14 The Network

"When she was told she needed a hysterectomy she and I researched all the popular literature we could find. According to that, it was a surgery with no particular aftereffects, no more than having one's appendix out. But a friend who works in the medical school library in the city where we live helped me research the actual medical facts. After that Mary and I together made the decision that she would not have the surgery. The operation had been prescribed for a uterine fibroid tumour. That was 2 years ago and Mary's tumor hasn't grown at all. Not only does Mary feel great, she's expecting our first child in 2 months."
Bruce K in The Castrated Woman: What your Doctor Won't Tell You About Hysterectomy by Naomi Stokes

I decided to try and find as much as possible on how women with female complaints were treated and wrote to the Hysterectomy Network in June 1992. I was sent a leaflet on fibroids written by their founder and, as the membership fee was reduced for the unemployed, decided to join and see if I could get any useful information. I was given the telephone number of a woman in Staffordshire who had had a large growth. When I phoned her she told me that she had an emergency hysterectomy because of a melon-sized growth which was not fibroids. I wondered what on earth it could have been.
On 10 Jan 1993 I wrote to the founder of the Hysterectomy Network.

Dear Ms

I am 44 years old and since I was found to have a 23 week pelvic mass, presumably fibroids, I have been reading up on fibroids and have come across what I can only regard as anomalies. As a writer on hysterectomy and founder of the Network you appear to be more qualified than most to explain the true situation with regard to what I regard as a hideous mutilation. From what I have read, it would seen from the appended quotes:-
A) myomectomy is possible in almost every case of fibroids.
B) hysterectomy is performed as "the operation of choice" in almost every case.
C) the patient is not given a surgical choice and is not told about the considerable adverse effects of hysterectomy.
d) hysterectomy is favoured and fibroids trivialised by the medical profession.
After an ultrasound scan, which showed only that there was a large mass, still only presumed to be fibroids, I was told that I should have a total abdominal hysterectomy and to come back when I was willing to sign for the chop. The hacker couldn't say how many fibroids I had, what type they were, what condition they were in, or even if the mass WAS fibroid(s).
It would seem that the most a woman can expect from the NHS is a laparotomy or "slash and see", with no attempt at definite diagnosis and a pervasive disinclination for anything but destructive surgery. I should like to know why my organs are regarded as unworthy of any attempt at conservation and only of use for bearing children for men.
Is it true that women are mutilated because of male chauvinism or are there good reasons for hysterectomy. If these reasons exist I would like to hear what they are. I cannot find them in the literature.

Yours sincerely
P Nomark

She had retired. I rang one of the contacts who advised me to write to the newsletter editor. I later found that she had given up replying to letters but my letter had been passed on and some time later I received a reply from the Network.

