Hysterectomy and sexual wellbeing: prospective observational study of vaginal hysterectomy, subtotal abdominal hysterectomy, and total abdominal hysterectomy

Mr. Roovers,

Perhaps I'm mistaken, but it's always been my understanding that one
does not have to be a physician or clinical investigator to read and pick
apart a poorly done study. It would seem a bit of an elitist attitude to
presume that only those who are published may comment on your paper or
have questions and concerns about it, Mr. Roovers.

As a professional patient advocate who fields queries from women day
in and day out on reproductive disease and treatment options, major press
releases on research picked up by the mass media on a scale such as this
study is a fully indescribable irritant. When the research is great,
fielding these queries is easy and a joy. When the research is flawed, it
makes my job 1000 times harder to sort it all out to create the proper
response that explains the problems with the study appropriately.

When the BMJ chose to publish this particular paper and its
corresponding press release, a trickle down tidal wave was created with
women worldwide that I sincerely find doubtful you understand even
remotely, Mr. Roovers. Not even as a soon-to-be gynecologist. The
National Uterine Fibroids Foundation and every other organization publicly
supporting women by providing information on reproductive disease and
treatment options know it only too well. Join me for a year of MY work,
Mr. Roovers, and perhaps your perspective on this will be broadened to
more fully and charitably comprehend the impact.

A few questions:

1. Were you or were you not a doctoral student when this study was
written and published as part of your thesis in 2001?

2. Table 3. How many women actually responded at 6 months? 100% of
the 310 for every question? Please clarify the numbers associated with
response at 6 months for each arm of the study and for each question.

3. Do you honestly think that a hysterectomy study of 310 women
split three ways across a multitude of clinical facilities/surgeons and
asked 36 questions is a large study of tremendous statistical value that
can be seriously relied upon by women and physicians in the decision-
making processes of making a treatment choice? Especially in light of
some of the problems identified with this study, such as no control on
ovary retention? Also, out of context with your other research work on
micturition and defecation?

4. Are you of the belief that ovaries are of no consequence in
considering a study on female sexual function outcomes and/or that HRT (of
ANY sort) is a comparable substitute? If my questions/concerns raised on
this issue are of no concern to you, why did you then review your work and
subsequently post a 3.8% oophorectomy statistic?

5. In your pursuit of medical education, how many hours of
classroom/field study were you required to complete on the topic of female
sexual function?

6. As for research, can you share with me how much money the
prestigious institutes you identifed spent on disease specific studies vs.
hysterectomy treatment studies? In other words, how much money during the
last decade -- year by year -- have those institutes spent on the
following:

- uterine fibroids
- endometriosis
- adenomyosis
- ovarian cysts
- prolapse (unrelated to the hysterectomy)

For that matter, how much did your entire public health system
allocate for study of these health issues?

While I understand that the field of gynecology has been in triage
mode for well over 100 years in utilizing the hysterectomy as a treatment
for a wide variety of female reproductive disease, if you don't mind, Mr.
Roovers, I would personally like to reserve the majority of my
professional respect for researchers who choose to work on the expansion
of our body of knowledge on reproductive disease and ALTERNATIVE treatment
options that would allow a woman to retain her body parts fully intact
while potentially avoiding the risks of major surgery.

I've sent you private email which you've not chosen to answer.
Hence, my public postings and queries.

Carla Dionne

Footnote: The following is offered to assist your search in
determining "who" I am:

1. Go to any online search engine and type: "Carla Dionne" -- put
my name in quotemarks to filter for best results. While not all "Carla
Dionne" listings are about me, you'll know which ones are relevant. A
metasearch can be done at: http://www.dogpile.com

2. http://www.uterinefibroids.com

3. http://www.NUFF.org

4. sex, lies, and the truth about uterine fibroids. c2001 Penguin
Putnam/Avery.

5. A secret not well known to the public at large but well
understand by physicians who publish: ghostwriters and medical students
are the actual authors of a great many published medical papers. I am
published in PubMed and also with a variety of additional book publishers-
-but you won't find any of this work under my name. Running a relatively
new nonprofit on a publicly funded shoestring isn't easy, Mr. Roovers.
While I may not have a MD or PhD to place after my name, I have been a
professionally paid technical researcher and writer for ~20 years.

6. I've been a woman my entire life, a woman diagnosed with
reproductive disease for 18 years, and a woman who has suffered through
post-procedural sexual dysfunction and the subsequent oft-humiliating
scrutiny of poorly educated medical professionals (who know little to
nothing about female sexual function) for 6 years.

7. I enjoy my sex life and have worked hard to regain it during the
past 6 years. I wouldn't wish post-procedural sexual dysfunction on even
a single woman, much less be even remotely dismissive of the numbers
suffering at 6 months per your study.

Competing interests:
None declared

Ms. Martin,

The Roovers study was so seriously flawed, in my view, it added
NOTHING to our current body of knowledge on hysterectomy and sexual
function. Further, the "vitriolic" exception I take to this study has
zero relationship to censorship and everything to do with the BMJ's
publication of such a flawed piece of work AND the press release they
subsequently disseminated on it to promote their journal. A press
release, BTW, which was picked up by over 200 press sources at my last
count. Considering my view of the unworthy nature of this paper, this
mass media run generated expressly by the BMJ for sensationalistic-
attention-grabbing purposes was indeed an element which caused great
distress and tremendous anger by myself and a multitude of women's groups
which our organization affiliates with and/or supports.

