13 Health (Mis)Information for Women
The belief that female reproductive organs are expendable equipment, dangerous and dysfunctional outside of childbearing, continues to provide justification for aggressive surgical practices.....
An aggressive surgical attitude towards the female reproductive organs is a betrayal of women's trust, as well as a violation of patients' expectations regarding appropriate physician behaviour.
The Men Who Control Women's Health: The Miseducation of Obstetrician- Gynecologists by Diana Scully
I first wrote to Women's Health, which used to be WHRRIC, in London on 1 April 1992, just after I had found out that for the last six months my medical centre knew I was anaemic but never bothered to inform me. I was feeling very depressed and apprehensive at the time, and wrote a rambling hand scrawled letter about how if I had to have major surgery then I didn't want it to be a mutilation. I heard nothing from them and some time later my sister telephoned them and they sent a couple of their factsheets, one on hysterectomy which I sent back with a note that I was NOT having it.
I wrote a year later on 4 April 1993.
Dear WHRRIC
Your fibroids leaflet of 1988 says that comments are always welcome so I'm commenting.
I was found to have a large (about 23 week size) fibroid mass a year ago and since then the medical profession has tried to push me into mutilation - which I'm not having.
I have read about fibroids and their treatment since and I enclose references to what I have read which indicate that:-
A) myomectomy (removal of fibroids only) is possible in almost all patients
B) hysterectomy is performed as 'the operation of choice' in most cases - no justification for this given
C) the patient is not informed about the considerable number of adverse effects of hysterectomy
D) the female reproductive system is generally regarded by the male dominated medical profession as totally disposable and of use only in producing babies for men.
I also enclose the text from a leaflet from the Hysterectomy Educational Resources and Services Foundation, 422 Bryn Mawr Avenue, Bala Cynwyd, PA 19004, U.S.A. They do not have the rosy view of uterine amputation that others have.
As Roos has noticed on average you finish up seeing the doctor just as often after amputation as you did before. Moreover the threat of osteoporosis in later life is so significant that the Osteoporosis Society has produced a booklet on Hysterectomy and HRT. I wonder if this "epidemic" (as the Society calls it on their leaflet) is directly related to the increasing numbers of amputations and castrations performed in the western world this century.
Avoiding Osteoporosis by Dr A Dixon & Dr A Woolf pg 22:-
"Some women have to have their ovaries removed because of disease. For them, all the usual post menopausal problems are likely to come on quite severely, and most doctors would consider it almost unethical not to offer treatment with hormone replacement therapy. However what is not always realised is that this should be continued for many years, possibly until age 60 or more, if the almost inevitable osteoporosis is also to be avoided."
P Fogarty Ulster Med J vol 60 (2) Oct 9 pg 172:-
Surveyed gynaecologists in Ulster and found of 43 replies.
72% performed prophylactic oophorectomy (female castration performed on the off chance of later ovarian cancer).
10% used oestradiol implants at the time of surgery, 57% prescribed hormone replacement for premenstrual women, 33% only prescribed if the patient became symptomatic.
This means that according to doctors Dixon and Woolf 33% of castrated women in Ulster are being left to "almost inevitable osteoporosis" unless they return complaining of symptoms. I find this alarming.
In their "Principles and Practice of Clinical Gynecology" Weingold, Kase and Gershenson state:-
"The ovulatory cycle is driven by the timely sequence and appropriate quantities of FSH and LH and is sustained by the local production of steroids and other hormones within the microenvironment of the dominant follicle. The entire mechanism is directed with exquisite precision by the secretion of steroids which, acting as feedback signals to the anterior pituitary and hypothalamus, orchestrate the secretion of the gonadotrophins. Thus, dynamic relationships exist between the pituitary and gonadal hormones which allow for the cyclic nature of normal reproductive processes. The hormonal changes are tightly correlated with morphological changes in the ovary, making the co-ordination of this system one of the most remarkable events in biology."
These activities are not functionally replaced by an oestrogen plaster on the bum. HRT may alleviate the symptoms of castration - it does not replace the ovarian cycle. The enclosed sheet from J J Kabukoba's article on HRT by implant showing that of 38 women returning with menopausal symptoms only 3 had hormone levels in the menopausal range and 9 had excessively high oestrogen levels demonstrates how tricky hormone replacement can be. Is it really good practice to save a few women from future ovarian cancer by exposing many to the vagaries and inadequacies of HRT? For the gynaecologist who mutilates and then abandons the patient this may be fine, for the patient herself surgery could be the start of years of misery.
The Osteoporosis Society apparently regards being able to get HRT from your GP as one advantage of being castrated - a rather high price to pay for your cheap horse oestrogens I would have thought. Or is this an indication of the difficulties of getting adequate osteoporosis prophylaxis on the NHS? As the Society notes more women die after hip fractures than from cancer of the ovaries, cervix and uterus. But HRT is not as interesting, or perhaps as easy, as castration.