Dear Pamela

Once again your letter has been passed on to me, so I will try to answer it as best I can.
Firstly I must add that we at the Network do not offer advice based on medical knowledge, it is based purely on experience, as I cannot offer any medical advice to you. So you will probably find my reply most unhelpful.
I have read all the paper work you have sent to me and the articles which I am grateful for. The ones on endometrial ablation will be a great help as I receive many enquiries regarding this procedure.
To be honest, I do not think I can offer any more than you have been offered in the letters from various doctors and gynaecologists. The most important issue here, is that it all boils down to choice and the choice has to be yours and yours only. As long as you are aware of the pros and cons, then you should be able to make the right decision.
It is true that a hysterectomy is performed for a fibroid uterus is the woman if past childbearing or has no wish to have children. This is usually because the hysterectomy is seen as the easiest option, as it takes away the problem and prevents the return of fibroids which is a factor to be considered. Most women, like yourself have a choice and are quite happy to have a hysterectomy and resume normal life.
In your case you seem to feel that a hysterectomy is not for you, that is your choice and you are right to stick by that decision. Provided the fibroids are not causing you too much discomfort or bleeding and you can cope with the condition, then that's fine. It is important though, to get checked regularly to observe for an increase in fibroid size which may cause problems such as pressure on the bladder causing frequency of urination and increased abdominal size which although isn't a problem in itself, would obviously cause distress to some women. If you feel that you only want a myomectomy, then tell your gynaecologist and he may consider it. If you want to be left alone, then tell him that too just as long as you are aware of the problems which can arise. I believe you are aware, as all the enclosed letters from doctors have stated the problems which can arise from untreated fibroids.
I do not think your attitude is at all abrasive, I do not think you are unreasonably attached to your reproductive system. I do not understand though, why you refer the gynaecologists as "hackers". Maybe some gynaecologists do offer hysterectomy when the indication for one is not always warranted, but then it is also important for the doctor to look at the patients life as well as the gynaecologists decision. It may be that the patient will benefit from a hysterectomy as her home life is being badly affected, she may have been to see her doctor so many times, that hysterectomy is the best answer in this case. Then if the patient is happy and the doctor prepared to do the surgery, that is one good case solved. In your case you obviously see the prospect of surgery as unnecessary and an invasion, therefore, it is your choice to say no.
I do not feel that gynaecologists are "male chauvinist pigs" who just want to cut a woman at the drop of a hat, after all it is these gynaecologists who developed procedures such as TCRE and laparoscopic hysterectomy. Both these are time consuming and more difficult than a hysterectomy which is obviously now a very routine procedure and can take as little as 30 minutes to perform. So the new procedures developed are obviously done with women's needs in mind. The new procedures require extra training and finance and in these days when hospitals all over the country are starved of cash, this takes not only persistence, but dedication.
In my opinion there has been quite a turnabout in the way "women's problems" are treated, a hysterectomy is not always performed at the drop of a hat, other alternatives including drug therapy is considered first and a hysterectomy is seen as a final option.
Most of the women I have had contact with are happy to have their hysterectomy as it solves the problems they have been suffering, then again I also receive letters from women who feel that the emotional trauma they have suffered at the expense of a hysterectomy has had a worse effect than the fibroids themselves. It has to be weighed up very carefully and the choice can only be decided by the woman, looking at the fors and againsts. You, Pamela are obviously very well informed and can therefore make a good decision which is right for you. Only you can make the choice, you obviously feel very strongly about this and you are right to say no if you feel that the outcome would be detrimental to your well being, just have regular check ups to ensure that you do not develop other problems as stated in your letters. Hopefully when you have your menopause, the problem will resolve itself.
As I said at the beginning of this letter, this is only my opinion and not based on medical knowledge.
If you wish to discuss this subject further, write to me at the above address, as all letters to the main address are passed on to me anyway. I do not feel I can add anything other than I have written here, but if you have any specific questions, then don't hesitate to write.
I have enclosed our fibroid fact sheet for you, not to educate you further, as you obviously don't need that, but I thought you might find it interesting. Thanks again for the literature you sent, if you find anything else which may be of interest to us, we are always grateful for articles sent.

Yours faithfully
Sheila Lotus (Mrs)

I wrote back on 31 March 1993.

Dear Mrs Lotus

Literature
I wrote to the HERS Foundation mentioned in the October issue of the Network newsletter and they sent me quite a lot of papers, some of it old stock. I am forwarding some of them along with copies of most of the rest. I hope some of it is of use. They seem to have an impressive list of articles for sale. Perhaps HERS could advise the Network on setting up their own articles list. I thought it interesting that Mrs Coffey has the same negative view of hysterectomy (though with more reason since she is a victim herself) and its perpetrators as myself. The hysterectomy and castration leaflet mentions the many negative effects of hysterectomy ignored by the medics.
I also include a couple of pages from a booklet on hysterectomy and hormone replacement therapy published by the Osteoporosis Society, who are concerned by the well established link between hysterectomy and brittle bones. Just so you know how dangerous brittle bones are they sent a leaflet about it. Get your bleeding sorted out and die painfully twenty years later with crumbling bones. But never fear HRT is the answer to your iatrogenic disease - maybe. Apart from its unquestioning acceptance of the mutilation as necessary (even though it quotes research that shows that the number of operations done is related more to the availability of hackers, beds, social outlook etc than medical necessity) it seems an up-to-date, well written, informative booklet and I would recommend the Network get one, if they have not already done so. It is available for Ł2 and a s.a.e. from the Osteoporosis Society, P O Box 10, Barton Meade House, Radstock, Bath, BA3 3YB.

