Topics covered in this issue include:

1 Infuriated! by E.D.
2 Post Hysterectomy Dysphasia by E.
3 Estradiol Test and Barium Enema by N.P.
4 Rectoceles, cystoceles, vaginal vault descent by D.G.
5 2nd opinion battle by J.A.
6 One woman's opinion by L.

Today I went for my long-anticipated trip to the endocrinologist. I had TAH/BSO on July 15th. Absolutely no libido. When I initially made the appt THREE months ago, I asked the nurse if the doctor prescribed natural hormones and did hormone testing. "You'll have to discuss that with the doctor" was the response I got.

The January 17th appt got cancelled THAT DAY...an emergency came up. I was upset, but understood. I just wanted to meet with her to finally get some answers!

Today was the day. First I was weighed (!!) why??? I knew almost from the moment she stepped into the examining room that I was wasting my time...she had no intentions of testing hormones, no natural hormones, did not seem to know what a compounding pharmacy is, the list goes on and on.

The final straw was when she decided she would prescribe some testosterone cream, but had to go to her office to do some research on it!!! She came back with a prescription (about 10-15 minutes later) for a 1% cream, and told me that I need to put the cream directly on my labia or clitoris... it just might cause hair growth there or enlargement!!! Oh, yeah, that's what I want!! I did not fill the prescription and will make an appt with another doctor that a Sans-Uteri member told me about. But how long will I have to wait for that appt???

She also took a phone call while in the exam room, and discussed a patient with another doctor, with me right there!

Well, thanks for letting me vent....it put a damper on my entire day...and now I'm back at SQUARE ONE again! Any encouragement or ideas would be appreciated........

Dear Ladies

I underwent a total hysterectomy in June 1998. At a follow-up examination in July 1998, I advised the physician of "irritation" on the vulva (major labia). After checkups and four prescriptions of various ointments, a biopsy of the area has now revealed "moderate dysphasia of the vulva."

My physician has recommended excision of the pre-cancerous area. I agree. I have an appointment on Monday to discuss whether it is "outpatient" excision with only stitches or excision with reconstructive surgery requiring a hospital stay and the consult of a plastic surgeon. I understand that the amount of affected area is determinative.

If any of you have undergone vulvar surgery, I would appreciate your thoughts.

Thank you

Are there any tests for estrogen that are reliable, not too expensive, and do not need to be done in a doctors office? My estradiol test costs $88 and is a three hr. roundtrip drive.

Also, has anyone had a barium enema? A GI doctor would like me to have one and I am not too keen on it, mainly because of the radioactive particles.

Patti wrote ".... he forgot to tell me that it helped prevent prolapsed so now I have had 4th degree rectoceles and cystoceles and complete vaginal vault descent. That is a fancy way of describing when your entire vagina falls out of your body. When I asked about possible complications......he forgot to mention that one!..."

I badly need to find out more about this. I've had painful intercourse for about ten years. I'm only 43 but had a TAH/BSO at 23. A gynecologist once told me I had "some vaginal atrophy and prolapse but nothing serious...and besides nothing short of heroic surgery can be done..." In other words, I'm uncomfortable explaining this to you because it might incriminate the fellow (for all he knows it was one of his golf buddies) who did (botched?) your hysterectomy so just live with it and shut up. Well, it might seem heroic and unnecessary to him but if I knew more about it I might think it a good idea if it would improve my sex life. I (and others I bet) will be grateful to anyone who knows anything about this who will elaborate on this forum.

What are rectoceles and cystoceles?
Is vaginal prolapse the same thing as vaginal vault descent?
Can doing exercises like Kegels help this condition?
Can't this condition contribute to eventual urinary incontinence?

I wish to thank all the ladies who have responded to me both on the forum and privately. I was very depressed at the time of writing but am feeling better now, thanks to your encouragement. Also, since writing, I have had a 'phone call from my GP saying that he can refer me to a Urogynaecologist but in another area and would I be prepared to travel? We're only talking about 20 miles or so - I'd probably go to the moon for this second opinion I have been fighting to the death for!! Anyway, since my problems are all to do with my bladder and the fibroid apparently (according to first gynaecologist) pressing on it, I will perhaps get a more in-depth conversation about whether this is the problem, and if so, whether hysterectomy will be the miracle cure the original gynaecologist seems to think (or at least tells me). I will probably have to wait until April/May until I see the new consultant (thankfully, a female).

Hi,
This is my first post (pretty long) so I will begin with a little background.

I had bouts with endo all my life. I first went into hospital with it at the age of 18 (they didn't understand it very well then). At the age of 45, after 3 years of progressively worse excessive bleeding from fibroid tumors, I was given Lupron. As I was about to begin my second marriage, I thought this was a ray of light for me. Not only did the Lupron not work, but it threw me into full menopause on the very night of my wedding night. I remember sitting at a romantic dinner with my new husband and suddenly needing to pick up the napkin to stop the huge beads of sweat from dropping into my soup. I had a TAH/BSO (does this mean the cervix too? Mine was removed) six years ago after only two months of marriage (I was a very young 46) which rocked my world in so many ways that there is not room enough here to list them all. I gained 40 pounds the first year and another 10 and no diets worked - not a single one. It is only in the last year that I have been able to come up for air emotionally, though I have now been diagnosed with degenerative arthritis and I have had to use a cane all year from excruciating pain due to damage to a weakened iliopsoas muscle. (This muscle wraps around the pelvic bone and used to attach to certain parts of the body now history. It easily becomes damaged.) I mention this because it is the latest in the rich pageant of weaknesses, indignities and illnesses I have undergone and survived.

