New to the website and forums, new to prolapse, who to contact?

Body: 

I am new to this way of communicating, so forgive me if I don't do it well yet. I have read some of what some of you have written -most interesting, helpful.

Does anyone have tips on how to use the format of a forum?

Can I contact Christine or anyone else directly?

I have been recently diagnosed with advanced prolapse of the uterus, cystocele and paravaginal defect (collapsed vagina). My doctors (I am HMO, referred to a consultant surgeon), the HMO one albeit with sympathy, my friends, my family all think I should have the surgery, and that I am just being emotional about the issue. I do not like the options presented to me, all of which involve removing the uterus, and none of which (except maybe the one which sews up my vagina) will restore me to the level of fitness in which I can continue my martial arts practice. Needless to say, the condition is painful, practically crippling, making it difficult at work in particular. I devised a crotch support for myself to ease this, and was told by my doctor not to wear it or the part of my bladder/vaginal wall which is protruding would be ulcerated by rubbing against it.

Although I do not identify myself by a number people call age, I will say that I am menopausal. I am also a single parent helping my daughter through college, employed as a private preschool teacher and a Sunday receptionist, and have VERY little savings and no money to retire. If I take enough time off from work to recover from surgery, I will lose my job as they will need to replace me immediately. That might be a blessing in disguise, as this job requires extensive standing and a fair amount of lifting (not lifting the kids). However, I face age discrimination in the process of finding a new job (I ran into it while looking before I got this one), and can look forward to probably not being able to earn a living wage if I quit for surgery. I work longer hours than I should - to do the job well requires it - and am in the car a lot. I use time which should be used for sleep and meditation to live a life outside of work, including being on the computer and trying to research this issue.

Has anyone else been through my experience?

Hopefully, a better way will emerge.

Hi Bertilsgirl

Welcome to the world of Wholewoman, where you will find many women with similar things as you. Just wait. They will reply. Congratulations on finding us.

You are coping with a lot aren't you, and your family just want you to just 'get fixed up' surgically because that is all they know about, and they love you very much and want 'what is best for you'.

No doubt your prolapses have been developing for some time, so that has added to the pressure.

The first thing for you to do is take a deep breath, and breathe out again. The experience of most of us is that with some specific improvements in posture, some attention to your diet, avoidance of clothing that compresses the abdomen, and awareness of what types of exercise you can do safely, and perhaps use of a suitable support garment, there is no reason why your prolapses should get any worse, perhaps ever! There is no cure for prolapse, but most women find that there is no need for surgery either, though it may take anything from a day to several weeks to see big improvements in your symptoms. Many women find that after a few weeks or months, their prolapses, which were previously regarded as quite serious, are barely noticable, and surgery has gone completely off the agenda. Give these techniques a try.

You can always decide later to have surgery, but if you have the surgery unnecessarily now, your body will have been changed irreversibly, and these non-surgical techniques will not be as effective. If you have surgery you will not be able to go back to the point you were before.

Go to www.wholewoman.com and have a look at the FAQ's, which will explain about what we suggest you do and why, and give you the basics of posture, diet, clothing etc. Also have a good look at the whole site. There is also The Wholewoman Center in Albuquerque, New Mexico, where Christine Kent works from, if you are lucky enough to be in that part of the world.

Christine's book, Saving the Wholewoman, edition 2 is due for release very, very soon. Even the first edition, which you may be able to purchase secondhand from Amazon.com , will be very helpful for you. It has a comprehensive summary of most of the surgery available, including complications and risk factors, which is very well-researched from mainstream scientific journals, ie it is good material.

Please don't sign up for surgery until you have read this. It will be time well-spent, although I can see that time is a precious commodity for you.

Just keep trying things with the Forum. Typing in keywords into the Search box at the left will bring up posts that have these words in them. Try variations of the words too, like gynaecologist vs gynecologist. There is a heap of women's wisdom here.

Cheers

Louise

I would agree with the above comment. Do not let your family talk you into anything - Sometimes what seems to be a 'quick fix' is not the fix all the Doctors try to tell us it is.

Read the site - Adopt the posture - If yu choose to chnage your road down the line then it is your choice and yours alone.

In the beginning - I noticed my prolapse every day. Every time I walked i could feel it. It annoyed and scared me no end...