Medical Choices
I can see that hysterectomy is the easiest choice for the hacker. But is it best for the woman involved? Should medical decisions be made on the basis of what is best for the medical men and medical system with no regard for the feelings and wishes of the patient?
Did you see the case of Caroline on "The Pulse" on 17 March. She said she definitely did not want a hysterectomy and would have an endometrial resection. She woke up with no reproductive system left. Her hacker had removed the lot because he said the womb had a lump in it (fibroids are so common there must be few older wombs without a lump or two). There was no cancer present and both ovaries were normal. No permission had been given for hysterectomy. There was no medical emergency. The Director of Public Prosecutions is considering a charge of criminal assault. Caroline is now plunged into the menopause and feels herself to be a "eunuch" - which of course she now is.
What I am so irate about is that women are not told about the many and very real dangers that hysterectomy can bring and that as far as fibroids are concerned myomectomy is possible IN ALMOST EVERY CASE. From my own experience and from what I have read I believe women are routinely fixed for the convenience of the medical profession and never consulted about what is being done to them. It's the lack of consultation or consideration that really bugs me. I hate being treated like a carcase at the abattoir.
I enclose a copy of the letter sent by a chauvinist pig to my GP. He states quite categorically that he would love to butcher me. He also said that "myomectomy was no good. They only come back" and obviously felt that the best way to treat a woman was to mutilate her. I also enclose an annotated copy of the letter my GP sent to the next would-be mutilator I saw and a copy of the letter the first mutilator sent to the second's assistant. I find it very interesting that a consultant is apparently saying that after years of practice and training (presumably in destructive surgery only) she is not competent to perform basic conservative surgery. How is a woman to keep her organs when gynaecologists will never mention conservative surgery to them and can perform amputation only? Note also that for refusing to meekly accept butchery I am labelled "difficult".
I think that the most depressing aspect of the whole miserable affair is that both the consultants I saw were female. Apparently after clawing up to the top of the medical heap any sensitivity or sense of female identification is totally eroded.

New Procedures
I am alarmed to hear that hysterectomy can be done in 30 minutes. Nezhat et al (J Reprod Med 1992 March 37 (3) 247-50) gives an average time of 102 minutes and the "Principles and Practice of Clinical Gynecology" by Weingold, Kase and Gershenson says:-
"The statement that anyone operating in the pelvis should have a thorough understanding of pelvic anatomy seems so obvious that it should not require mentioning, yet few gynecologic surgeons are truly comfortable with the pelvic course of the ureters, pelvic vasculature or blood supply of the sigmoid colon.
The sad fact is underscored by the Mayo Clinic experience in repairing more than 500 urologic fistulae after gynecologic procedures. One-half of these injuries occurred in what would be described as routine hysterectomy, that is situations without significant adhesions or anatomical aberration...
The idea that what you can't see won't hurt is clearly dangerous and should be replaced with the philosophy that what you can see you can avoid injuring."
No wonder there's so many injuries if women are being rushed through at one third the average time.
I admit not ALL gynaecologists could be totally chauvinist pigs - a few, a very few, seem genuinely concerned for their patients. However I think that many perform less destructive surgery - such as endometrial resection - more because they prefer a professional challenge and the chance to play with new technological toys rather than out of any consideration for the patient. There is a fat living, but few laurels, for the routine hysterectomist. Moreover although the new techniques require equipment and training hospitalization time is much reduced and the cost per patient thus reduced. Many articles emphasise the economy of endometrial ablation. One in the Nursing Times in February 1990 gives the cost of ablation at Ł350 while a hysterectomy costs Ł1,200. If the NHS ever encourages ablation rather than hysterectomy I believe it will be thinking primarily of its budget.
However as myomectomy is as invasive as hysterectomy there are no savings to be made in performing this less destructive procedure. Myomectomy also usually takes longer - though at an average 120 to the 102 minutes taken for hysterectomy not a great deal longer.
Laparoscopic hysterectomy also increases turnover by emptying beds faster. Laparoscopic myomectomy oddly enough has been reported as taking LESS time on average than laparoscopic hysterectomy - 116 compared to 160 minutes.

