove your ovaries and tubes at the time of hysterectomy. Cystocele and rectocele repair involve dissecting your front and back vaginal walls, trimming them, and then suturing them back more tightly in an attempt to push the bladder and rectal bulges out of the vaginal space. This part of the operation almost universally results in bladder neck instability, which is then addressed with either the TVT or TOT. These procedures thread a strip of polypropylene mesh through your pelvis and out through your abdominal wall to anchor the top of your urethra toward the front of your body.

I don’t have time to list all the possible risks and complications of this “gold standard” of surgical treatment for prolapse, but suffice it to say that chronic pain, bowel and bladder dysfunction, sexual loss, and premature aging are just a few. Even more tragically, the surgery does not cure prolapse. The urogynecologic literature states that women who have been operated on for prolapse have a 500% chance of recurrence.

You are in the company here of several postpartum moms who have improved without surgery. The required changes in order to affect your symptoms are posture, diet, exercise, and other lifestyle adjustments. The book is out of print for the time being, but you can find all you need to get started here on the site. There are explanations of the posture in the FAQ section, and I just posted a description of the firebreathing in the Bodywork forum.

I cannot tell you how much or little you will improve with this work, but the evidence we’ve collected so far suggests it will be enough to live very well with your condition. Once you’ve had such radical surgery, there is nothing left of natural anatomy to work with. However, if you have all your organs and have not had vaginal dissection, there is great chance for improvement, because the “net” in which your organs are suspended works and moves as a unit. We are pulling up the entire net through posture and breathing.

Wishing you well,

Christine

Your decision to postpone surgery must have been a difficult one for you. Please know that you will find much support and good information here. I hope that you will continue to have confidence in your ability to manage your prolapse (even with the challenge of raising 3 young children!), especially now that you have found Whole Woman. By the way, although the book is out of print, you can still purchase it new or used through Amazon.com or used from Half.com The title is: "Saving the Whole Woman" by Christine Ann Kent. ISBN: 0970144008 A new edition is in the works...