I have written to a number of gynaecologists about myomectomy but most replies are what I would call 'evasive, condescending claptrap' though the enclosed letter I recently received from Prof Tizzy repeats the textbook, his included, statement that fibroid(s) can be removed from and not with the uterus. I remain convinced that the preference shown by medics for female amputation is due to surgical convenience and contempt for female organs. The same sort of contempt they show for the ovary.
If you know different please enlighten me.
I enclose copies of two letters I received after writing to the Royal Society of Obstetricians and Gynaecologists. One asserts that myomectomy is "well within the expertise" of most of their members (something I have doubts about) and the other states that he has performed myomectomies on women who have been offered only hysterectomy. If myomectomy is "well within" their expertise and possible "in almost all patients" why don't all gynaecologists offer it, or at least refer a woman to somebody who can instead of telling them to come back when they have changed their mind about mutilation?
I hope future fibroid leaflets will tell women that (unless the gynaecology books lie) myomectomy can be performed in almost all patients and that the chance of a hysterectomy being necessary operatively is very unlikely especially if GnRH-a have been used to pre-operatively shrink the fibroids. And if they haven't been used - why haven't they?
The Osteoporosis Society booklet states that fibroids and abnormal bleeding together account for 75% of hysterectomy cases. Since almost all fibroid cases could be treated with myomectomy and most heavy bleeding can be halted with endometrial resection or ablation I regard three quarters of all hysterectomies as unnecessary.
In the January edition of the British Journal of Obstetrics & Gynaecology R J Slade et al report shrinking myomas with a GnRH-a and then performing endometrial resection on six women with fibroids ranging from 12-16 weeks size. They record that 18 months later the fibroids had not regrown and suggest that the endometrium is necessary for myoma growth. I'm sure most fibroid women would rather lose their womb lining in an outpatient procedure than have their bodies ripped open in major surgery and their wombs excised. Further trials are apparently proceeding at the John Radcliffe hospital, Oxford. Perhaps if they are conclusive hysterectomy for fibroids may be obsolete within a century or so, though I'm sure many medics will be reluctant to give it up. I wrote to the WHRRIC in some distress a year ago and received no reply. However if you do get round to writing to any fibroid womb you can tell her that she can have just the fibroid(s) removed - she has prof Tizzy's word on that. The best I think she could do would be to write direct to the RCOG and ask them for the name of the nearest gynaecologist adequately experienced in myomectomy. In the meantime she could try an alternative therapist. I've heard that acupuncture can be effective if the fibroid is not too large (like mine) and homeopathy may help. I'm going to a herbalist. It doesn't seem to be making an impression on the mass but I'm willing to give it a year and at least I'm not being threatened with mutilation. If you know of any reasons why a woman should undergo the mental trauma and physical risks of hysterectomy rather than have an attempt, at least, made to conserve her female organs please let me know. No gynaecologist I have written to has come up with any excuse - good, bad or indifferent. I just get dogmatic, unsupported assertions of the superiority of hysterectomy or silence.
Finally I have read, even in the male dominated medical journals, of references to women who wished to avoid hysterectomy or put off hysterectomy as long as long as they could. Yet I've been told of, and even spoken briefly to, women that are quite happy to fixed and don't regard their organs as being of any use after childbirth. Is this because of extremely severe symptoms, brain washing by male chauvinists or are they mentally deficient? It puzzles me greatly.
Yours sincerely
P Nomark
The reply was dated 10 May 1993.
Dear Ms Nomark
Thank you for your letter and very useful information you sent us recently. We have passed your letter and references on to our editor to read before updating our next fibroids leaflet.
We appreciate the time you have spent compiling this information for us. We agree doctors are usually too quick to suggest a hysterectomy for fibroids/heavy bleeding etc, when myomectomy or TCRE can be performed in the majority of cases.
Yours sincerely
Glynis Donaught
P.S. We are sorry you received no reply from us a year ago. We normally answer enquiries within 2-3 weeks. We can only imagine your letter or our reply got lost. Sorry.
I was not an information agency. I had written to Women's Health because what I had read made me feel that the entire subject of hysterectomy was wrapped in half truths, deceit and lies. I thought that a charity supposedly dedicated to furthering women's health issues would know the true medical facts and state them if asked. Instead all I seemed to get was invitations to buy more of their leaflets and booklets. My next letter was dated 18 June 1993.
Dear Ms Donaught
I wrote in April about fibroids, the alacrity with which the medical profession proceeds to female mutilation and their extreme reluctance to perform conservative surgery.
I have recently come across a book called "The No-Hysterectomy Option"
whose co-author is that rare beast, a gynaecologist who does not want to mutilate every woman who passes through his door. I would recommend it to any woman threatened with this unpleasant amputation and think you should also. I particularly like his assertion that a decision to have surgery should be taken BY a woman after careful consideration of the facts and not imposed ON her.
