7 The Professor


	At Age 45, Claire came to me complaining of extremely heavy periods. 	Though in agony, she was emphatic about keeping her uterus. After removing 	nine fibroids from her uterus, I was taken to task by one of my colleagues 	who could not begin to understand why I had not talked her into a more 	"sensible" hysterectomy. Yet, after her surgery, Claire was left with an 	essentially normal-sized uterus, and was delighted when her next period 	was completely normal. Furthermore, she attained menopause without any 	recurrence of her symptoms.
	The No-Hysterectomy Option: Your Body, Your Choice by H A Goldfarb and J 	Greif

On 20 December 1992 I had written a perhaps unusually neutral letter to the secretary of the Royal College of Obstetricians and Gynaecologists.

Dear Sir

I have a large fibrous mass, presumably uterine fibroids. Since I have no desire for hysterectomy, the usual treatment, could you tell me which of your members is experienced in conservative surgery, i.e. myomectomy.
I should be particularly interested to hear of any performing laparoscopic myomectomy similar to Hasson in the US or using GnRH-a preoperatively.

Yours sincerely
Pamela Nomark

His reply was dated 7 January 1993.

Dear Ms Nomark

Thank you for your letter of December 1992. Myomectomy is a frequently performed operation and would be well within the expertise of most of our members.
It is quite common practice to use GnRH-analogues preoperatively, but I am not aware of any gynaecologist in your area performing laparoscopic myomectomy as a routine. I have therefore passed on your letter to Professor Tizzy, who is in charge of the academic department of St Mary's Hospital. Either he or I will be in touch with you again about this issue.

Yours sincerely
HONORARY SECRETARY

Professor Tizzy's letter was dated 11 January.

Dear Ms Nomark

Your letter to the Honorary Secretary of the Royal College of Obstetricians and Gynaecologists has been passed to me.
It would be more appropriate to see you and discuss all the possibilities about the removal of fibroids. We have several patients who have had myomectomies, many of whom have been offered a hysterectomy operation. If you would like to contact my secretary then we can easily arrange to see you at a mutually convenient time. With the new Health Service arrangements you will probably need to get a letter from your GP giving us details of the investigations and findings to date.
With regard to your specific queries we do use GnRh preoperatively in certain cases. The question of laparoscopic myomectomy does depend on the size, number and position of the fibroids before and after the GnRH treatment.

Yours sincerely
V R Tizzy
Professor of Obstetrics and Gynaecology

I saw Dr Amicable on 20 January but since she appeared to have little information about investigations or findings, I decided to send the professor all the records I already had and the ultrasound scan I was planning to obtain. This was far more than Dr Amicable had since she had neither a copy of the ultrasound report nor any of my case-notes. When I finally got a copy of the scan, on 20 March, I wrote to him.

Dear Professor Tizzy

I passed your letter of 11 January on to my GP, Dr Amicable. I assume that she has been in contact with you. I have been attempting to extract my records from the NHS since last October and finally have them - though I feel that their informative content is slight.
I enclose:-
a  - the above mentioned records
b  - a copy of a letter I wrote to my GP about my medical treatment
c  - my version of my medical history
d  - a copy of a HERS leaflet which I believe to be the only honest information about hysterectomy
e  - my correspondence with Dr Friedman.
                                                   
I continued with a long moan about the discrepancy between what Miss Godly said about the ultrasound scan and what the radiologist said, the difficulty I had experienced getting the scan and my usual suspicions about the wholesale destruction of the female reproductive system perpetrated by the medical profession. I ended with...

I have complained to the FHSA about my previous GP. I have seen a solicitor about suing him. I have complained to the NHS about the Royal. Before last year I had never complained to anybody about anything. For all the good it has done I might as well have talked to a brick wall.
I have written for information but the only convincing material I have received has been from the HERS Foundation which confirms all ny worst suspicions. I am extremely vexed and I feel that women in general are very shabbily treated by the medical mafia, and globally at that.
As I have previously stated I am not being mutilated and I am not being slashed "on spec". If the NHS cannot come up with a definite diagnosis I have great doubts about its competence, as well as of its intentions.
I hope that some of the enclosed bumf is of interest to you and that I can look forward to an illuminating reply or at least an indication of whether there is any point in contacting your secretary for an appointment.

Yours sincerely
Pamela Nomark

On March 31 I wrote to my GP.

