When I first “cracked the code” on stabilizing and reversing prolapse, and wrote and published Saving the Whole Woman, I set up this forum. While I had finally gotten my own severe uterine prolapse under control with the knowledge I had gained, I didn’t actually know if I could teach other women to do for themselves what I had done for my condition.
So I just started teaching women on this forum. Within weeks, the women started writing back, “It’s working! I can feel the difference!”
From that moment on, the forum became the hub of the Whole Woman Community. Unfortunately, spammers also discovered the forum, along with the thousands of women we had been helping. The level of spamming became so intolerable and time-consuming, we regretfully took the forum down.
Technology never sleeps, however, and we have better tools today for controlling spam than we did just a few years ago. So I am very excited and pleased to bring the forum back online.
If you are already a registered user you may now log in and post. If you have lost your password, just click the request new password tab and follow the directions.
Please review and agree to the disclaimer and the forum rules. Our moderators will remove any posts that are promotional or otherwise fail to meet our guidelines and will block repeat offenders.
Remember, the forum is here for two reasons. First, to get your questions answered by other women who have knowledge and experience to share. Second, it is the place to share your results and successes. Your stories will help other women learn that Whole Woman is what they need.
Whether you’re an old friend or a new acquaintance, welcome! The Whole Woman forum is a place where you can make a difference in your own life and the lives of thousands of women around the world!
Best wishes,
Christine Kent
Founder
Whole Woman
granolamom
December 13, 2010 - 9:00am
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cancer & hyster
I don't know, AnneH, but sending good thoughts and prayers for health your way.
{{{{{{hugs}}}}}}
AnneH
December 13, 2010 - 10:12am
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I would like to rephrase the question.
It seems indeed total abdominal hysterectomy is the "gold standard" for endometrial cancer. Apparently they can't rule out spread (or source) to(from) the ovaries without removing them. Removing them is part of staging, so you can end up with a radical hysterectomy including node dissection and then be told you're only stage I. Also, it seems chemotherapy isn't that effective with endometrial cancer. There are ways to treat it without hysterectomy but this is done only on young women who want to preserve fertility, women who flat refuse surgery, and late cases where palliative care is all that's needed. All the rest, without exception, get TAH. In fact, TAH is also the treatment for atypical hyperplasia - the alleged pre-cancer of the uterine lining. (Even though there's evidence that hormone therapy can cure these in up to 75% of cases.)
They really are cavalier about this, bragging very high survival rates. What is missing from all the data is the quality of life of the survivors. Therefore, the question becomes HOW do you do the surgery to minimize pelvic prolapse consequences? I'm sure there is a school of thinking that says "if you have POP problems then 'while we're in there' let's give you a sling/rear wall plasty' and so forth". There have GOT to be better surgeons and worse surgeons. Ones who leave the vagina too foreshortened, and ones that leave a less unacceptable mess than not. How on earth does a patient go about evaluating surgeons for this kind of detailed technique?
At first glance perhaps you'd want a gynecological plastic surgeon who treats POP to be involved in the surgery, but on second thought, if I avoid surgical treatment of my POP before, why would I want his input now? Maybe you're better off doing the minimal cutting and pasting possible, after you've removed the (extensive) tissue required by the cancer diagnosis. How does one even go about evaluating such a thing? You can look at "survival rates" for various surgeons and cancer centers, but of the survivors, where do you find data on how many have more or fewer prolapse complications - never mind over the long run. I'm probably asking the impossible. Maybe what you do is go to the closest high-ranking gyn-onc and just take whatever you get.
The reason I'm going off all half-cocked is that if you have post menopausal bleeding the chances that it is cancer are from 10% to 25%. (I saw sources that said as little as 5% or as great as 33%.) That's close enough odds for me to research this FIRST so that if the news is bad I already know where I'm going to go and what I'm going to let them do. I won't be swept along with whatever referrals are thrown my way, in terror going along with whomever will "get it off me!" the fastest, because if I hear the C word, I know that's how I'm going to feel. If I have cancer, I don't want to just survive, I want to survive as comfortably as possible.
AnneH
December 13, 2010 - 10:13am
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Awwww thank you!!!!! :))
Awwww thank you Granolamom!!! :))
colehollow
December 13, 2010 - 10:32pm
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Research
Hi AnneH,
I admire you so for arming yourself with knowledge. You seem to me to have very reasonable questions that need answers. Power corrupts, and more power corrupts more. Doctors have a great deal of power over us in our lives, and I would not allow a doctor to lift a scalpel in my direction without displaying big dose of very specific information as well as humility.