Concerning fibroid recurrence after myomectomy the book says:-
"However, if a woman is 40, the chances are overwhelming that she's not going to have problems after myomectomy because the menopause will intercede."
Yet, as the sheet I sent you shows, hysterectomy with its plethora of risks is "the operation of choice" for a woman over 40, even though she has the least risk of further fibroid trouble. Moreover the patient is never consulted and treated more like a specimen than a rational being (own experience).
Also could you tell me if any of your publications is going to mention the full range of hysterectomy's unpleasant effects - the risks of heart disease, osteoporosis, osteoarthritis, depression and sexual dysfunction. Dr Goldfarb mentions them in scattered passages around his book, Miriam Stoppard concentrates on depression, the Osteoporosis Society mentions osteoporosis but leaflets I've seen on Hysterectomy always omit the operation's true nastiness. They often put up an Aunt Sally saying "old women say it will make you fat but this isn't true - if you make sure you take plenty of exercise and don't eat too much". Well of course you won't if you take exercise and mind your diet. They don't mention that roughly 40% of women report a decrease in sexual response after hysterectomy though Dr Goldfarb does in his chapter on "Coping with the Aftermath".
However you can't cope with an aftermath if your hysterectomist denies that it even exists. Isn't it time the truth was acknowledged? Isn't
it time women were treated as intelligent beings instead of pets to be fixed? And if not why not? I enclose a s.a.e. for reply.
Yours sincerely
P Nomark
When no reply was forthcoming I wrote again 12 August 1993.
Dear Ms Donaught
I have received no response to my letter of 18 June, in spite of the fact that I sent a s.a.e. and your letter of 10 May states that you normally answer enquiries within 2-3 weeks.
I must admit that yours is not the only organisation I have found to be peculiarly unhelpful. Considering that many thousands of women are treated with unnecessary hysterectomy because they have fibroids there seems to be a general reluctance to say anything about WHY these women are routinely fixed.
I enclose a cutting from Bella magazine showing that the connection between bone loss and hysterectomy was well known 5 years ago, although the Hysterectomy Network still hasn't caught onto the fact judging from their latest newsletter. Another more recent article shows that conservative surgery is performed when the medical profession knows it can't get away with routine mutilation. I was beginning to think myomectomy was extinct in England.
A local women's health group suggested that I write up my experiences, partly I think so they could use the information. I enclose a copy. Only the names have been changed. I should be interested in hearing any comments on it, though given your organisation's sluggish and superficial responses so far I certainly will not be holding my breath waiting.
Yours sincerely
P Nomark
Ms Donaught replied the NEXT DAY, 13 August.
Dear Pamela Nomark
Thank you for sending us your information, which we do read and include in our library, contrary to your comments.
We did not receive your letter of 18 June, otherwise you would have received a reply.
We find your letter very rude. We deal with thousands of enquiries from women each year. On a weekly basis we receive up to an average of 40 letters a day and about the same number of telephone enquiries. Most of our calls are from very distressed women trying to cope with their health problems and often, an unsympathetic health service, as you can appreciate yourself, given your own experiences.
We do this with only one full-time and two part-time enquiry workers. We feel completely engulfed with work most of the time. Our funding, moreover, is to concentrate on London-wide enquiries. We have, in fact, just lost funding to deal with national enquiries. Our priorities are to London uses, but we do answer letters from beyond.
In defense of our service I must say we receive hundreds of letters and calls of support from the many women we are able to help each year. In stark opposition to your letter of complaint.
We thank you for your 14 page account of your own experiences, this information will be read and perhaps filed in our library, with your permission, so that other women may read it too. We just haven't got the time to make comments because we're too busy dealing with the many other users of our services. We only wish we could reply to every piece of information you sent us, but alas we cannot. That does not mean your correspondence does not receive attention, it does.
Yours sincerely
Glynnis Donaught
I truly felt that I was writing from "beyond" - beyond the Bermuda triangle. I wrote a final letter on 28 August 1993.
Dear Ms Donaught
Thank you for your letter of 13 August. I am well aware that many women who communicate with you are distressed. As I wrote in my letter of 4 April this year I was in a VERY distressed state when I first wrote, and received no reply, in April 1992. As my letter of 18 June has also gone astray I have decided to send this by recorded delivery so I can be sure you get it.
I enclose a copy of the missing letter along with some more bits of information and your sheets.
As you should have realised from the information I have already sent I have already done research on the medical facts. What I asked for, and needed, was information on how the medical mafia deals with fibroid women - whether they are told that fibroid removal is nearly always possible or rushed to unnecessary mutilation for the convenience of the NHS and/or its operatives.