Experience
I have found reading up on what textbooks and journals say about fibroids very interesting but I have had no knowledge of what is actually told to the woman involved. You say that most women have a choice. I would say from the way I was treated the choice was like it or lump it. I was not informed about myomectomy. I am quite sure that it would not have been mentioned to me. I was offered only total abdominal hysterectomy - even though I had made it perfectly plain that this was as palatable to me as a cup of cold poison. I was told that "myomectomy was no good" and told to come back when I had changed my mind and agreed to be mutilated. In short after getting a "fairly urgent appointment" with the newly appointed gynaecologist at the local hospital I was dropped like a hot potato when I refused mutilation - no alternatives offered, no drug treatment offered, no investigations, no monitoring of lump growth, no referral to a more competent gynaecologist - not even advice on treatment for my anaemia. I bought my own iron tablets from Boots and decided on the dose myself. Moreover, as I have written on the enclosed letters, it seems to me that the consultant I saw - and presumably many others - was not confident, and presumably not practised (I wonder why) at conservative surgery. Can you tell me if my experience of the NHS is usual? Are all women told what they're having - whether they like it or not? And if they don't like it tough luck!
I do not regard consultants as gods but many people, especially women, seem to. What do most women do if told by one of the gods that she "has to have" a hysterectomy? I went home and wept buckets and I didn't regard this pig as anything like divine.
I wrote briefly to the Royal College of Obstetricians and Gynaecologists about myomectomy and enclose a copy of their reply. I was astounded to hear that myomectomy is "frequently performed" and "well within the expertise " of most of their members. As Prof Tizzy's letter makes clear many women are 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 would like to know what, if anything, about myomectomy is said to other fibroid wombs. And what, if anything, is said about the possible effects of hysterectomy. Do you have any information about this?
I found this in the "Principles and Practice of Clinical Gynaecology" by Weingold, Kase and Gershenson:-
"Once all diagnostic studies have been performed, the patient should be informed as completely as possible about the nature of her illness and the contemplated surgical procedure, including a forthright discussion of indications, risks, postoperative effects, and alternative therapies. This discussion serves two purposes. For the patient, it provides an understanding of her disease, the opportunity to ask questions, and the ability to participate in decision making about her own health, all of which greatly improve rapport and patient confidence. For the physician, this discussion helps crystallise a clear organized plan of action for each situation that might occur at surgery. We are convinced that even the worst possibilities should be broached pre-operatively."
Now this gynaecologist I might like. Would you say that this is the usual experience of gynaecology patients in England?

Yours sincerely
P Nomark

I telephoned a few of the contacts on the Network List. One of them was a nurse who had not had the operation and said that where she worked (in Chesterfield) any woman who preferred a myomectomy got one - just like that. I wrote to her on 10 May 1993.