Have you begun to sort through the alternatives to medical solutions to cancer? Last year, after much consideration, I abandoned mammography for thermography to avoid the high radiation and squeezing that many believe can cause and spread cancer. Again I dodged a barium enema (which this time would have meant even more radiation) for my incomplete colonoscopy (I have tortuous colon) by switching to more of an anti-cancer diet. I figure that the medical community can make much more money prescribing medical and pharmaceutical treatment than by prescribing good food. If they say I have a high chance of getting colon cancer, they had better tell me a specific percentage over a specific period of time (of course they tried to scare me with slick verbiage). My own research more accurately told me what kind of wiggle room that I have to try something else.
If you are up to finding possible other ways, read deeply what someone like Dr. Mercola has to say about cancer on his website. His articles are full of references to continue from. He is a DO as well as a watch dog and a whistle blower, and so far I have little to fault him for.
I can't say I have any more specific advice on your problem. Hopefully statistics turn out to be on your side and you never have to face the doctors. Just know that I support all of your efforts. As a matter of fact I am on the sideline cheering you on!! Please let us know on WW where your quests take you.
AnneH
December 13, 2010 - 11:52pm
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Thanks for your comments and
Thanks for your comments and support. It's fascinating that you talk about how we eat as I am reading "The Omnivore's Dilemma" by Michael Pollan and it is absolutely blowing my mind. It's not that I didn't already know how industrialized and, well, fake, the food in the grocery store has become, it's that this guy is heaping tons of facts and reality on top of what I am sensing every day. For example, I've noticed the past few years how runny eggs have become. I crack one and the white runs like water. That just isn't how eggs used to be when I was young. Not having seen a farm egg in a couple of decades, I hadn't realized the insidious change that has taken place, but these store bought eggs, the result of chickens bunched up in cages and fed some version of processed corn, actually results in less healthy eggs. I buy "free range" food only to discover that the organic movement has itself sold out to big industry, and what says "access to outdoors" on the label really means a little strip of grass outside the shed that the animal never really uses. To find out that if I buy an "organic" chicken, that only means the chicken was fed corn that was grown without pesticides and artificial fertilizer, but that is still an artificial, unhealthy chicken. Chickens are supposed to be eating maggots, grubs and grass. And the egg whites of such a chicken are, apparently, not runny!
Anyhow, that does it. I've placed an order with the local grass farmer co-op and I'm moving to real food. I took a quick look at Dr. Mercola's website and I think he's on the right track. I agreed with the couple articles I read. And I think you too are very wise; the benefits of mammography are over-sold to us. Just because technology has brought us some wonderful things does not necessarily mean everything they have brought us is wonderful all the time. We always need to investigate and make our own risk/benefit decisions and choices.
I spent all day online finding specialists near where I live (and planning to fly where they are if I need to) and I think I do have my "plan B" Maybe I'll end up with a hysterectomy but if I do, it will be because I saw no alternative and exhausted every other option. In the meantime I am going to TRY TRY TRY to relax. I have GOT to finish getting ready for Christmas; I can't let this mess ruin the holidays.
Best to everyone!
alemama
December 14, 2010 - 8:51pm
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no answers
Hey AnneH, How's your prolapse? When did the bleeding start? How long has it been going on? When did the pain start? Is it all day or just sometimes?
I hate the idea of a biopsy. Whew, my thoughts are with you as you deal with this worrisome event.
I love your observations about fear of the female reproductive system. So interesting. I'm also so impressed by your attitude, not just wanting to live, but wanting to live comfortably.
I sure hope it's just nothing and you did all your research for nothing ;)
(ps. how's your leg?)
AnneH
December 16, 2010 - 12:27am
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My prolapse has stabilized
My prolapse has stabilized completely. The bleeding started 3 days ago and it is exactly like a period, cramps and everything. I am really hoping it's just a "stress" event of some sort. I haven't had a period in three years so it's definitely considered postmenopausal bleeding (abnormal) by the medical community. I'm getting an ultrasound tomorrow. The results will determine whether they just watch and wait or go on to do a biopsy. Endometrial cancer investigation is a little different than others; the ultrasound is a good alternative to biopsy. My leg swelling has improved but I've had a whole lot of pain in both legs and low back recently. I agree, I hope all my investigation will have been for nothing! But I have learned a great deal and I'll put it to use anyway.
louiseds
December 19, 2010 - 5:25am
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Cancer? Maybe. Maybe not.
HI Anne
Sorry to hear that you are having these problems. Post menopausal bleeding can be a very lonely place to be. It is not always cancer, but sometimes it is. You are right to be doing all your own research to balance out what the doctors are telling you. At least you will understand them a bit better too.