Many hysterectomists, in spite of evidence to the contrary, insist that women are better off without their reproductive system yet Dr Goldfarb states that 8 out of 10 women want their wombs preserving. I would have thought a Women's Health group would be able to say whether Dr Goldfarb is correct or not.
You apparently can neither answer my questions nor refer me to any group or individual that could do so. And as you are "too busy dealing with the many other users" of your service to make any comments it is obvious that your service is of no use whatsoever to me and I shall not write again.
Finally I should just like to remark that it is very strange that the only time I got a prompt reply from you was when I stated that I did not expect one. Your attack of pique has been noted.
Yours sincerely
P Nomark
Ms Donaught did not respond but somebody with an illegible signature did.
Dear Pamela Nomark
Thank you for your letter. In our experience many women with fibroids are advised to have hysterectomies but their treatment is usually dependent on 1) the size and number of their fibroids and 2) the attitude of the hospital/gynaecologist.
The general opinion is that large fibroids are very difficult to remove (or very many fibroids) and a hysterectomy may well be advised. This all however varies widely depending on the hospital and consultant.
In our experience again, many women do want to keep their wombs, although we tend to have those women who are seeking alternatives contacting us. I have also spoken to women who have been very relieved after a hysterectomy. Again this is all very individual, dependent on symptoms, psychology etc.
I don't know of any studies that bear out Dr Goldfarb's figures so can't comment on them'
Best Wishes
Bernadette?
An attempt to answer my question at last.
Women's Health produce a range of leaflets, which give good basic information on many health topics.
I believe it was one of their workers who was quoted by Vikki Hufnagel as saying:-
"Women are being sold hysterectomy as being the end of their problems - they go into it thinking just that - but it's major surgery: there's a 3 to 6 month recovery period afterwards, and in many cases where there is pelvic infection or ovarian scarring - it doesn't solve the problem."
In some cases it doesn't even touch the problem. Dr Mendelsohn relates the case of a Florida woman who had her womb and one ovary removed because of pain. The pain persisted and was finally traced by an osteopath to the fact that one leg was shorter than the other. She lost most of her reproductive system to a medical profession eager to cut everything out at the slightest hint of trouble and without adequate investigation when a lift in her shoe cured her aches.
I wrote to another advisory service for women on 10 April 1993.
Dear Women's Health Concern
I repeated most of what I had recently written to Women's Health and ended with:-
I remain convinced that the preference shown by medics for female amputation is due to surgical convenience and contempt for female organs.
The Patient's Charter states that I had the right to be given a clear explanation of any treatment proposed including any risks and any alternatives, before I decide whether I will agree to the treatment.
This did not happen. I was told that I should have a total abdominal hysterectomy and when I was not too pleased asked "Why would I want a fibroid womb" as if it was something of no importance or value. The risks of hysterectomy were not mentioned and when I mentioned myomectomy, an operation performed over a century ago, it was sneeringly dismissed as "no good. They (fibroids) only come back". This does not accord with Monaghan's assertion that the results of myomectomy are
"excellent" but fits in very well with a picture of a male dominated profession, willing to offer conservative surgery only to women whose owners want to breed from them. If you think I sound cross - you're dead right. Hell had no fury like a woman scorned and I feel that my reproductive system has been well and truly scorned.
The male chauvinist attitude is so pervasive that some women accept the male view of their organs and unquestioningly agree to their mutilation. I should like all women with fibroids to know that conservative treatment IS possible "in almost every patient". All they have to do is dump their hysterectomist and find an experienced restorative surgeon - which they will probably find a difficult exercise.
Yours sincerely
Pamela Nomark
I was quite surprised to receive a letter not from the charity I had written to but from a woman with a Harley Street address. She wrote.
Dear Ms Nomark
Your letter to Women's Health Concern has been passed on to me and I am most grateful to you for letting us have your views and the enclosures.
As regards your own problems, if you feel that you need treatment, I am sure that you should ask your G.P. if he would refer you to a woman gynaecologist, who would be able to give you an unbiased view on the treatment you need.
Yours sincerely
A Bounce
Well, Dr Robert Mendelsohn has this to say about women physicians, "female doctors did go to the same medical schools as male doctors. They had to employ the same artifices and devices to compete and survive. They were influenced by the same ridiculous and dangerous dogma. Consequently, most of them emerged from medical school and hospital residencies brainwashed to practice medicine very much as though they were men."
On 22 May I wrote and told her about the "unbiased" views I had had from two female hysterectomists.
Dear Ms Bounce
Thank you for your note of the 29 April. However I have to tell you that I have already seen 2 female gynaecologists and am not at all happy with either of them.