I have been reading the SU postings with relief and deep interest for the last few weeks. When I was seeking help for the fibroids, I found nothing like this. I continue to be shocked and horrified that so little is changing in this area.

This is one woman's opinion on the subject of surgical abdominal intervention.

As it stands now, the public does not encourage and the government does not require a doctor to publish, explain, or even know - or even know - a full list of the effects that such operations can and will have on the patient/victims lives in the future - before he/she performs it. The expense of proper hormone research/ accurate testing and replacement etc. is obviously considered prohibitive for the insurance companies to cover as standard procedure even though it should be nothing less. The unresolved issues that follow the operation are deemed to be a "woman's" own problem and not a matter for follow up care. This throws the entire thing back on the woman, already a victim, who must now try to make her way through the uncharted realms that face her alone and unaided.

More serious research should be done to find the cause of these effects that women are being mutilated for. Otherwise we are just trading one illness for another, or in the case of many of the women who have had these "procedures" perpetrated upon them, one illness for many others that go on and on ad infinitum without relief.

There are two separate but equally important issues here. The one, to clean up the system to prevent these things from continuing to damage the lives of women. The other, not so often talked about, is to study the ways to help the women who are now mostly dismissed with a bottle hormones that, for the most part, will cause more problems than it solves, make the lives, from birth to death, of one of the most beautiful animals on earth a living hell, but keep a certain pharmaceutical company laughing all the way to the bank. An ovary contains more than estrogen, guys. Let's get real.

We are making advances in research so rapidly that the popular wisdom of even ten years ago sounds dated and ridiculous to us. With all our subtlety and sophistication, why then does the "treatment" of a woman's reproductive system continue to be so gross, so final and so barbaric? Watch where the money goes. It is most certainly not going into the study of woman's chemistry, so that we might prevent these tragedies from occurring, or, if they must, in the case of cancer patients, providing us with the ability to control the outcome so that a woman may expect more out of life than merely continuing to live.

When we speak of surgical menopause, we speak of nothing more or less than castration, whether we like to use the word or not, we should use it. I think it is a political word. It is a word that makes people uncomfortable and they will not like us if we use it. We should get used to using it, though, so that we make as many people uncomfortable with it as possible, for only then might we see some righteous indignation ignite in others and some steps be taken to eradicate this abomination.

For all we are worth we should not forget the women who are having to make their way in the dark with so little information or help through this confused and embittering experience. We must lend our voice to the job of bringing them back from being just a statistic.

As a positive, right now, we must make of ourselves researchers. We must relearn to trust the wisdom of our bodies. We cannot mend what we refuse or are inhibited from acknowledging is wrong. We must mine the research on aging for all it is worth. The study of surgical menopause must also be the study of aging. All the conditions of age are in a breathtaking moment imposed upon the woman who has been castrated, whatever her chronological age.

Above all, we must realize that we are victims but we can outgrow victim mentality. Our struggles to find our balance should be a beacon for all women. We can turn our vulnerabilities into strengths as we demand better futures for ourselves and our sisters.

All other things being equal, I believe there are holistic answers to the imbalances that we are subject to. I believe that we can and should take our power back over our own health and our own bodies. If we are lucky enough to find a health professional who is willing to work with us this way, so much the better, because once you are on a hormone or protocol, often you can't just stop it cold.

I use progesterone cream and DHEA and pregneneolone cream (both are hormone precursors for what hormones can still be made in the adrenal glands) I drink a soy (tofu) drink every day of my life and the phytoestrogens it contains truly make a difference, truly help to balance me out. Explanation at homearts.com. There is a triple estrogen (estriol, estrone and estradiol) cream called Ostaderm that one can use The natural plant derived estrogens have the same chemical structure as the estrogen produced by the body. The synthetic hormones have different chemical structures and therefore different side effects. Evidence is accumulating that the negatives associated with estrogen replacement are caused largely by the form in which it is given. (I have no interest in the company, it is the only brand I know about.) There are saliva test kits that we can order to test ourselves to see what hormones we need and in what balance. Because this sort of thing is not sanctioned by the powers that be, those same powers that led us up this garden path, it is all costly, doesn't come under any insurance - so it is a choice to make if we can afford it. Would that there were a foundation or a fund for this sort of thing.

In my research I have found a website from a Dr. Yue. Do any of you know of his work or of the hormone relaxin? It is something I feel that I will try when I can (again, it is expensive) as it seems to supply a huge missing piece of the puzzle. Dr. Yue's site is here. See where hysterectomy and oophorectomy is mentioned as related to arthritis and fibromyalgia. There is a link to purchase it on her site.

Perhaps this (in conjunction with a full complement of missing hormones) might help to restore the sense of wellbeing that we remember. We can but keep trying.

Thanks for letting me speak.

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