Dr Christiane Northrup, in her book, Women's Bodies Women's Wisdom, says, "After nearly 20 years of medical practice, I continue to be amazed by how clearly menstrual cycles and bleeding are connected to the context of our lives. Abnormal uterine bleeding is always connected to family issues in some way." She continues to describe cases where women have experienced this, both during childbearing years and post menopause . She says, "I always ask her what is going on with her and her family. She will often tell me that an emotionally significant family event preceded the bleeding."
Her website is http://www.drnorthrup.com/ . You might be able to find her books in your local library system. She has also written The Wisdom of Menopause.
Anne, I would be looking at doing the least invasive thing first, and make your decisions one at a time. I have no idea how you go about assessing surgeons, other than my word of mouth, or by trusted referral.
Just don't get bound up by fear. The truth will reveal itself. Just deal with it when you know what it is. At the moment you have several threatening monsters staring you down. You may end up fighting just one of those monsters, or you may be fine, just as you are. The female body has a life of its own. Take care. Big hugs across the sea.
(((((Anne)))))
Louise
AnneH
December 20, 2010 - 12:39am
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Louise thanks for your great
Louise thanks for your great reply. I had the endovaginal US and have not got the official results yet, but the technician was very kind to answer my question "what is the endometrium thickness?" during the test. Less than 4 mm means very unlikely to be cancer, and it was 3mm. YAY!!! What a huge, huge relief. I was confronting cancer and mortality for a few days there. I hope I learned something and can appreciate life and health for the time being. Life is short.
Yes, I had read that "stress" could cause postmenopausal bleeding but hadn't heard Northrup's theory about family issues. I am reeling from devastating personal and family issues: a death in the family, and my daughter's cancer. Indeed, this is probably related to that. Immune system reaction, hormone reaction, whatever. The body and the emotions are literally connected.
But here is what I came away with for the future for endometrial cancer investigations. Questions for the doctor, for example:
Why must I lose my ovaries to stage? If they are cancer free I could have kept them.
Why have a hysterectomy to stage if there is evidence I'm already stage 4?
And so on. Should this come up again, I plan to work out a particular personalized investigation that will leave me as intact as possible. Do PET scans and CAT scans FIRST. If there are distant mets, I might choose not to have surgery, only palliative radiation for example. If an endometrial biopsy is positive for cancer, do a D&C to confirm FIRST, before considering hysterectomy. And so on. Big Medical will balk and complain and my insurance may not go along with it, but to hell with them.
louiseds
December 20, 2010 - 1:57am
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Yay!
Anne, it sounds like you have just the right attitude to be able to cope reasonably well with any scary monsters they can throw at you. I think it was just this morning I read something along the lines of "doctors treat the human body as a thing that things can go wrong with. It is our job to find things that are wrong and cut them off or poison them" or words to that effect. Nothing about "What is normal?" or "What are the limits of normal?" or "What is causing this?" or "Are these symptoms possibly harmless?" I don't think they will get away with much with you!! Good on ya. It is your body, not theirs!
Wow! I am amazed that Christiane Northrup's theory could be true. See if you can borrow Women's Bodies, Women's Wisdom from a library. She really is a very interesting doctor. You might even be able to go visit her, if these tests show some abnormalities and you need somebody who understands about the more subtle ways our bodies express themselves.
I can go on forever about how they always give us the worst possible prognosis to scare the living daylights out of us and make us feel dependent on them for salvation, as if they were God or something. However, in the longrun it is probably better that they rule out the potentially life-threatening conditions before deciding whether or not a 'minor' symptom is harmless. They are not fools, just foolish sometimes.;-)
I am reminded of a nurse friend of mine who had experienced menopause prior to being with her daughter during a pretty traumatic first labour and birth. Several weeks later the mother had a full blown period.
I am so sorry that you have had these traumas in your family. S*** happens. You just gotta roll with the punches and be kind to yourself, so you are in good shape to look after others as well. I do hope you can resolve this.
Take care. You are right. These experiences do sharpen up our responses and our sense of making the most of what we have.
Louise
bad_mirror
December 20, 2010 - 2:28pm
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Sensible theory
Dr. Northrup's theory makes complete sense to me. Several lowly species in the animal kingdom have the ability to completely change their *sex* if needed in order to preserve a continuation of the gene pool in threatening times. In my mind, it follows that something primal can be triggered in the menopausal human female should her gene pool be threatened. All the equipment, though quieted, is still there. Endocrinology is an infinite mystery, and my humble guess is that the potential for hormone production remains even when operations appear to have ceased.
granolamom
December 20, 2010 - 7:47pm
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(((((((((AnneH)))))))))
sending lots of love your way
louiseds
December 20, 2010 - 8:34pm
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Oestrogen production does not cease at menopause
Hi Bad-Mirror
Thanks for pointing this out. These abilities have, no doubt, contributed to the continuation of species and their gene pools from time immemorial. It is like an automatic 'rabbit up their sleeve' when the going gets really tough.