My best to you,
Jean

You are very wise to say "The more research I do, the more frightened I am". I can understand why. There are more and more reports coming out showing complications that can occur with sling implants for the vagina and bladder--as well as other uterine/vaginal/bladder/rectal procedures. As a result of the vaginal sling, I experienced tissue breakdown, infection, bleeding, scar tissue, ruined sex life, and permanent nerve damage from the sling implant. I wish I could go back in time and retrieve the body I once had. Though it was not perfect, it was far better than what I have now. Now I am in a position to only warn women to do thorough research, be very careful and cautious, and ask doctors lots of tough and hard questions. Any ethical and honest doctor will be happy to answer them. Question carefully the doctors who promote all the so-called "benefits" of these slings. Ask them about the clinical studies that promote one particular sling over another. Ask them about the doctors and research universities who promote one particular sling over another, and ask if they are paid or sponsored by the pharmaceutical corporation of the product they are recommending. And ask the doctor if the pharmaceutical corporation can produce the LONG-TERM studies proving the safety and efficacy of these products. They won't be able to, because there are no long-term studies available yet. In addition, I found one research study that found over 75% of all the hysterectomies they studied were performed without the benefit of diagnostic tests to prove whether they were medically necessary or not. So be careful. Insist on the full range of diagnostic tests--an MRI and urodynamics--that show the position of your uterus and the vagina, and the size of cystocele and rectocele. If your doctor tells you that you do not need these diagnostic tests because he or she can determine the "prolapse" by a physical exam alone, I would be very leery of allowing any surgery to be done without the proof of diagnostic tests. You have to be willing to ask you doctor some tough questions. It's your body, and you are the one who will have to live with the results of the surgery. Ask your doctor some tough questions, such as: "Can you verify in writing that the vaginal and/or bladder sling, cystocele repair and rectocele repair will not injure or damage delicate nerves and nerve pathways?. Ask your doctor and nerve entrapment.
Ask your doctor to verify in writing that the hysterectomy, sling implant and other repairs will not affect, hurt, harm or ruin your sex life. Ask your doctor to verify in writing that the surgical procedures that cut your uterus out and subsequently implant a sling will not harm, injure or damage your female organs, blood vessels, tissues and nerves. ASK YOUR DOCTOR TO SHOW YOU MEDICAL DRAWINGS TO SHOW YOU THE THE MULTIPLE NERVES AND DELICATE NERVE PATHWAYS AND BLOOD VESSELS THAT RUN THROUGH THE VAGINA, BLADDER, RECTUM, UTERUS AND FEMALE PELVIS, and ask him how he is going to avoid all those delicate nerves and blood vessels. Ask the doctor if the pharmaceutical manufacturer can guarantee in writing that the synthetic sling and mesh does not injure, damage and/or entrap nerves. Ask the doctor if the pharmaceutical manufacturer has studies to PROVE the LONG-TERM safety and efficacy of the product. Ask the doctor if the pharmaceutical corporation has disclosed all risks and/or complications associated with the sling. Ask the doctor if he knows the difference between all the different slings on the market. Ask the doctor if he knows all the different methods of implantation out there. Ask the doctor if he's viewed all the reports explaining the differences in the types of mesh weave (e.g., is it monofilament? multifilament?), weight (e.g., is it light weight,
heavy weight?), and what are the pros and cons of one method of implantation over the other (e.g., suprapubic? transvaginal?). Tell him that each pharmaceutical company has its own version and brand of mesh sling, and their own version of it should be implanted, so how does the doctor know which one is the best--and by what standards and means does he judge the one he picks to be the best? These are tough and difficult questions. But your doctor needs to give you answers. If he doesn't have the answers, then tell him you want to speak the pharmaceutical rep who represents the product. Ask the rep to produce verifiable proof the slings do not cause harm, vascular or nerve damage, scar tissue buildup, sexual difficulties, etc. Go to the website "http://findlaw.doereport.com" and check out the e "Female Reproductive System with Nerves, Anterior/Laterial View-Medical Ilustration" drawings and you will see some of the major and minor nerves that can be impacted by surgery. Do a study of diagrams and drawings of the female pelvis, vagina, uterus and anatomy and don't be afraid to ask your doctor a lot of tough questions. It is YOUR body and you have every right to be fully informed. Good luck! P.S. Do a Google search and read the article by Dr. Kaven Baessler on "Severe Mesh Complications Following Intravaginal Slingplasty". Also, google the Johns Hopkins University study by Dr. Victoria Handa on "An Anatomic Study of the Uterosacral Ligament and its Relationship to the Pudendal nerve and Sacral Nerve Roots" that describes uterosacral ligament suspensions --which sling procedures and hysterectomies involve--by showing the relationship between vaginal/uterine surgery and ligaments and how these ligaments are attached to nerves that can be injured and damaged during surgery. Good luck!

I'll throw in a couple from my new book as well:

Although tens of thousands of tension free slings are being implanted in women every year, systematic reviews or follow-ups for complications are rare. “Apparently, there are no accepted definitions of what ‘complication’ means…more important seems to be the lack of follow-up, thus loss of information on mid- and long-term complications for the surgeon in many national health care systems. This is of importance concerning UTI, prolapse and invasion of slings into the lower urinary tract that apparently increase with time.”

Recent data has shed new light on what pelvic surgeons have long suspected, that plication of these ligaments can cause injury to the S1-S4 trunks of the sacral nerve plexus: “Our findings suggest that suture injury is anatomically plausible. We do not know how often this complication occurs but we suspect that it may be underdiagnosesd. Suture injury to the sacral plexes trunks S1-S4 can result in damage to nerve fibers in (1) the nerve to the quadratus femoris and the gemellus inferior; (2) the nerve to the obturator internus and gemellus superior; (3) the nerve to the piriformis; (4) the nerves to the superior and inferior gluteus: (5) the posterior femoral cutaneous nerve; (6) the pudendal nerve; and (7) the sciatic truck and its branches to the thigh, leg, and foot. Clinically, this would present as sensory loss involving the S1-S4 cutaneous dermatomes of the perineum and the lower extremity. Possible areas of motor weakness would occur with hip extension and abduction, knee flexion, and plantar flexion.”

Sources:

Petri et al Reasons for and treatment of surgical complications with alloplastic slings. International Urogynecology Journal 17: 3-13 2005

Sohail A et al Relationship of the uterosacral ligament to the sacral plexus and to the pudendal nerve International Journal of Urogynecology May 30 2006 (e-published ahead of print)

Hi dirtydancing1974
I thought I recognised your name. Glad you are still calling in. Well, the two most recent posts will have given you something to think about once again. I don't envy your decision.