When the big lump was discovered last year I was sent by my GP to "the consultant gynaecologist" at the local hospital. This was Mrs Languid, whom I left in no doubt of my extremely negative feelings about female mutilation. As I have mentioned before, when I went back to see her I was told by a male chauvinist pig that I had to have a total abdominal hysterectomy and to come back when I had decided to be chopped. I enclose a copy of his letter to my GP. I also enclose Mrs Languid's letter to Dr Curry. She is "not happy" with the idea of attempting a myomectomy - the operation described as "frequently performed" and "well within the expertise of most of our members" by the honorary secretary of the RCOG. What sort of profession is it where consultants are unhappy with basic conservative surgery, practised for over a century?
I don't know what her understanding of trying to shrink fibroids is but I read the following on it:-
And I told her about what I knew about GnRH-a.
I changed to a female GP last spring. When I first saw her she extolled the great advantages of hysterectomy. After all being over the hill (44) I'd better start thinking about my HRT! Like Edwina Curry, I am not at all convinced about the advisability of medicalising women's lives and Kakukoba's latest on implant HRT seems to illustrate some of the difficulties involved. She referred me to Ms Godly. I enclose a copy of her letter. It sounds to me as if she is telling Ms Godly. "We want a second opinion only. Just tell the silly cow that a hysterectomy is the best way to treat a woman".
I was most unimpressed by Ms Godly, who didn't even have a definite diagnosis, a situation I do not regard as satisfactory. She was also denigrating myomectomy and obviously trying to railroad me into agreeing to a hysterectomy. I had already given Dr Curry a six page letter regarding hysterectomy - if she had actually read it she was patently determined to ignore my opinions and preferences. She never personally examined me and was making surgical judgements upon the basis of a brief examination by Curry a month previously and a 19 word ultrasound report upon whose content, by her own letter, she relied not a whit. She was apparently unwilling to undertake any investigation - an adequate ultrasound, nuclear magnetic imaging, hysterosalpingography or hysteroscopy which could have provided a definite diagnosis at the very least and may have given valuable operative information. I would also have thought for a uterus of my size GnRH-a therapy should have been considered advisable for conservative surgery to reduce operative bleeding, if not myoma size.
And I quoted what I had found out about my ultrasound and solid ovarian masses, commented on the fact that all the medics I had seen agreed that I needed a "laparotomy", and related the delay in being referred to the professor.
I have found the female section of the medical profession just as keen, if not keener, on mutilating patients. However there is a female doctor whose book "No More Hysterectomies" leaves no doubts as to her attitude to female amputation. She records taking 4 hours picking out over 100 myomata. Unfortunately Dr Hufnagel, who has performed over 400 "reconstructions", lives in LA and charges ?20,000+ per patient. The National Hysterectomy Service can routinely mutilate women for ?1,100 each. Is this why hysterectomy is so popular? It's the cheap way to deal with any female complaint going. Interestingly TCER, which IS becoming popular with the NHS is, at ?350 a go, an even cheaper way of dealing with women. Are women getting endometrial resection not because it avoids unpleasant mutilation which is known to have numerous adverse effects, but because it's cheap? Is the treatment of women determined by cost and is this why myomectomy is not favoured and why preoperative investigations are not done? Why bother when your're only going to rip everything out anyway?
I wrote about hysterectomy to a female GP who produces leaflets for a local health group and is considered by my sister to be "right on". I enclose a copy of her reply.
How strange that the unbiased female medical view is that hysterectomy is the best thing that can happen to a woman. The fact that the only individual who apparently takes my objections to mutilation seriously is a male I find exceedingly depressing. However as his address is on the Research floor perhaps he's merely interested in large myoma and he regards me as another interesting specimen to add to his collection.
If you have any explanations or comments on my medical non treatment to date I would be interested to hear them. I should be especially interested to know why I should have a laparotomy and why I shouldn't have any preoperative investigation. And why nobody has made even the slightest attempt to medically treat either my menorrhagia or anaemia. I bought iron tablets from Boots and have had neither prescription nor advice on anaemia treatment.
I found this in VR Tindall's edition of Jeffcoate's book:-
"The older woman with multiple fibroids who has been nursed though pregnancy can be best treated by caesarian hysterectomy at term."
Dr Amicable has gone on maternity leave with multiple myomas showing on her scan. Do you think she will be following Sir Norman's advice? Will she take her own prescription?
Yours sincerely
P Nomark
Ms Bounce made no comment upon my medical mistreatment. Her note, even briefer than the first, said.
Dear Ms Nomark
Thank you for your letter and enclosures.
I am glad you are being referred to Professor Tizzy and send you my best wishes for a happy outcome.
Yours sincerely
A A Bounce
No doubt she has to save her energies for her paying, private, patients. I really don't understand why she even made the pretence of responding to my letters. Or how she got my letter in the first place. I expected to get a reply from another fuzzy volunteer at the charity I wrote to not from a participant in the hysterectomy business.
I couldn't help wondering if she used the charity as a supplier of wombs for amputation in the slack season.