Dear Dr Amicable

I enclose a copy of the ultrasound scan performed nearly a year ago. I hope you find it of more interest than I did. It provides no information on size, number or situation of masses and, as I wrote to Prof Tizzy, Ms Godly says that "an ovarian neoplasm cannot be excluded even despite the ultrasound report" which presumably means that she has little faith in the radiologists identification either of my uterus or my "normal" ovaries.
I also enclose a copy of a leaflet from the American HERS Foundation. They don't give a rosy picture of life after hysterectomy.
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"
Well I suppose it will save you the trauma of childbirth. And you could have those useless potential cancer sites, the ovaries, replaced by good old HRT at the same time. Then you could tell me from a position of experience what a great operation it is.
Personally I wouldn't advise it though virtually the whole of the medical profession (a male dominated, non-womb owning fraternity) would.

Yours sincerely
Pamela Nomark

Professor Tizzy was also writing on the 31 March 1993.

Dear Miss Nomark

Thank you for your letter and all the details.
First of all I should stress that no-one will operate on  you unless you personally agree. The reason for any operation should be fully explained and also the details of the procedure which will be carried out. Secondly, I have not heard from your GP.
If the fibroid or fibroids are causing you any symptoms then it or they can be removed from the uterus and not with the uterus. The operation can be made technically easier by the use of injections at 3 or 4 weekly intervals for 3 to 4 months prior to the surgery. The incision necessary to remove the fibroid or fibroids depends on their size. From what you say your fibroids are approaching the size when it may no longer be practical to remove them through a bikini line incision.
We have a few patients like yourself who we assess on a yearly basis with ultrasound to check that the characteristics of their fibroid(s) have not changed dramatically. They are usually benign and increase in size slowly, but occasionally they can undergo change (uncommon, but it does happen).
If you wish, and your GP requests this, I will arrange for you to have a detailed ultrasound to determine the size of the fibroid or fibroids and will let you and your GP have a copy of the report. If you both decide that it is what you want please contact my secretary.
I an sorry that your experience of the NHS complaints procedure has been poor to date. All I can do to help to restore some confidence in the service is for us to provide you with precise ultrasound details of the size of your fibroid(s).

Yours sincerely 
V R Tizzy
Professor of Obstetrics and Gynaecology

On 3 April I again wrote to my GP.

Dear Dr Amicable

I enclose a copy of a letter I have received from Prof Tizzy. He has actually suggested a proper detailed ultrasound to determine the size of the fibroid(s)! Something I expected to get a year ago. After only a year of delay, disinterest and "Have a hysterectomy on the NHS. You know it makes sense." What do you know, somebody capable of more than a quick, convenient amputation? I'm astounded.
If you are not going to request his assistance would you let me know before Friday, when I intend to telephone his secretary for an appointment.

Yours sincerely
Pamela Nomark

I heard nothing from Dr Amicable - EVER.
I telephoned the professor's secretary but she said she couldn't make an appointment without a referral letter from my GP. So I waited. And waited.
And on 10 May I telephoned the surgery. Dr Amicable had gone on maternity leave in March. I had not been referred. Presumably my letter had just been ignored. The receptionist suggested that I make an appointment to see one of the other partners to "discuss"  it. I saw nothing to discuss. I just wanted a referral. The receptionist would ask one of the doctors to refer me.
On 17 May I telephoned again. No, I had still not been referred. The receptionist told me that she would see Dr Richman after the surgery had finished. I rang back later to see that she had and was assured that I was definitely being referred.
I came to the conclusion that the doctors were annoyed at my attitude. I was supposed to be the humble, grateful patient - meekly doing whatever the doctor ordered and going to see whoever the doctor chose to send me to - whether that was a highly skilled specialist or, as is much more usual, the local butcher. They were most annoyed that I was not satisfied with their nice, little mutilation and their nice, local mutilators.
The clinic notes record:

24/5/93	series of messages left with receptionist about referral to Professor Tizzy over past 2 weeks
	Referred patient to myself "no need" Discussed PMA who suggests referral for opinion only to professor Tizzy. referral made.

I never realised that the professor was supposed to be giving an opinion only, and he didn't act as though he knew either. I sounds as if Dr Amicable was still trying to reserve surgery for her friend, Mrs Languid. Mutilation, of course, since Mrs Languid was incapable of doing anything else. I thought Dr Richman's letter to the professor was rather stuffy, and even disapproving.
 