Now - A year or so on - I rarely think about it and the only time I might ever feel it is if I have been standing for too long (As in ages) then it is just a slight 'different' feeling no pain or peeking out etc. Or at period time it may feel different - But it is nowhere near like it was a year ago.

I wuld read the FAQs on this site about the posture etc. make sure constipation is not a problem. And then - Over time (Took about a month for me to notice a REAL big difference) You should find whether this is something that works for you or not. The FAQs are really helpful.

If you find that the posture is not working as you need it to - This does not mean ya hafta jump into surgery. My motherhas a worse prolapse than I do and she opted for the pessary and she says it is such a fabulous help. No more dragging feeling for her. Posture would not really have worked for my mother as she is pretty disabled through Arthritis - So we sought another way and she says it has been a fantastic thing.

I was so very scared when I came here - So I know how you must feel.

Take time and read through the site - Take things one step at a time :)

Sue

hello bertilsgirl:

let me add a welcome to you. you are in the right place.

you know, when i was first diagnosed, my best friend really talked me off a ledge (metaphorically speaking) and told me about someone she had worked with a number of years earlier who was ALSO a martial arts expert with a universal prolapse and she had refused surgery and found other ways to live her life with it -- without giving up her martial arts practice. so i know it IS possible.

i can also tell you it's possible to see and get improvement with the basic principles here -- the posture, diet, life style shifts. just reading your post, i was thinking that perhaps you could look at the posture in the faq section and possibly get a small pillow to help your posture in the car as you mention you do a lot of driving. maybe some tweaks in your life like that could make substantial differences.

as louise, i believe, has already said, you could get the surgery at any time. there is no expiration date on that, on when you could opt for that. however, why not explore the possibility that are other ways to feel markedly improved without any invasive intervention, one that will keep your body just as intact as it is right now? you know, i've only been coming to this site for about two months, i think, and i am being as proactive with it as i can. i am working with the posture and diet and am, also, seeing a physical therapist for pelvic floor work. i went today and she did an internal examination and moved me from a grade 1.5 rectocele to a grade 1. obviously, i am crazy thrilled and i honestly think the majority was from the posture, diet changes, and christine's exercises. oh, and implementing the posture when i walk and, with the encouragement of everyone on this site, exercising even though the pt discouraged it. i always felt better after exercising -- just so long as i was conscious of the posture.

okay, long winded post here. my point here is why don't you give this a try for a few months, see how you feel. i know how hard it is when there's pressure around you from people who you care about and care about YOU to have surgery. are you being emotional about the issue? who cares! it's your body! and, personally, i think you have every right to be emotional as hell about it! i know i was extremely emotional about the possibility of having surgery when i was initially diagnosed, afraid that that might be the only option. this site is proof to the fact that surgery in, in fact, NOT the only option. take your time and look around here.

(oh...and as to the support, i think there is something called a v-2 belt that provides external support. maybe you could do a search on the site about it or just start a post asking about women's experiences with it. the ulcer thing the doctor said?...i don't know. that doesn't really make much sense to me, frankly.)

please take your time with all this information and the choices that are out there. and the choices really do exist.

take care.
xsusan

Thank you so much for your response. This is just the encouragement I need. I have read Christine's book once (ten minutes here, fifteen there) and think the posture will be a good place to start. One thing at a time, please. Is there ANY way to locate the martial arts practitioner your friend once worked with? I really want to know what things I can actually do without making things worse.

I will try searching for a v-2 belt. What I have now, I made myself after not being able to locate an old fashioned elastic sanitary belt. I took medium elastic to make a belt, and wide elastic to form the crotch and sewed it to my size. I wear it with an overnight pad for enough padding to provide support and to protect my crotch from direct contact with the elastic. When I noticed a slight discharge, I had it checked; the discharge was harmless, the doctor said caused by the rubbing against the pad, and that continued use would cause an ulcer of the tissue - the vaginal tissue is thin. I use it anyway at work, because the children's teacher simply cannot walk crouched over and limping and clutching her crotch.

Again, thank you so much, and Sue (supadeja) and Louise (louiseds) too.

I live on the border of Loudoun and Fairfax counties in Northern Virginia. Is there anyone in my area?

Thanks supadeja. Please read the response to howdidthishappen? It is for you, too.

Thanks so much for your response. Please read the response to howdidthishappen? It is for you, too.