Too Late for Me?

I think the first thing I can say is that you have come to a good place. You won't get the brushoff here. I can see that you are beating up on yourself a bit, and blaming yourself for all the things that have happened. We have all done this at some point. It is part of the process of grieving for what we have lost. I guess I am hearing is that you don't dare to hope that it could get better. I can't promise you anything. Each of our bodies and the damage to them is different.

However ...

Dr Brushoff seems to be trying to hypnotise you back into his surgery, and I guess you would rather give him the brushoff! Even doctors admit that the best results come from the first surgical procedure. Subsequent procedures have a lesser success rate.

The only way you are going to be able to see if you can manage this body of yours is to give Wholewoman methods a fair trial. They will not make it worse. They may improve it. These techniques were really designed to reinforce natural pelvic support. Your pelvic support has been changed, but you never know what might help unless you try.

Here are some things you can do.

*Find out about Wholewoman posture from the FAQ's on the main website. This is the main factor in managing POP.
*Get your head around what the surgeon did during your repair op. I am not too familiar with the specifics of these procedures.
*Avoid constipation and straining on the toilet, so you don't cause any further damage.
*Only wear clothing that does not compress your belly, so your pelvic organs can move forwards, and over your pubic bone, so they are not hanging over your vagina.
*Use the Search box to trawl the Forums and find out what you can from what others have written.
*Purchase Saving the Whole Woman, edition 2, from the online shop. This book is the bible for managing POP yourself, and has very clear illustrations to help you to understand what is happening in your pelvic region.

We have all done things that we have later regretted, and turning back the clock would not necessarily yield a different result. What happened to you is not of your doing. Sure, if you had known about Wholewoman before you gave birth the first time you might have been able to avoid some of the damage. Please don't blame yourself. Just concentrate on finding out all you can, to deal with the body you now have.

Cheers

Louise

Hi Irina,

I'm sending ooodles of prayers and sympathy your way. You and I have the same story, except I was several years older when I had very similar surgery. That you are so young brings tears to my eyes, but you sound mature enough to understand that sh** happens in life and we all must work with what we have.

First understand that the Burch and similar surgeries that anchor the bladder neck to structures at the front of the body also pull the front vaginal wall forward. You have probably noticed that vaginal fluids now fall forward on your undergarments - a shocking bit of data that underscores the extent to which your anatomy has been changed. If things were "tucked up real good", as my surgeon told me the morning after, you will likely always have severe UP.

As I document in Saving the Whole Woman, the gynecologic industry has known for decades that this is the case. In women who have their uterus, the procedure results in immediate and profound uterine prolapse. Women without their uterus often experience severe rectocele/enterocele. It is an operation that should never be performed on young women and in fact is probably litigable at this point.

So now the question is, would you now be better off hysterectomized? I can only offer my opinion, which is largely subjective as we haven't had many post-ventrosuspension women on the boards who have chosen to keep their uterus.

I had the surgery when I was about 40. I must have had a long perimenopause and because of many factors (stress, diet, etc) I had an extremely difficult time. By my late forties the prolapse was still terrible and my menstrual difficulties were severe. I had one tremendous bleed-out that actually resulted in significant shrinkage of my uterus. Slowly I was developing this work and could see that my condition might be made livable for the longterm. Over time my uterus pulled well inside my vagina and for several years was about a 2.5 on the nebulous prolapse scale.

On occasion I could not feel it at all and after a few years of talking with far more seriously injured women who couldn't poop, couldn't pee, were in constant pain, etc, I realized that my situation was OK.

You may know that the uterus shrinks with menopause and it is true. In my forties it was BIG and now it is small and pulled inside even further - constantly a 2 on the scale and often times I can't feel it at all. This is huge progress from the initial third-fourth degree bulge I struggled with for years. I am 57 years old and have made more progress within the last year than in the first decade of my surgically-induced prolapse - due to an anti-inflammation diet.

Here is what you need to understand: No matter what, you will always have a bulge. If you go the "gold standard" route and have your uterus removed and your vagina secured to your spine, you will most likely develop a significant cystocele. Or perhaps chronic constipation and dependence on stool softeners, as post-hysterectomy women are so familiar with. So...do you want to work with your (slightly altered) natural anatomy, or do you want to try your luck with a total reconstruction. There really isn't much in
between.