Dear Professor Tizzy

PAMELA NOMARK

I understand you have had correspondence with Miss Nomark, who I believe has a large fibroid or fibroids and has suffered from iron deficiency anaemia in the past. She usually consults my partner who is away on maternity leave at the present time and Miss Nomark is keen for referral to you. Unfortunately I myself have not seen and discussed the situation with Miss Nomark who feels it is not necessary.
I gather Miss Nomark has many concerns about surgical treatment for fibroids. I note that she has been seen in the past by Mrs Languid in April 1992 and Miss Godly at the Royal.
I should be very grateful if you would arrange an outpatient appointment and provide your opinion at the present time so that we can fully discuss the options with Miss Nomark.
Thank you for your help.

Yours sincerely
DR C RICHMAN

I next wrote to the professor on 14 June 1993.

Dear Professor Tizzy

Your secretary sent me a form to fill in for medical records so I am enclosing an annotated edition of my medical experiences of the last 5 years.
I wrote to the radiologist, Dr Fewins, about her ultrasound identification of my lump and the gynaecologists complete disregard of its content and enclose a copy of the reply.
I decided to follow Mr Yates advice and wrote to Dr Godly about her lack of confidence in ultrasound and other matters that have been rankling and enclose a copy of the letter.

Yours sincerely
Pamela Nomark

My appointment was for 19 July 1993. The professor did not believe that hysterectomy's unpleasant aftereffects were a serious health hazard but he was quite prepared to remove fibroids alone if a woman wanted to keep her womb. He did not require a permanent attendant in the room as both Dr Godly and Jack Ketch had. Perhaps he did not feel the need for psychological back-up.
From an examination he could tell that there were no more than two masses. There seemed to be a harder section. My opinion of gynaecologists went up by several giant steps.
I was to have a detailed ultrasound to check that the ovaries were normal. The professor would get the radiology department to arrange an appointment.
I had not been home long when the hospital rang and arranged a scan appointment for the 22 July.
Both the professor and a radiologist examined my internal organs. The radiologist had a new, wider scanner head and the ultrasound equipment was obviously expensive. The scan showed that, as Dr Fewins had said over a year ago, my ovaries were normal. The womb lining was normal and the womb was topped by a single, melon sized fibroid with a calcified area. The mass had been leaning on my ureters and the pressure it had produced in them had caused the collection areas in the kidneys to swell slightly.
In fact the scan went like this:-

PELVIC ULTRASOUND: There is an anteverted uterus much of which appears normal and this portion is about 7.3 cm in length with an endomtrium 4 mm in thickness and an AP measurement of 2.1 cm. However, from the uterine fundus there is a large, solid mass measuring in the region of 15.7 x 15.0 x 9.8 cm. It has a whorled appearance and contains some calcification, the appearance being typical of a very large fundal fibroid. Both ovaries were seen separate from the uterus and were normal, the right measured 3.5 x 1.7 x 3.3 cm and the left 2.0 x 2.3 x 2.3 cm. Each ovary contained small follicles. Following emptying of the bladder the kidneys were reviewed; they were normal in size, the right being 10.3 cm and the left 10.7 cm in bipolar length and the parenchyma was normal in thickness and in texture. However, each pelvicalyeal system was mildly dilated, the right renal pelvis being separated by 9 mm and the left by 1.4 cm in the AP plane. The left upper ureter was also seen to be dilated at 3 mm in diameter.
CONCLUSION: There is a large, fundal fibroid and the rest of the uterus appears relatively normal. There does not appear to be encroachment on the uterine cavity. This is associated with a mild, bilateral hydronephrosis, presumably secondary to pressure on the ureters from the fibroid.

I now knew the exact size of my ovaries and kidneys, as well as that of the mass. Isn't real professional ultrasound marvellous - when you can get it.
As the fibroid was showing signs of degeneration it might not shrink much with Zoladex treatment though this would certainly reduce operative bleeding. The professor thought it might have been growing for 10 to 15 years. He described its removal as "technically easy" and was willing to arrange Zoladex treatment to start immediately.
I was not prepared to make an immediate commitment to surgery. I had read many accounts of operative complications and needed time to get used to the idea of being chopped. I was studying with the Open University and had an examination due in October. This would mean that not only would my exam be shortly after the time I was due for surgery but also mean that my revision time would be spent coping with the menopausal effects of the Zoladex treatment. Hardly the ideal study conditions. The professor suggested I start Zoladex in November. As he was retiring in September his colleague would take over.
I later wrote to the professor.