The WHC's leaflet on endometrial ablation starts by saying that many women still chose to suffer heavy and sometimes painful periods because they are afraid that that their doctor would want then hysterectomised1. I was glad to hear that other women did not regard man's favourite mutilation with the the sort of casual acceptance the medical profession prefers. But these misgivings are cheerfully dismissed by the WHC, whose leaflet on hysterectomy assures women that they will feel nothing but relief after they have beeen relieved of their unpleasant and annoying womb.
Loss of sex drive is attributed to the patient's bad attitude, depression is just a little mourning period and any menopausal problems will be put right by good old HRT. And a few foolish "old wives' tales" are trotted out as Aunt Sallys to be knocked down by our caring, efficient medical service.
The WHC warns that all hysterectomies for heavy bleeding cannot be replaced by endometrial ablation - this is "dangerous thinking". However in 1992 Wood wrote that the majority of women with heavy bleeding, even those with fibroids and adenomyosis, could be treated with resection and Lomano found endometrial ablation effective even with fibroids or enlarged wombs. When
Rutherford assessed 375 hysterectomies performed in Leeds between January and June 1988 he found that 85 of the 186 wombs excised because of "excessive bleeding" appeared normal and that 108 women, nearly a third of the total would have been suitable for endometrial resection. As the 78 considered unsuitable because of large or multiple fibroids could have been offered a myomectomy over half of the total number of hysterectomies could have been avoided. And of course up to 60% of heavy bleeders are not even bleeding heavily when they are scientifically assessed.
The WHC also remarks on misleading information in magazines, newspapers, radio and television programs. Funny I usually found the media quite accurate, if rather short on detail. The most misleading item I ever read was Giangrande's insistance that myomectomy "is usually attempted" - a statement written by gynaecologists and approved by the Royal Society of Medicine in spite of the fact that every gynaecology textbook written labels this a lie.
I was later told that Women's Health Concern was set up in 1972 under the name of Women's Health Care with backing from the drug company, Ayrst, to promote HRT. As hysterectomy is associated with ovarian failure which is most easily treated with HRT I suppose it makes sense to promote mutilation and castration as well.
The third woman's group I wrote to, on 2 April 1993, was called the Woman's Health Information and Support Centre Ltd.
Dear Reader
Some time ago I telephoned the WHISC as my sister had told me that a medic associated with you was sympathetic to women's problems. I wrote to Dr Goode about my fibroid womb condition but found her reply unhelpful to say the least.
I enclosed my list of references on hysterectomy.
I remain convinced that the preference shown by medics for female amputation is due to surgical convenience and contempt for female organs.
If you know different please enlighten me.
I enclose copies of two letters I received after writing to the Royal Society of Obstetricians and Gynaecologists. One asserts that myomectomy is "well within the expertise" of most of their members (something I have doubts about) and the other states that he has performed myomectomies on women who have been offered only hysterectomy. If any fibroid female comes to you unhappy about being mutilated you know where to send them.
I also enclose some sheets about endometrial resection. Any women threatened with hysterectomy because of heavy bleeding could be referred to one of the centres that do resection. They don't have to play roulette in the study if they know that they want resection only.
According to the Osteoporosis Society leaflet on hysterectomy and HRT (very interesting - do you have a copy) fibroids and abnormal bleeding together account for 75% of hysterectomy cases. The Society apparently regards being able to get HRT from your GP as one advantage of being castrated - a rather high price to pay for your cheap horse oestrogens I would have thought.
Yours sincerely
Pamela Nomark
The reply was dated 17 May.
Dear Ms Nomark
Thank you for your letter and the information that you sent to us. As an information and support centre we aim to gather and disseminate as much information as we are able to. But also as a voluntary agency we greatly appreciate research, information and personal experiences which women are able to share with us.
I was sorry to hear of the difficulties you have encountered in your dealings with the medical profession. You may be aware that Mr Roy Farley offers the TCER procedure at the Women's Hospital and has recently been conducting some research into its effectiveness, information enclosed.
I sincerely hope you are able to find the appropriate management for your complaint and we would be pleased to hear of any treatment and or alternative treatment which you find helpful.
If you would find it helpful to talk through your experiences please call into WHISC during "drop in" hours.
With kind regards,
Ms Jelly
I wrote back on 23 May 1993.
Dear Ms Jelly
Thank you for your letter of 17 May. I have read much about fibroids and hysterectomy since finding that I had a 23 week pelvic mass.
Briefly what I have found is that most women with fibroids appear to be routinely mutilated with no attempt to preserve the womb in spite of the fact that this is possible in "almost every case". What I should like to know is whether these women are truthfully told that conservation is possible though there is a 10% chance of later fibroid growth requiring another operation, and the NHS won't do 2 myomectomies (they seem extremely reluctant to do 1, though women who pay for their medical treatment have had multiple myomectomies).