I am extremely grateful and happy that I made the decision I did - never to speak to my surgeon again. I can run and jump and dance and poop and pee naturally. Many post-hysterectomy women you encounter cannot honestly say that - many can't even sit on the floor or run ten yards.

You do have to treat your low cervix with care, but infections are rare and I have come to understand that the uterus is a very tough and resilient organ! Beyond that, to be truly healthy you NEED what your ovaries produce for the rest of your life (largely androgens post-menopausally, which are turned into estrogens) and the ovaries are often incapacitated after being amputated from their body - the vascular uterus.

You don't have to make any decisions at the moment, but simply be with your body and see what it has to teach you.

Wishing you well,

Christine

Irina, you might be interested in this article that I found and responded to click here

This is how the medical system has been able to preserve their “standard of practice”, by publishing completely lame studies that in no way correlate to real women in real time. We WILL demand that the system change.

Oh...and to answer your question about book vs dvd, I think if you have to choose, you may enjoy the dvd more given that it’s highly visual and may inspire you since you and I share the same condition.

Hi Irina

I think you are motivated to 'do' at the moment, so the DVD will give you heaps of good guidance on that. Once you start to ask 'why it works, and how', it is time to buy the book, which fills in lots of detail on anatomy, and gives you the building blocks for using your body for the rest of your life, without damaging it further. My book is always on the top of my deep litter pile on my desk. I refer to it constantly.

Louise

Hi Allison

I really don't know what to say. I think you are not the only woman who has been led up the garden path by doctors who have done things to your body that you were obviously not clear about at the time. It is so hard to stick up for yourself when all about you are people who are encouraging you on to the chopping block, a lot of them more ignorant of the intentions of the surgeon than you were.

It will probably take some time for you to reconcile what you have learned and be able to move on. I too would feel stupid, but rest assured, we don't think you are stupid. S*** happens. You just gotta figure out how you can live the best you can, and I am sure that you can do that, even if it takes time. Even those of us who have not had surgical repairs have temporary setbacks, and think we are back to where we started.

The comments of your 'friend' sound like the voice of ignorance to me, but if she has never had to consider decisions like you made, it is probably more like the voice of naivety. I can hardly believe that about 20 years ago I half-jokingly suggested to a gynaecologist that a hysterectomy would probably be a pretty sure fire form of contraception for me, and solve two problems at once. He didn't laugh. I thought it was because he was a humourless individual. It was probably because he was aghast at the thought! It wasn't mentioned again. Twenty years down the track I break out in a cold sweat at the thought of what I could have let myself in for, had I been, at the time, in the hands of the gyn who later diagnosed quite significant prolapses and told me he would remove my uterus and hang my bladder off the stumps of the ligaments, and pop in a little TVT tape to hold up my urethra. No thanks, I said, don't call me. I'll call you. How lucky I was. We are all very vulnerable when we are having POP diagnosed. It is like swimming with sharks when you walk into that waiting room.

I've never been better. I wish you could have had the same experience.

We'll get you through it. Your body will never be the same, but it can be OK. Christine is a fine role model.

Louise

I'm so sorry for what you've been through.
I think though, that this is the bad part. yes, maybe things will descend a bit further, the after effects of the surgery will play out to some degree. but I also think that this is a new beginning for you, you will learn all you can about your body and how to protect it from here on in. progress may be slower than some of the other women here, it may look different and you may need to modify some exercises (or not). you can - and will - become an expert on your specific anatomy and I still cling to the belief that you can improve your situation somewhat. hopefully enough so that you can live well with what you've got (and thank your lucky stars you still have your uterus!).

This is quite a bit more serious, dear Allison. I have two long, permanent sutures pulling my urethra/vagina forward. You have a polypropylene sling under the mid-portion of your urethra plus a wall of mesh between your vagina and bladder. Your immune system is trying to wall it off with scar tissue, which is part of the operational design.

The type of mesh that was implanted will vary the outcome, but generally rates of vaginal mesh erosion are extreme. That’s why the FDA has issued warnings about it and when you search anything like “mesh erosion” a whole slew of paid ads by lawyers will come up. However, for reasons of power, money, and disregard for the right of women to informed consent, the stuff continues to be implanted at horrible rates.

This may be the cynic in me, but I wonder if mesh-injured women would’ve received the attention they have if one of the primary symptoms of mesh erosion hadn’t been excoriation of the penis. Doctors began taking women seriously when their husbands started to get scratched up during intercourse.