Dear Mrs Queen

I telephoned some time ago and talked about fibroids and related subjects.
(I enclosed my usual list of medical references including the HERS leaflet and continued.)
Finally I enclose some of my annotated medical records and would like your opinion of my conclusions from them. I note that for not wanting to be butchered both my GP and the hysterectomists I saw labelled me difficult - it's unreasonable behaviour for an old hag of 40+ to want to retain her reproductive system when hysterectomy is widely applauded in the male dominated, male chauvinist, medical profession as the only way to treat a woman - whatever's wrong with her.
(I mentioned Caroline's case again.)
I have become convinced that the preference shown by medics for female amputation is due to surgical convenience and medical contempt for female organs. Could you image a man waking up from an operation on his tubes to find that not only had his lumpy prostate been removed but his gonads taken as well? Male tissues get more respectful treatment even though the death rate from prostate cancer is twice that of ovarian cancer.
The general attitude is that hysterectomy is the best treatment for any female complaint and you either like it or you're dropped like a hot brick without the slightest attempt at any conservative treatment whatsoever. I'm sure most women find this extremely alarming and meekly agree to the hysterectomist's demand to mutilate them - "for their own good" of course. I wrote the following to my GP:-
"It reminds me unpleasantly of many rape accounts where the victim is not only sexually abused (and if amputation is not the most extreme form of sexual abuse what is?) but is often coerced into saying that they like it really."
Personally after seeing the second hysterectomists assistant in July last year I was so negatively impressed that I went to see a herbalist. When I saw the God herself I was not surprised at her "what you need is a hysterectomy" attitude and chose to continue taking the herbal medicine. It has not reduced the lump but at least I am not subject to pressure to get mutilated.
As the Patients Charter states that a patient is supposed to be informed about any alternative to the proposed treatment why wasn't I? As myomectomy has been around for over a century and is "well within the reach" of most of the RCOG members it could hardly be denied that it is an alternative for "almost all patients".
I have written to a number of gynaecologists about fibroids, hysterectomy and myomectomy but the few replies are what I would call "evasive condescending claptrap". They gave no evidence at all for the alleged superiority of hysterectomy and I didn't have to look far to find the risks - the latest of which is the suggestion that hysterectomy predisposes one to development of a colovaginal fistula after colorectal surgery! Although any individual is unlikely to suffer all, or even many, of hysterectomy's deleterious effects the range and frequency of them seems considerable - or does all surgery come with a similar plethora of unwelcome sequelae?

I repeated the account I had written to Mrs Lotus of my treatment by the NHS here, finishing with the question of whether it was the usual female experience.

Another strange anomaly is the ultrasound "report" - all 19 words of it. It states that my ovaries appeared normal and yet Jack Ketch wrote that "no ovarian masses were seen", and both Dr Curry and Dr Godly stated that they wouldn't rely on ultrasound identification so I wrote to the radiologist mentioning:-

And I reproduced my letter to Dr F.

I have so far received no reply.
I enclose a few other Medline abstracts.
I have written to others, including Mrs Lotus of the Network, but all I get is the usual condescending claptrap. I didn't realise there were so many bullshiters about. If you have any actual information I would like to hear it because so far I'm getting the distinct impression that I was perfectly correct in my early conclusion that the medical profession hates women and is doing its best to mutilate as many as possible.

Yours sincerely
P Nomark

She did not reply and her name vanished from the next update of the Network contact list. I wondered why. I wrote again to Mrs Lotus on 16 June.

Dear Mrs Lotus

I hope you have not been unwell. I was quite surprised not to receive a reply to my letter of 31 March. I hope it did not go astray as I sent quite a few papers with it.
To repeat my query I would like to know what, if anything, about myomectomy is said to other fibroid wombs. And what, if anything, is said to prospective victims about the many possible adverse effects of hysterectomy with which you are, of course, well acquainted. With 20,000 mutilations a year done because of fibroids which can be removed alone an "almost all cases" you must surely have some information on this subject.
I enclose a copy of the Nursing Times article mentioned in my letter. I was sent this by a Womans Health Group in Liverpool. They also told me that endometrial resection is now being done at the Womans Hospital, Liverpool by Mr R G Farquharson, as well as at London, Portsmouth, Plymouth, Exeter, Solihull and Kings Lynn.

Yours sincerely
Pamela Nomark

I wrote again three days later.

Dear Mrs Lotus

I have just finished a book I feel any female threatened with hysterectomy should read. It's called "The No-Hysterectomy Option" by H A Goldfarb and J Greif, published by John Wiley & Sons, ISBN 0-4781-51615-5.
You were correct. There are a few gynaecologists who do not love mutilating women. He says of the notion that hysterectomy is a relatively risk-free panacea for the woman who is troubled by a gynaecological problem that "nothing is further from the truth." And that's in the preface!
He states the many awful consequences of hysterectomy (and how to try to deal with them where hysterectomy is unavoidable) and also says that in his experience 8 out of 10 women want their uterus preserving. He also says:-
"Furthermore, a woman, regardless of her childbearing plans or potential may have physical and emotional reasons for wanting to preserve her uterus and her feelings must be respected."
Try telling that to the NHS!
He also has a few things to say about the 30 minute hysterectomy, a photocopy of which I enclose.
It's an up-to-date, comprehensive and not too technical book and as I said I urge you to advise any female threatened by hysterectomy to read it. Then if she is one of the 8 in 10 that wants to keep her womb she should write to the Royal College of Obstetricians and Gynaecologists to find a medic suitably qualified in the restorative procedure she wants instead of getting what the profession wants to give her.