I really agree with them though. You have a lot of difficult questions to ask, to which you won't get answers, or if you do they may not be informed answers. And you have a lot of reading ahead of you so that you can actually talk the same language that the doctor will be using. It can be quite bewildering.

I can only reiterate that it is your body, and that you will be living with the results of your decision for the rest of your life, be they good or bad.

I am just wondering what has turned you around to reconsider surgery again? Have your prolapses got worse, in spite of all you have done? You seemed so certain in your earlier post that sursgery is not the answer for you.

Admittedly, finding this site is such a thrill when you are down in the dumps with prolapses. The reality of the lifestyle changes, and the fact that all the postural changes in the world won't cure prolapses is a bit harder to swallow. All it will do is enable your body to 'swallow up' your prolapses again, so that you cannot feel them dropping down all the time. These techniques will also stop further damage, and that is enough for many women, for whom the prospect of serious surgery with uncertain results in the short or medium term, and a return for more surgery almost a certainty in the longer term, is enough to turn them off surgery altogether.

The other thing to consider is that even with your baby now ten months old, your body could quite easily be still getting over the pregnancy and birth. I can remember feeling like my pelvic organs were flopping around inside me for a lot longer than that before it all kind of settled down. But you are a women who has had several babies, so I'm not telling you anything there!

Can we be of any help to you by running through what is happening with your prolapses, and what sort of progress you have made since August? You can always put the surgery off and give yourself plenty of time to think about it some more before committing yourself. Don't hurry it. It is a very important decision.

Another thing to consider is that there are some, but not all, women in these Forums who have had opinions from doctors that do not say surgery is the only option. However, I would think that most of us have been told that surgery is the only option, so I am not surprised that you have had three similar opinions. My gynaecologist told me twelve months ago that surgery was the only option for me, after my GP told me that I had better have surgery soon (ie within 6 months) or it I would have to have the surgery anyway but it would have to be much more complicated.

Yes, I still have prolapses, but I don't know I have them unless I become constipated, get slack about my posture, or get close to a period (at the age of 53 that one has a use by date!) So they are not always right. But the doctors are selling products, so you also have to consider that.

I really hope that you can have a similar outcome to mine with a few more months of perserverance and fine-tuning. You can always have surgery, whenever you decided to, but you can't go back.

Actually, I confess that after our last baby was about twelve months old and further pregnancies were no longer on the agenda, I do remember thinking about kind of spring cleaning the old body, and getting back to being a woman again, instead of a completely Mum-type creature. I can see where thoughts of surgery could take root.

Take your time, and I hope we see further posts from you, telling us about your progress. I am trying not to be negative about surgery, but I can't help it. It's just so irreversible, and uncertain in the results, except that you will probably have to go back for more a few years later.

Cheers

Louise

Welcome to the band of women who choose a different path.

When I came here I had a grade2 uterine prolapse - I was so scared and was a right mess. Through this website I have learned so much I stupidly let my Dr ram the wrong size pessary in to me (She is NOT a Gynae tho she thinks she is God) After that I had a cystocele and rectocele also! Now - I have no problems with any of them - They are all at a grade1 now through posture work.

I am not saying the posture will work for you in a day - It took about a month before i felt different 'down there' and now - A year on - I feel 90% normal again - The only time I feel the prolapse now is if I have been stood on my feet for many hours - And even then it just feelt like someone pressing - No pain no aches - Just life and living it :-)

Welcome aboard the ship of Christine - You will find out much much info here - Have a cuppa tea (Or coffee lol) And digest all the info - You will find it enlightening :)

Sue

hi LaraRhonda

Thank you for you're amazing piece of research, i just with it hadn't come about for the reason of you having suffered from this surgery..

I'm actually on line now in response to reading an article in today's toronto star health section (Nov 24th), uncritically singing the praises of the sling procedure concluding that women should line up round the block for it it so improves quality of life.....

If it's ok can i paraphrase part's of you're letter in response? I won't name you, just refer to you as "a whole woman contributer" if you like.

But if you got this in time it would be wonderfull if you could send them an e-mail - just a suggestion - i know it's thanksgiving over in the states so if you're there you're probably up to you're eyes busy!

Anway's i'll let everyone know in a seperate post..

Best Wishes

Anne-Patrice (who's inexplicably become Ann-Kane?)

p.s Article is at "thestar.com" and it's called "ah to jump again" all about the wonderfull benifit's of the TVT secur procedure for incontinance"