I wish I had answers for you, but for several reasons I cannot give you much direction.

I can tell you some of the possible risks. Constant erosion through the vaginal epithelium occurs frequently. This will present as off color/odor discharge and at first sign you should be seen immediately. The doctor will probably want to trim the exposed mesh and apply silver nitrate in hopes of stopping the inflammation. But your other option is total removal of both the sling and the vaginal mesh. Doctors do not like to remove it, however, because bladder injury is common. Mesh erosion into the urethra is also a reported risk from the sling. Penetrative sex will increase the risk of wall erosion and sling migration. These products should NEVER be used in young, sexually active women. They should not be used in women at all.

The UroToday report I pointed to earlier was suggesting that the older retropubic suspensions be brought back into vogue as a substitute for these newer mesh operations that are causing so much trouble.

I suppose there is some chance that you will build perfect scar tissue that will move like your natural tissues and last a lifetime, but we don’t have these statistics yet.

The entire situation is deplorable and only through litigation will it ultimately be resolved.

We are here for you, Allison. Please keep us updated.

Also...understand that the original female design is extremely strong and resilient. Keep your head, find people in your town to help you, and systematically unravel the problem.

Heartfully,

Christine

click here

Hi Allison

Just reading your most recent post makes me realise how we can only deal with the information we have, and not the information we don't have. I do hope that you are not beating up on yourself for making the decision to have surgery. In the absence of any other visible solutions I can see why you went ahead. It could have been me, or any of us. Hang in there.

Louise

Hi Allison,

I have a few general thoughts on the matter.

First of all - there are several popular and terrible books on postpartum prolapse. Please understand that the entire conceptual medical framework of core female anatomy, human birth, the pathophysiology of prolapse, and ALL standard medical treatments are based on misconception and gross malpractice.

Yes, you had all that medical advice but what you did not have was a person in a white coat with lots of plaques on the wall sitting you down, holding your hand, and gently but firmly telling you:

“Allison, prolapse is a condition so common to the female of our species that it should now be considered a normal outcome of vaginal birth. I know you are uncomfortable, but please trust that you have a basic design that has within it the capacity to reverse these symptoms. To what extent you will experience reversal I do not know, but I can tell you - and even put you in touch with many other women who will also tell you - that it’s highly likely you will be running with your children, having passionate sex with your husband, and feeling far more feminine and womanly than ever before in only a few months time. Here is what you need to know about the innate female pelvic organ support system and what you need to do to return to your original design....it will be creative, invigorating work that will give you a sense of the powerful human being that you are. Please call me with any questions or concerns. And don’t worry, you’ll be just fine”

But you did not have that person - who only exists at this point as a very small fraction of the medical establishment. Please understand that pelvic reconstructive surgeons are notorious for inflating their “success” rates. This is not an opinion but the objective findings of public health studies. And success can mean anything. As long as the primary symptom is abated, other short and long-term effects are rarely accounted for.

The other issue is women themselves. Women in our culture are psychologically and spiritually damaged to the point that they are numb. Many of the “success” rates your doctor may be referring to could very possibly mean women who can hardly walk, hardly pee, hardly poop, are on psychoactive drugs - but by golly they don’t have cystocele!

In my view, from this point on you will want to preserve your uterus at all costs. It sounds like you may have had porcine mesh? I don’t know how absorbable it truly is, but let’s assume it will at least integrate into the tissue enough not to cause inflammatory problems. Ironically, the whole issue about abandoning “natural” meshes revolved around the fact that they do dissolve and so are not “supportive” for the long run. Never mind the fact that the vaginal wall is not innately strong and supportive anyway.

From the Whole Woman perspective, what you need is your bladder to prolapse a bit so that it becomes more supportive of your uterus. By far, the most common presentation of prolapse is cystocele/rectocele with the cervix just above - precisely what you started with. Our long-time member, Sybille, coined the phrase “Nature’s Pessary” for this most common condition - the point being that the front and back walls act to hold the uterus up, which is a great blessing.

The sling is a worry. I do want to mention that the bladder is often nicked and punctured during hysterectomy and recovers unbelievably well. I have no way of knowing what sort of urinary/sexual issues you are facing whether you leave it in or have it taken out.