Yours sincerely
P Nomark

In June I received another copy of the Network Newsletter. In a review of a book on HRT the reviewer was puzzled by the statement that "HRT should be advised if you have lost your ovaries from surgery or though radiation treatment or if you've had a hysterectomy". She obviously didn't realise that hysterectomy can cause ovarian failure and had not seen the HRT booklet by the Osteoporosis Society which I'd advised the Network get months previously. I found it odd that somebody reviewing literature for the Network should be ignorant of such long known facts. I was also disturbed by the comment on the "mainly negative" press coverage on women's experience of sex and orgasm after hysterectomy, which was that "a quick straw poll of the Network Working Party suggests a more positive outcome. We would be interested to hear from you". If you have a more positive outlook?
There was also a slip for subscription renewal. I decided to write to the secretary.

Dear Ms Penn

I'm sorry not to be sending a letter of thanks like your other correspondents but I wrote to Mrs Lotus at the end of March and have received no reply to my query. I enclose a copy of this letter. As you will see this mentions the Osteoporosis Society's Hysterectomy and HRT publication, a concise, up-to-date booklet which I recommend you obtain. This clearly states why women may need HRT after "simple" hysterectomy. It's because hysterectomy often ruins your hormonal balance. Page 18 states "A quarter of women start to have symptoms of the menopause within 2 years of their hysterectomy." On page 5 they say "Even if you do decide to keep your ovaries* you should still consider taking HRT to prevent menopausal symptoms and later heart and bone problems". And on page 19 "Some gynaecologists think it wise to take HRT immediately after your hysterectomy, regardless of whether or not you have had your ovaries removed. Waiting for menopausal symptoms to occur is not a reliable guide to the development of osteoporosis. Some women (a minority) experience few, if any, symptoms." The Osteoporosis Society is rightly concerned with the major effects of this disease. They state that more women die after hip fractures than from cancer of the ovaries, cervix and uterus combined. As it is primarily a disease of old women it has, of course, very low priority.
I have recently read "The No-Hysterectomy Option" as I mentioned in my enclosed letter to Mrs Lotus. Having no money for books (being on Income Support) I reserved it from the local library. I hope you will soon review it. Like the Osteoporosis booklet it is up-to-date and comprehensive. I enclose copies of the news article on HERS founder Mrs Coffey and the text of the HERS leaflet.
I wrote to Mrs Queen on the contact list in May. She did not reply.
If the Network is, in fact, a Hysterectomy Appreciation Society please return my cheque as I regard this mutilation as an abomination to be suffered only in situations of dire necessity.

Yours sincerely
P Nomark

* Vikki Hufnagel "No More Hysterectomies"
All unnecessary surgery is bad: some gynaecologists, for example, routinely remove the ovaries during a hysterectomy if the woman is over 45; some never would. Male gynaecologists would certainly not be happy if along with a hernia operation the testicles were removed to prevent possible testicular carcinoma. The ovaries, even in a post-menopausal woman, contribute to her hormonal health. Oestrogens prevent osteoporosis and heart disease and your own hormones come in a more measured, natural and continuous dose than those in a pill or in a patch. As for cancer, we can now screen women using ultrasound scanning.
Professor Stuart Campbell
Head of Department of Obstetrics and Gynaecology, Kings College Hospital

At the end of August I received a notelet from Mrs Lotus. It was a WWF design on recycled paper with a very attractive jungle picture. It said:-

Dear Pamela

Just a note to say I haven't forgotten you and I will write soon I promise. You said you were disappointed I hadn't replied but you misjudged me as I will always reply to your letters. I would not be so rude as to ignore your letters. I enjoy reading your opinion, which I know are different to my own, but we can learn from each other and I always enjoy and read the items you send.
To be honest, my family and I have recently suffered and are still facing a traumatic difficult time and it is all I can do to keep up with the new letters requesting information.
Please bear with me and I will answer your last letter as soon as it is possible for me.
I have enclosed details of a new book which you may find of interest. It was recently reviewed with the authoress on G.M.T.V.