Dear Professor Tizzy

Since you seemed surprised at the high frequency of hysterectomy for fibroids I enclose photocopies of sections of 4 articles which quote hysterectomy rates. As you can see fibroids are top excuse in the US, the UK and Australia, accounting for 20-40% of all hysterectomies. Moreover according to Reiter et al in one third of cases the woman is entirely asymptomatic, the mere presence of a 12 week mass being considered reason for major, mutilating surgery - unjustifiably so in Reiter's opinion.
I also enclose 2 articles by Slade et al. The "cautionary tale" involves a fibroid female, bleeding heavily for 12 years, who was advised to have a hysterectomy and offered resection when she didn't want amputation. When resection proved ineffective hysterectomy was again pressed upon her. Her uterus was initially of only 12-14 weeks size and apparently contained only 1 myoma. Fibroid removal in these circumstances should have been technically easy yet it was apparently never mentioned and the poor cow got the mutilation she obviously didn't want.
I get the distinct impression that she was used as experimental fodder for the resection enthusiasts and have written to Mr Slade telling him so.
The other article mentions women (all aged 39+) undergoing resection so they presumably did not want children. But they were all keen to avoid mutilation. I don't know if the fibroids will stay regressed but I'm 100% certain of the type of treatment that will be forced upon the womb owners if their problems recur.
Articles like this support my conclusion that many women do NOT welcome hysterectomy but are treated according to the whims and prejudices of the gynaecologist, with no consideration whatever paid to their feelings. And although there are, of course, exceptions the mere numbers of what I can only regard as unnecessary mutilations done implies that the considerate gynaecologist is the exception not the rule. Besides the increased risks of cardiovascular disease, osteoarthritis and osteoporosis following hysterectomy induced premature ovarian failure I have also seen reports of risks of vaginal prolapse, residual ovary syndrome, colovaginal fistula after colorectal surgery, vaginal cancer, sexual dysfunction and depression. It has been observed that the last effect is most marked in women who don't want a hysterectomy so women are now informed that if they get depressed it's because of their bad attitude.
I realise that some of these conditions are quite rare but I also note that the case study after Slade's "cautionary tale" involves vaginal cancer following hysterectomy. Bell suggests that in view of this increased cancer risk cervical smears should be replaced by vaginal vault smear tests. I also get the impression that the ovarian failure effects are associated with age at hysterectomy and are not therefore so pronounced in older women.
On the positive side of hysterectomy there is no risk of uterine cancer afterwards and very probably no menstrual problems (I have read of cases of persistent endometriosis and PMT). As I had no menstrual problems whatsoever for over 25 years and now have only the inconvenience of heavy bleeding necessitating iron therapy and inoffensive leucorrhea I cannot regard this as a great advantage.
I also purely and simply do not want my uterus removing. I realised that I was extremely reluctant to part with my organs after viewing a TV program on breast cancer which stated that mastectomy gave no better chance of survival than lumpectomy. I've donated blood to the NHS 10 times. They are not getting any of my organs.

I related the delay in getting a referral from my GP and finished with.....

I have written to Miss Godly and enclose copies of the
correspondence. When I first went to Dr Amicable in April 1992 I informed her of my extremely negative views on hysterectomy. I am VERY, VERY angry that she has apparently totally ignored my feelings and deliberately sent to a hysterectomist for fixing.

P Nomark

On 28 August 1993 I wrote to Dr Goldfarb - he of the "No-Hysterectomy Option".