My guess is that you are not going to have much luck with pessaries. I always suggest that women at least go through the drill and try them. But they seem to work best in women with primary cystocele. The uterus is a very muscular organ that spits anything in the vaginal canal out in short order. Again, you may discover differently.

My book is very informational on the widespread and serious problem of surgical response to a problem that isn’t even gynecologic in nature. If we have to give prolapse a medical name, it is really more of an orthopedic problem. If you are interested in the subject, it is the only book of its kind.

I don’t know if I would recommend the dvd for you. I really worry about anything strenuous, for you have an approximately 7 cm strip of plastic embedded directly under your urethra. My hope for you and for all women reading this is that you will see and understand the bizarre and blind institution that is standing in for women’s “health”.

Christine

The sling is a ventrosuspension (ventro means front) as well. I don’t have statistics on UP after suburethral sling procedures. Anatomical considerations suggest there would be a correlation.

Allison, I can’t advise you on removal. I have no way of knowing whether you would be continent afterward. I do know the chances of you having a normal, pain-free sex life might be greatly compromised by the sling. That is repeatedly stated in the literature.

I do not wear a pessary. The alternative is this work. Some women benefit from pessaries and others do not. The point is to change the way you carry your internal organs. Many of us find pessaries are no longer needed, but a thin pessary is not an impediment to the postural work.

I think the book would empower you. You need to learn how prolapse is truly stabilized in the female body. I think you should feel hopeful, as you have much of the core anatomy needed. The best results are when the vagina is able to take its natural axis.

I just don’t know what to say about strenuous exercise and the sling. Here is a forum that might help you get a sense of the type and time frame of problems arising from prolene slings. You may be just swell for the rest of your life - but we only have about ten years of data and a lot of that data in young, sexually active women is not promising.

HI Christine,
Wondering if you can clarify something. You talk about the problems women with hysterectomies have with BM's. Now, I remember a post ages ago by someone who said "well, I'm already using stool softeners and have trouble, so why not risk surgery?" (maybe in relation to other surgery,c an't remember).

I am aware that other women might read this and think that as well...Now I know that whilst I've never tried anything chemical, I've had to alter my diet since my POP, and occasionally head for the prunes if I don't eat well (nature's softerner!). I also know that I got through weeks where everything works great, and weeks where i find i need to splint it seems like all the time--interestingly as my rectocele has again gotten better, BM's have gotten harder as my bulge is much higher up. But, I trust it's temporary as I have learned so well that these things are stages and transitions...and gentle splinting doesn't bother me and i figure I"m not hurting anything, just realigning (please correct me if i'm wrong!). Also it seems to help prevent those annoying fissures especially if i support the perineum if needed...

Okay, now I"m going to be freaking someone out who's thinking "and Kiki says she's doing great!". In my view, I am....if my body needs a little support, then so be it. Other than that, I have no complaints these days!!! And this feels very minor to me...

So, I think it's good to distinguish between what we with rectoceles face as to me it's quite small (and I think my experience is quite common based on what I hear here and from other women) and what women who have had either rectocele surgery or hysterectomies face, as I know there is a difference...

(And, if my assumptions about splinting splinting is wrong, please do correct!)

thanks
Kiki

Kiki...I think your perceptions and responses are right on. With all of us, our fascia is stretched out of shape and the most reasonable response is to gently support our natural anatomy through just this sort of “aid”. Many women report that splinting becomes necessary only once in a while. Oh...and yes, rectocele in the post-hysterectomy woman is radically different than what you are dealing with.

I just remembered that commend about "i'm already having problems..." and really think it's so imp't to know there is a difference...
funny with splinting as the need comes and goes, often illogically.,, but this site has given me the wisdom to understand the fluidity of my body, and the passing of stages on its road to healing. and again, i'm just in another that will soon make sense, for it is coupled with such huge improvements in absolutely every other way!!!! ;-)
thank you!

Hi Kiki

I do splint occasionally too, and it is often for a few days only, then it all changes again and I don't have to splint any more, probably for months. If I am realistic my splinting is usually associated with a period of stress, the sort that gives me a dry mouth, ie high adrenalin, eg just before lambing when we lost 6 ewes out of 24, pregnant with multiple lambs, from hypocalcaemia, just two weeks off lambing, over a period of two weeks. Talk about getting bound up!! Just very solid stool, and my intestines just refused to move it along, like they gave up the ghost! I just put up with it, and splinted when I felt the need to go. Sure enough, shortly after they stopped dying, and a few lambs were born, it all freed up again. I have come to know my bowels' habits. They go on strike, and the worst thing I can do is worry about it. They get over it, like teenagers who throw tanties!