Bye for now
Shiela

There was no enclosure. I was intrigued. Had somebody died. I was beginning to feel like Typhoid Mary.
In September I got a letter from Ms Penn.

Dear Ms Nomark

Many apologies for not replying to your letter sooner.
I have read your comments with interest and would like to reiterate the Network's aims which were stated in the last newsletter -
"THE NETWORK SEEKS TO ENCOURAGE SELF-HELP THROUGH INFORMAL SHARING OF EXPERIENCES, INFORMATION AND AWARENESS ABOUT HYSTERECTOMY. THE NETWORK WOULD LIKE TO SEE WOMEN MORE AWARE OF WHAT GYNAECOLOGICAL PROBLEMS COULD RESULT IN A HYSTERECTOMY AND WHAT OTHER COURSES OF TREATMENT MAY BE AVAILABLE. WE WANT MORE DISCUSSION AND SHARED KNOWLEDGE SO THAT IF HYSTERECTOMY IS THE BEST SOLUTION, WOMEN UNDERSTAND THE CHOICES PUT BEFORE THEM."
This is really the same thing you are saying, ie that women should know ALL the facts. In other words, we are not a pro-hysterectomy "Hysterectomy Appreciation Society" but try to ensure that women are well informed of all the implications involved. We will shortly be reviewing Jan Clark's book on "Hysterectomy and the Alternatives" and you will note that Dr Hufnagel's book "No More Hysterectomies" (which you quoted from) is, in fact on our book list.
Some women contact us when a doctor has suggested a hysterectomy and we are able to provide them with information (booklist, leaflets etc). We do not offer medical advice and would NEVER suggest that a woman should or should not have a hysterectomy - that is between her and her doctors. Sometimes women are afraid to ask their doctors questions or don't know enough about what is involved to know what questions to ask. We can provide information and give them the confidence to ask, for example what is involved, why the operation has been suggested and what the alternatives are.
Of course, a lot of women only find out about us after they have already had their operation and are experiencing problems. Our hard-working team of experienced Network members who deal with letters and the telephone Support Contacts help many women who may feel alone with their problem. Members can share their problems. It is a great comfort to know that there is light at the end of the tunnel. Members' positive experiences show how problems have been overcome and give encouragement to others. You will note that we also publish "negative" experiences and letters from people who are having problems and try to put them in touch with others.
Many women who contact the Network do not go on to join because they have received the help they need. Some women decide to join because they need or like the on-going help given by the newsletter and also wish to support the aims of the Network.
I was motivated to join the Network when, a few years after my hysterectomy, I was watching a phone-in programme on the subject on TV. A caller was due to have a hysterectomy in a couple of days and knew absolutely nothing about what was involved or what alternatives there were; no-one had explained anything to her. The programme put her in touch with the Network. I too contacted the Network to offer my services as I felt everything possible should be done to rectify this appalling ignorance. The Network deals with hundreds of letters and many, many people are helped either by getting information or having someone to talk to who understands their situation. With this help, they are then in a better position to reach a decision about what course of action to take. It is precisely because there was a need for this service that the Network was set up. It would be marvellous if all Gynaecologists had an open dialogue with their patients and all the information, problems, risks, alternative solutions etc were discussed before coming to a mutual agreement. I could not agree with you more on this point. AND THIS IS WHAT THE NETWORK WOULD LIKE TO SEE! You seem to have missed the point of what the Network is all about. You seem to be very anti-hysterectomy and as we said in the newsletter, we are neither pro nor anti but encourage women to have all the facts in order to make an informed choice which is right for them.
I'm sorry that you don't seem to find the Network helpful or agree with our aims. I have returned your cheque but should you decide to join the Network we would be very pleased to have your support.