I related much of my experiences with the hysterectomists and finished:-
So the question remains is my treatment exceptional or standard? Fibroids are a very common occurrence with 20,000+ women mutilated every year with them. WHISC must have come into contact with many other women with this problem. What are they told by their medical advisors? Do they choose to risk the adverse effects of hysterectomy? Or are they in fact not given the choice. Never offered conservative surgery. Or sneeringly told that it is "no good " and that fibroids "only come back" as I was? Told that removal of the womb has "no adverse effects"? Medical textbooks and journals have nothing to say on this subject. Can you tell me anything?
For interest I enclose a copy of the very long letter I wrote to Dr Goode and her reply.
I also enclosed copies of a couple of articles I thought interesting.
Gupta and Mahomed record in the Br J Obs Gyn a Zimbabwe women who had abdominal enlargement over 15 years due to a 33.9 lb fibroid uterus. She had some abdominal discomfort and menorrhagia though with a haemoglobin of 10.4 g/dl she was less anaemic than I was (8.8 g/dl). She had no urinary or gut problems and was generally quite well.
I note that Slade's patients were all "keen to avoid a hysterectomy" but presumably none were offered a myomectomy, in spite of the fact that the older woman is less likely to have fibroid recurrence (because she has fewer menstrual years left and fibroids are essentially a problem of menstruating women). Moreover two thirds of women with fibroids have no problems with them. This accords with the fact that although fibroids recur in 30% of myomectomy patients only 10% undergo hysterectomy.
Finally I enclose some medline abstracts. I find it interesting that the German Semm is apparently enucleating the cervix to maintain sexual sensations of the patient which medics have persistently denied that they have.
Marut in the Obs and Gyn survey states:-
"The performance of a hysterectomy is usually the simplest means of treating uterine myomata. However, while it is appropriate
for symptomatic disease and rapidly growing or very large myomata in women no longer desirous of reproduction, it is not necessarily appropriate for women who wish to preserve their fertility or even simply preserve their uterus."
Can you tell me that 20,000+ women a year lose their wombs because they don't wish to keep them? Or are they routinely fixed, without consideration of their wishes, because it's the simplest (and cheapest) way of dealing with their complaint? What has been your experience in this matter? I would really like to know.
Yours sincerely
P Nomark
I wrote again on 2 July.
Dear Ms
I left a poster from the Hysterectomy Network with you last week and enclose a leaflet of theirs, one of their newsletters and another letter.
I am not impressed with them as they seem to be weeping victims and I want to attack people (gynaecologists mainly but medics in general). However they do send a contact list if you join them and it can be interesting to hear from other sufferers of the National Hysterectomy Service. I attach a list of the local numbers.
I wrote to Ms Jelly at your address on 23 May and have so far received no response. If she has no information for me about what women are told about myomectomy or the consequences of hysterectomy I should appreciate a note to that effect.
I went on about Dr Goldfarb's book and said:-
Would you say that these quotes would indicate that a female of my age should be told that of course I don't need a hysterectomy - a myomectomy will do just as well. And since nothing of the sort happened that the hackers of the NHS are both uncaring and inaccurate (politetalk for lying bastards)? Answers as long or as short as you like to the above address please.
Yours sincerely
Pamela Nomark
Ms Jelly replied on 13 July.
Dear Ms Nomark
Thank you for your letter of 23rd May and 2nd July and the additional information you have sent us.
I was sorry to hear of your unsatisfactory experience and the consequences to your health.
In answer to the questions that you raise in relation to other womens experiences I can only offer you a few comments that have been relayed to us, because as an organisation we do not question women's experiences and we do not keep detailed records.
However, for more detailed information and possible statistics Women's Health may be able to offer this to you.2
May I also suggest a meeting if convenient to you, on Tuesday 20th July from 3pm to 4pm at WHISC's drop-in premises between yourself and I. Please let me know if this is not a good time for you and I will try to make another date and time.
Yours sincerely
K Jelly
Ms Jelly had no information for me but suggested that I write up my experiences. It was to be a short resume of my encounters with the "health" service and what I had found about fibroids. In the end it ran to 14 pages.
But some things it never even mentioned.
The last note I had from the WHISC, on 20 September, said that they were planning a training day for their volunteers based on my experiences.
During that summer I also got in contact with a Well Woman Centre over the water. First I telephoned and then on 18 June 1993 I wrote to the
Community Health Projects Manager.
Dear Ms Henry
I enclose a copy of what I read about myomectomy and hysterectomy, some medline abstracts and some stuff from HERS including the text of their hysterectomy and castration leaflet, which is difficult to photocopy. I sent a couple of items to the Hysterectomy Network, including a lengthy questionnaire on the negative effects of their hysterectomy. They ask if amputees have suffered from anything from loss of orgasm to ingrowing toenails.
I have written to a few people over the last 9 months, mainly authors of medical books or articles.
And I gave a list.