What with Barbara the bowel, Violet the vagina, Eunice the uterus, Vicki the vulva, Sarah the sacroiliac joint, Laura the lumbar spine, and Patti the POP, it is like having a whole village of women living in my body. I never know from one day to another which will be my bestest friend for the day/week, and who will stab me in the back when I am least expecting it, and which combination will gang up on me, or defend me to the death. On the whole we are a pretty harmonious bunch, and developing more interpersonal skills every day. They are like my children, deep within me. We put up with each other, despite our warts, and wouldn't be without each other's company every day, for the world. We love each other dearly, and unconditionally, even if we sometimes think each other is a pain in the (Anna the) a*** !

But I am the Mum. I am the one who has to sometimes take them all in hand and work with each of them to get them back on track. Nobody else can do that.

So yes, having a family who are sometimes in a bad mood is quite normal for me too. I regard gentle splinting as being like a hitch up onto a horse, or holding onto a piece of furniture to get up, after kneeling for so long that my feet go to sleep. I don't have to do it very often, but it is a useful tool to have up the sleeve! I never know which trick I am going to have to pull out of the bag for which task each day. The more tools I have in my bag the easier my day is. Often I don't reach into my bag of tricks at all.

Allison, I still think you will read the book at some point, because the book, and these Forums is where the understanding comes from. The theory is in the book. The personal experiences are on the Forums. If you feel your body is a wreck, (which it proabably isn't) the book will be like a workshop manual for a car. It will help you to make sense of what still works, what you can use to aid your own wellbeing, and what bits you need to understand better, so you can figure out your own workarounds, and tweak techniques for your particular body.

Without the *understanding* you are still at the mercy of those who will offer you solutions. With the understanding, you can dialog with those people, and understand what they are on about, and ultimately make decisions about your body for yourself. This is where your empowerment grows from. You will eventually realise that with careful driving and some new skills you will be able to drive this vehicle of yours all the way to the grave, many, many years from now. There are no trade-ins.

Where else are you going to learn this stuff?

Cheers

Louise

here's what I think about the book for you...

you may need to read it slowly, in small doses, taking frequent breaks to assimilate what you are learning. like christine pointed out, you made a decision based on the information you were able to find at the time. unfortunately for you, you didn't have anyone telling you that 'sitting and waiting' was not your only non-surgical option.
so please stop taking any blame for that. there's a huge difference between 'blame' and 'responsibility', you take responsibility now, for learning about what was done, what you have to protect, what you have to work with.
your body has not been ruined, its been altered. it is still yours, it is still here to serve you, and it is still your responsibility to love, protect and care for.
learning to love an altered body which seems to have let you down in so many fundamental ways can be a tough thing to do (it was for me, and I didn't even have any surgery). I think this is part of the grieving process. so reading the book through the lens of 'crap, THIS is messed up TOO?' has the potential to be depressing, I think. but eventually you will find the 'ok, this is what it is, I can face this, I can work with this, I can learn to love this too' lens, and that is when the book will find its way to the top of the stack on your bedside table and you will find it empowering.

also, about the exercise dvd and the plastic under your urethra, I could be wrong here, but my guess is that the concern is because the exercises are not just strenuous. they are very focused, targeting at lifting the pelvic organs. I guess that would mean traction on the urethra, and I'm not sure what kind of detrimental effect that could have on that plastic strip.

my little one is calling me, I think he's got roseolla : (
but I'm thinking of you

Yes, I think Gmom’s perception is right-on. You have an intuitive sense of where your urethra is (just inside and directly behind your front vaginal wall), so any activity that applies pressure and pushing/pulling forces would have to be risky. I would expect even your surgeon would have to admit that bicycle riding could be a tremendous risk for dislodging the sling. Walking and even running should be okay. But common sense dictates that vigorous bending, twisting, and stretching motions must be more risky.

thank you Louise for making me smile. I love that!
Clarissa Clitoris is the one causing me the most trouble at the moment, but i hope with a naming and some more attention she'll realise she doesn't have to scream to be heard...
And on that note I'm offline for a few weeks. See you all upon my return!

Kiki