Plants do a similar thing. Vegetables when stressed, bolt, or go into fruiting phase prematurely.
Crocodiles can change the sex of their eggs by adjusting the temperature of their nest.
Kangaroos can put their tiny little babies (About 2cm long when born, they claw their way up into the pouch and and attach semi-permanently to the nipple) into 'suspended animation' in their pouch if the conditions outside the pouch are not conducive to growing a joey to independence, and to prevent excess milk production which would compromise the mother's ability to survive drought. When the drought breaks the joey begins to grow to maturity.
Our sheep seem to change the ratio of ram to ewe lambs, depending on conditions at mating. In good years there are slightly more ram lambs born (or survive) to make the gene pool more diverse, whereas in bad years there are more ewe lambs, perhaps to ensure that there is a greater supply of breeding stock survive, and less 'non-incubators' eating all the food available.
Hormone production doesn't actually cease in the ovaries at menopause. I saw one paper cited in Womens Wisdom Womens Health that demonstrated that women's ovaries can produce progesterone and oestrodiol for decades after menopause. In the book, Woman's Body: A Manual for Life, by Miriam Stoppard there is a diagram that demonstrates that there is *still* a wave cycle of oestrogen levels in a woman's body after menopause. It is about 10% of the peak height of the oestrogen level during fertile years.
In addition to residual oestrogen production from the ovaries, oestrogen is also produced in other parts of the body, ie pineal gland in the brain, hair follicles, breasts, liver, adrenal gland and body fat. After menopause the adrenal gland increases its oestrogen production, presumably to counteract the decrease in oestrogen from the ovaries. It is an amazing system!
As far as I can see, all that happens at menopause is that the part of the ovary responsible for making follicles changes, and can no longer respond to the pituitary's release of follicle stiimulating hormone. This refusal to make a follicle causes the pituitary to continue its high FSH production after menopause. The supply of healthy eggs also runs down as a woman gets older.
I posted a description of the hormone cycle under Orangewoman's topic called Hormone Changes. I have also found a wonderful set of pages about Menopause here, http://www.50plushealth.co.uk/My-Health/Menopause/What-is-the-menopause%3f/ , where the same process is described.
So you are right, it is all still there, as long as the woman has ovaries and their blood and nerve supply has not been compromised by surgical intervention.
Louise
bad_mirror
December 20, 2010 - 9:31pm
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Thanks Louise, for broadening
Thanks Louise, for broadening this topic. I actually did know that estrogen production continues for the lifespan of a woman, and should have phrased my last sentence differently *blush*. How fascinating about kangaroos! Talk about interesting endocrine dynamics! How smart all we creatures are! Really miraculous to have these potentials to keep our kind on earth!
louiseds
December 20, 2010 - 9:56pm
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Mindblowing indeed
The more I find out about this stuff the more awed I am that we exist at all! It is all so sophisticated. I personally find it more and more difficult to believe that there is no deity or life force or whatever behind the whole universe.
BTW, you are forgiven for your last sentence. All this stuff I am finding out about menopause and how it relates to earlier and later years is, like Christine's POP evidence, hidden very well in diverse places. Normal hormone function after menopause seems to be TMI, or totally irrelevant.
The other possibility is that nobody has a commercial interest in de-mystifying it. It is easier to treat menopausal women as 'sick' and 'fix' us in exchange for money.
Even books about women's health in general seem to devote only a fraction of the pages to perimenopause, menopause and beyond.The average Australian female life expectancy these days is about 78, I think. That is approximately 25-30 years post menopause, along with another 5 or ten years perimenopause, which follows on from about 35 years of fertililty. Hmm, that sounds more like 50/50 to me.
Why the silence on menopause????? Because for some reason it is as if we do not exist. We become invisible in a world that worships youth and airbrushed skin, gravity defying faces and boobs, and all that youthful marketing stuff. I am sure that is why we so many older women wearing pastel shades. They *are* almost invisible.
GIVE ME RED AND PURPLE AND ORANGE!!!
L
;-)
AnneH
December 20, 2010 - 11:15pm
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Wow, thank you all for the
Wow, thank you all for the comments and support! What a theory... my child's life was threatened (cancer) so maybe my reproductive system cranked up a bit in response, for survival of the species. Amazing possibility, an exciting and positive way to look at it. (Not something "wrong" with me.) I do believe our systems are far more subtle and complex than modern medicine imagines.
louiseds
December 20, 2010 - 11:28pm
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Keep your feet on the ground, Anne
Hmm, maybe. Here's hoping.
Louise