As I mentioned I wrote to the doctor who looked at the ultrasound. She
didn't write directly but replied through the hospital and I enclose a copy of the letter. I decided to take Mr Yates advice and wrote to Ms Godly. Perhaps she will explain everything.
I think I may be rather harsh with Amicable - she always comes over as an inoffensive unassertive sheep. Although I have written several letters to her she has answered none of my questions (because she can't in my opinion) and seems quite convinced that what I need is fixing. I enclose her letter to Godly. I was very unchristianly happy (but then I AM an atheist) gloating over Jeffcoate's treatment for pregnant females with multiple fibroids.
I complained about the GP I had been going to for 18 years and the FHSA decided that he was white as snow. I enclose my medical history as I remember it with some quotes from what he wrote to the FHSA.
By the way I am not assertive at all, being very introverted and lacking in self confidence but can be extremely stubborn when pushed.
What I need is logical criticism and analysis of the facts and my interpretation of them.
Yours sincerely
Pamela Nomark
It later occurred to me that Dr Amicable was more of a Judas Goat than an inoffensive sheep.
I wrote to Ms Henry again on 29 June.
Dear Ms Henry
I started by quoting extensively from Dr Goldfarb, wrote about GnRH-a and finished with:-
CONCLUSION
Besides considerable operative risks hysterectomy is associated with serious physical and mental health risks.
As far as I'm aware these are associated with uterine amputation and are avoided with myomectomy. Logically it may be possible that ANY pelvic surgery, such as caesarian section (about 50,000 a year), may be associated with ovarian damage. I have seen no information on this subject.
Performed by a competent surgeon using GnRH-a therapy myomectomy should be associated with a low risk of serious bleeding, no large increase in operative time and for the older woman a low risk of fibroid recurrence.
Logically myomectomy should be the "operation of choice" for the older woman. The fact that it is not I ascribe to contempt for female organs on the part of the medical profession combined with a disinclination to
perform anything other than the most basic, cheapest, simplest surgery possible.
This is what annoys me. The idea that my reproductive system is thrown on the scrapheap by a bunch of male chauvinist pigs and their allegedly female lackeys and nobody will give me the slightest fragment of
justification for this obscenity. They are PAID by the NHS for their services. Dr Goldfarb thinks they should work FOR the patient and not ON them, treating them as ignorant scalpel fodder. I wouldn't trust any of them as far as I could throw them.
I realised how things were going last July when I went to see Dr Curry and he suggested sending off for the ultrasound result done 4 months previously. In her book "Natural Healing in Gynaecology" Rina Nissim states that her patients experienced "improvement" with herbalism. So I looked in the yellow pages and started going to a herbalist. I have been taking the herbal medicine for nearly a year now and I don't think it's made any impression on either my bleeding or the mass. But at least I'm sure she's interested in trying to reduce or at least control the mass. And that's something I didn't find with the hysterectomists of the NHS, who wouldn't even try any investigation to determine exactly what the mass was. Who don't want to monitor the mass, try medical management or in fact do anything except rip you open and tear your insides out. And drop you like a hot brick when you say you're not keen on mutilation.
No wonder alternative medicine is becoming so popular.
Yours sincerely
Pamela Nomark
When I telephoned her Ms Henry agreed that medics treated women appallingly, but then who doesn't? She had a meeting to go to. She always seemed to have a meeting to go to. I wrote to her last on 12 August 1993.
Dear Ms Henry
I telephoned 3 times on 21 July, as you suggested, but got through to an answering machine only. And I hate talking to machines.
I was quite surprised to find that myomectomies are indeed performed in England - as long as you're less than 30 years old - and enclose a copy of the article I saw about them.
As I have already said I have written to a couple of GPs, half a dozen gynaecologists, Women's Health, Women's Health Concern, the Hysterectomy Support Network, WHISC, HERS, Watchdog and yourself. Many have not even replied. Those that have usually tout hysterectomy as being a marvellous solution to "womens problems" or know somewhere from little to nothing about the whole subject.
I am particularly surprised at the complete absence of any information on what fibroid females think about being routinely mutilated, considering that so many are done each year. Are they really happy to lose their wombs? Is Dr Goldfarb mistaken in his assertion that 8 out of 10 women want to keep their wombs? Or are they told that there is no alternative? Though this would, of course, be an outright lie, from my own experience I believe that this is exactly what usually happens.
I feel right pissed off by the fact that I NEVER get any answers to any of my questions. Medline is the only thing that will respond to interrogation. Thank goodness for computers.
WHISC suggested that I write up my experiences with the NHS, which I have done. They think it may be useful as a case study for volunteers. If you would like to use it for the same purpose I enclose a copy.
Yours sincerely
P Nomark
I never received so much as a note from Ms Henry.
1 An entirely correct assumption since Coulter et al showed that 60% of women referred to outpatients with heavy bleeding were mutilated within 5 years.
2 Fat chance!
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chapter 13