Yours sincerely
Mandie P
Membership Secretary

It's a pity the members didn't read the Hufnagel publication that they put on their book list. She goes into great detail about ovarian failure.
Did the Network tell females with fibroids that myomectomy was possible in nearly all cases? Do they really think medics are going to give women this information?
Shortly afterwards I came across the book "Fibroids" by Felicity Smart. In the introduction the author relates how she was referred to a gynaecologist because of fibroids and without hesitation recommended to have a hysterectomy. As she puts it "given my age (I was in my late thirties), my womb and I were considered to have had our best years together. There would be little point in restoring my fertility now.
I explained (it wasn't easy) that for me having a womb was not simply a matter of fertility. I regarded my womb as an important part of myself as a woman. Since there could be a choice of treatment for fibroids, I didn't want my womb removed. I saw nothing wrong in keeping my fertility either. This attitude was not seen as sensible."
She finally got conservative treatment though a personal contact who knew a gynaecology professor.
If a professional health writer finds it difficult to communicate her disinclination for mutilation how does the common working class woman manage. And who is going to help her articulate her antipathy, distress, confusion? Or are they too ignorant and insensitive to understand what is going to happen to them?
One thing's for sure. Few of them have professors amongst their friends' friends.
In mid October I received my last letter from Mrs Lotus.

Dear Mrs Nomark

I am sorry for not writing to you sooner but as you know I have had many problems and was unable to write until now.
Thank you for the information you sent especially the literature from the HERS foundation. My own personal opinion about some of the stuff you sent was that it is very extreme and I can't agree with many of the points raised in the article. I do not consider myself as having been castrated, I find that term quite offensive.
The point of all this is that we disagree with each others views. You cannot make me agree with your views and I can't make you agree with mine. I feel that in your case if you don't want to have a hysterectomy then don't have one, end of story.
I also hear that you have been in touch with our secretary and that you feel that as a group that we are in favour of hysterectomy. If we had felt that way then we wouldn't be running the group now. We run the group because we all suffered badly from the effects of hysterectomy and we want to offer support and help which we all would have appreciated.
I don't think we will ever agree, I feel that I am here doing this because I care and want to offer support and advice. You obviously see my role differently, but I know me and I know why I do this work, so that's all that matters.
I do not think I am able to offer you anything more as you have made up your mind that we are a bunch of hysterectomy supporters. Therefore there is no point in us maintaining this correspondence. We will just have to agree to disagree, it wouldn't do for us all to be the same.
I wish you well for the future and hope your health remains stable.

Best Wishes
Shiela Lotus

In her first letter to me she had written, "Most women, like yourself have a choice and are quite happy to have a hysterectomy and resume normal life." Now she was saying, "We run the group because we all suffered badly from the effects of hysterectomy". Not from the effects of menstrual symptoms but from the supposed cure! How could anybody resume a normal life while suffering badly from the effects of medical mutilation? If the Network was seriously against the nasty effects of hysterectomy why didn't they tell women about alternatives, tell them that myomectomy was nearly always possible, direct them to centres providing endometrial resection and inform them of the true extent of hysterectomy effects. In fact say unless you're desperate don't have this abomination.
I found it ironic that it was the Network's newsletter that had given me the HERS address to write to, since Mrs Lotus found their views so extreme. Just as well that I never told her about my latest reading "The Castrated Woman: What Your Doctor Won't Tell You About Hysterectomy" by Naomi Miller Stokes.
It must be said that an animal - ANY animal - male, female, cat, calf or human, which has its gonads removed has been castrated. This is not an insult but a basic biological fact.
And I never did get any information from the Network on just what fibroid women were told by their medical advisors.
All too often, doctors and patients chooses hysterectomy to resolve problems, incorrectly assuming that pelvic surgery has no negative consequences. But surgery to remove the uterus is not a mild or innocuous procedure.