Hysterectomy and sexual function studies performed using currently
accepted validated sexual function instruments by professionals in the
field of female sexual function are what I would ask for and expect from a
publication such as the BMJ -- not miniscule studies done by doctoral
students who do not have appropriate sexual function education, research
knowledge (as clearly identified by the lack of an appropriate
bibliography to support this paper--not to mention the fact that the paper
seemed to have completely changed it's bibliography from the first time it
was published as a thesis chapter in 2001 vs. here in the BMJ) and
clinical experience.

The simple fact there wasn't any mention of ovaries ANYWHERE in this
paper was more than enough for me to find it incredulous that the BMJ
would even consider publishing this nonsense. Roovers' subsequent Rapid
Response indication of 3.8% oopherectomy does not clarify this in the
least. 3.8%? Really? I find that statistic amazingly low and a bit
unbelievable.

In addition, the HRT these patients received was ????? Estrogen?
Progesterone? Testosterone? Some combination therein? Puh-lease.
Without specificity, the apples, oranges, and grapes thrown into the pot
here have made it one big fruit salad of truly indiscernible results. If
only 3.8% of the patients in this study underwent oophorectomy, why not
eliminate them from the final numbers to simply clarify the muddy waters
therein? The authors had little problem eliminating other participants at
various stages of the study for a host of questionable reasons -- at least
the elimination of these 3.8% wouldn't have been even remotely
questionable, given the role of the ovaries in sexual function! More
importantly, this oversight by the authors is clearly indicative of
researchers treading into female sexual function waters they know little
to nothing about and have made ill attempt to even comprehend the
significance of the presence or lack thererof ovaries. I simply would
have expected MORE from the BMJ in their choice of publication on this
matter.

Approximately 25% of all the women who contact our organization for
information have chosen hysterectomy or already undergone hysterectomy as
a treatment option. We support these women as we support ALL women who
contact us for information on their medical condition and/or treatment
options currently available. The information we provide is based in
science (what little there is on women's reproductive disease/treatments!)
and current medical publications appearing in peer reviewed journals. I
would trust that information to be of sound quality. When it isn't, I
feel it is my duty to speak out against it and demand higher quality in
study, review, and publication. Accepting studies of questionable value
as "adding to our body of knowledge" is, well, unacceptable to me.

BTW, the Carlson studies you cite bear no relevance to comparative
sexual function outcomes in hysterectomy type.

Carla Dionne

Competing interests:
None declared

To quote the study "In the Netherlands, 32% of women will need
hysterectomy during their lifetime." This is an incredibly high number of
women about 1 in 3. I find it difficult to believe Roovers when he states
that the women in his study were only hysterectomised after other
treatments failed. Perhaps he should state exactly what diseases the women
were suffering from and what treatments they tried. It would be
interesting to see how many fibroid sufferers for example had previously
been offered myomectomy, hysterescopic resection, endometrial ablation or
uterine fibroid embolisation. Quite apart from anything else, these huge
numbers of hysterectomies are costing tne Dutch Health System a lot of
money.

Dr Parker's comment about experts in the field of female sexuality is
very interesting. It could be argued that gynecologists are not in fact
experts in this field at all and should not be conducting this kind of
study.

I do not understand the comments about "problems" and "pleasure".
There are complex psychological mechanisms involved here. It is very
difficult for people to admit that they don't enjoy sex, it is like
admitting failure given the messages sent by the media that we should all
be having great sex lives. Also, for some women, admitting they don't
enjoy sex would be tantamount to being disloyal to their spouses.
Hysterectomy consent forms often contain the statment that the operation
will not affect one's experience of sex. So women feel that they must be
imagining it if they have problems. I am sure their "pleasure" would be
even greater if they did not have the "problems".

I looked at Roovers book about hysterectomy. I too find it sad that
he has poured time and resources into studying hysterectomy instead of
less invasive and less expensive ways of treating what are after all,
benign diseases. It is probably a comment on Dutch gyaecologists in
general. I note that no Dutch gynaecologists have commented here on the
study.

Victoria Norton

Competing interests:
None declared

It would appear many of those who have submitted rapid responses have
misunderstood the intention of the study, the measurements used, and the
author's conclusions. "Sexual problems" and "sexual pleasure" are two
SEPARATE measurements. From the article:

"The first 16 questions concerned the general perception of the
patient's own sexuality and frequency of sexual activity. The next 18
questions concerned different types of problems during sexual activity."

Women had fewer sexual "problems" after the surgery. While some women
had new sexual problems after the surgery, the results of the study do
indeed indicate that "sexual PLEASURE significantly improved in all
patients". This is not an incorrect or misleading conclusion. Physical
sexual function (orgasm, lubrication, etc.), and experience of sexual
PLEASURE or satisfaction, are two very different things, in women.

For various reasons, being in a "monogamous, stable (at least one
year) heterosexual relationship" is a common inclusion criterion in
studies of female sexual dysfunction. This criterion is NOT meant to imply
that women who are not in a monogamous relationship are any less worthy of
study.

Competing interests:
None declared