Dear Dr Goldfarb

Last year, at the age of 44, I was found to have a 23 week sized mass. The opinion of the gynaecologist I was sent to by my GP was that I should have a hysterectomy NOT a myomectomy. She went on about how myomectomy was a long operation and required a long recovery time and how fibroids could recur. 
She did not personally examine me and her colleague had only an external grope of the lump. The only investigation she considered was an ultrasound of which she wrote "....that we could not be certain without doing a laparotomy whether the mass was ovarian or uterine: that it probably was uterine but one couldn't be 100% certain just by going on ultrasound reports." 
Since seeing her I have read your book The No-Hysterectomy Option which says "if a woman is 40, the chances are overwhelming that she's not going to have problems after myomectomy because the menopause will intercede", which would seem to dispose of the recurrence problem. 
You also say "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". 
I do not feel that my feelings HAVE been respected by this woman since I told her quite plainly that I did not want a hysterectomy. Moreover this fibroid trouble has been the ONLY menstrual problem I have EVER had. 
I have come to the conclusion that her opinion was based solely on my date of birth and her slavish conformity to Victorian medical dogma. 
I later had a detailed ultrasound scan which shows that I have a single melon sized, fundal fibroid sitting on top of what is apparently an otherwise normal reproductive system. I enclose a copy of the report. 
Can you tell me what the relative operative times and risks of
myomectomy and hysterectomy are likely to be in these circumstances?
And is my distrust of this hysterectomist a logical result of the
application of reasoning or an instinctive gut reaction from being threatened with unwanted mutilation? 
I would appreciate a brief note on these queries. 
 
Yours sincerely 
Pamela Nomark

I had hoped that Dr Goldfarb would make some sort of comment about Miss Godly's "treatment" and her determination on hysterectomy without consideration of either my feelings or the operative feasibility of myomectomy. However he was too full of professional courtesy to in any way criticise a fellow medic. He wrote on 14 September:-

Dear Ms Nomark

I read with interest your ultrasound report and the history of your gynecological problem.
The ultrasound size being 15 x 15 cm is certainly a significant myoma.
I would suggest the following. You need to go on Depo-Leuprolide1 for a period of 4 months. Following the completion of these 4 months, a complete scan of the fibroid should be done. If there is significant shrinkage of the fibroid, then we could do an operative laparoscopy and do a laparoscopic myomectomy, removing the fibroid without having to do an open abdominal surgical procedure.
The above procedure we do frequently and therefore, I am comfortable with doing laparoscopic myomectomies.
However, the hospital costs would be significant in that without insurance reimbursement, the hospital fees would run up to $10,000.00 not including physician's fees which would be another $7,500.00 Therefore, you would end up spending close to $20,000.00 with transportation and lodging, in order to save the uterus. Of course, that would be your decision vs. having a myomectomy done by surgical procedure in the U.K.
Certainly, I have no problems with doing myomectomy and if you are intent on avoiding hysterectomy, I don't see why that cannot be accomplished.
If I can be of any further help to you please do not hesitate to call me.

Sincerely
H A Goldfarb, M.D.
 
His estimate of about ?20,000 was the same figure I had arrived at from Vikki Hufnagel's book which I had read more than a year previously. However as a pauper on the dole I doubt if I could have scraped together a twentieth of that amount. It must be so nice to have so much money that you could choose the medical treatment you want and not be routinely scheduled for the routine, ?1,300, butchery of NHS hysterectomy.
On 4 August Professor Tizzy was writing to his colleague:-

Dear Paul

Miss Pamela Nomark

I enclose for your perusal the notes and correspondence about this lady who wishes to retain her uterus.
She has an examination on the 26 October so if you could see her shortly after that (say early November) to start Zoladex prior to a myomectomy operation, I would be grateful.

Yours sincerely
V R Tizzy

And on 13 September he wrote to Dr Richman:-

Dear Dr Richman

Pamela Nomark

I saw Miss Nomark on 22 July 1993 when she had detailed ultrasound scan, a copy of which I enclose. Dr Rimmer, the Consultant Radiologist, and I discussed the potential effects of pressure of the fibroids on the ureters with Miss Nomark.
As I am retiring at the end of the Academic Year I asked my colleague, Dr Paul Dunn, if he would take over her care after Miss Nomark's examinations in October. An appointment has been made for Miss Nomark to see Dr Dunn on 3/11/93.
The plan, subject to Miss Nomark's agreement, is for a myomectomy operation to be carried out after 3 or 4 courses of GnRH analogue to reduce the size of the fibroids.
I am sorry for the delay in communication, but I passed on the notes and voluminous correspondence for review.

Yours sincerely
V R Tizzy
Professor of Obstetrics and Gynaecology

My sister thought that I should have started the Zoladex treatment when it was offered in July and had the fibroid taken out as soon as possible - after all it was over a year since Mrs Languid had "tried to persuade me " that I needed a "laparotomy" and the mass had got no smaller nor my bleeding any lighter. After I had seen Dr Dunn I was inclined to think that she was probably right.


1 A fibroid shrinking drug of the same type as Zoladex.