Endometriosis
BMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c2661 (Published 10 June 2010) Cite this as: BMJ 2010;340:c2661
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I have experienced the symptoms of Endometriosis from the age of 11
and my second period. I am a member of a number of patient self help
groups including the international Endometriosis Association. In contrast
to the experts finding the early onset of Endometriosis to be rare it
appears to be more the norm in the patient associations. Perhaps our
learned friends are confusing late diagnosis with late onset because this
also is the norm according to the experience of many Endometriosis
association members. The delay between the onset of symptoms and diagnosis
is averaging about a decade. I myself had to wait 28 yrs for an accurate
diagnosis despite undergoing earlier infertility investigations and was
only dignosed following Laparotomy for recurring episodes of accute
abdomen caused by ovarian Endometrioma torsion.
Whatever the causes of Endometriosis the treatments currently
available give at best a temporary reprieve for the patient for the
duration of the course of treatment.
As fot the suggestion that the pain of Endometriosis can be treated
with the use of Neuropathic agents many of these have severe side effects
and many patients are unable to tolerate these drugs. I myself took Lyrica
for one week, the side effects were intolerable and it was completely
ineffective for the pain of Endometriosis.
I cant help feeling reading the input of Medics to this forum that
they completely underestimate the impact of Endometriosis on the patient
population and that they are more impacted by their own feelings of
impotence at their obvious failures in ameloriating patients suffering.
Dr's are resorting to the age old habit of blaming the patient when they
do no't duly respond to their treatment as they predict.
The sooner that Dr's realise that Endometriosis is often an ilness of
early onset and if they begin treatment early they may be able to
ameliorate much of the ongoing suffering of their patients the better the
outcome for us all.
Competing interests:
None declared
Competing interests: No competing interests
Onset of pelvic pain at, or shortly after, the menarche as described
by Julie Harvey is uncommon in a gynaecology clinic, though Ian Warwick's
therapeutic difficulties are all too frequent in the contemporary
management of pelvic pain with, or without, endometriosis.
Colleagues in Sydney, Hangzhou, Leuven and London have independently
described different patterns of aberrant autonomic reinnervation in the
uterine isthmus, cervix, vagina, peritoneum and uterosacral ligaments in
women with chronic pelvic pain with, or without, endometriosis (1). Some
deposits of ectopic endometrium carry nerves though they are rare. Most
gynaecological pain arises from the consequences of injuries to pelvic
nerves sustained in labour (2).
In nulliparous women injuries to uterine nerves arises from physical
efforts during defaecation, surgery, or, direct injury. Injuries to
uterine nerves result in loss of fundocervical polarity and retrograde
menstruation (3). Ectopic endometrium attaches to injuries to peritoneal
surfaces and uterosacral ligaments (that may be atrophic or hypertrophied
at laparoscopy depending on the aetiology of prior injury) (1). With an
onset of pain at the menarche, the neural injury may occur in infancy or
early childhood associated with infant diets, toilet training, or,
intrinsic bowel problems. Changes in pelvic blood flow may cause pain by
allodynic-hyperalgesic mechanisms. Treatment requires reductions in pelvic
blood flow with OCP, GnRH analogues or aromatase inhibitors, and, anti-
neuropathic agents e.g. imipramine, paroxetine, gabapentin, pregabalin,
alone, or in combination.
Some of the frustration - though not the pain - may lift for both
doctor and patient if a clear source for the pain can be identified. Most
"alternative" treatments are justified following injuries to autonomic
nerves. Many other Western diseases may arise from similar injuries to the
cardiac, coeliac and pelvic plexi(4).
(1) Quinn M.
Endometriosis: the elusive epiphenomenon.
J Obstet Gynaecol. 2009 Oct;29(7):590-3. PubMed PMID: 19757260.
(2) Anaf V, Simon P, El Nakadi I, Fayt I, Simonart T, Buxant F, Noel
JC.
Hyperalgesia, nerve infiltration and nerve growth factor expression in
deep adenomyotic nodules, peritoneal and ovarian endometriosis.
Hum Reprod. 2002, July;17(7):1895-900. PubMed PMID: 12093857.
(3) Atwal GSS, Duplessis D, Armstrong G, Slade R, Quinn M.
Uterine innervation after hysterectomy for chronic pelvic pain with, or
without, endometriosis.
Am J Obstet Gynecol. 2005 Nov;193(5):1650-5. PubMed PMID: 16260205.
(4) Quinn M
Autonomic denervation and the origins of chronic Western diseases.
Med Hypotheses. 2010 May;74(5):937-44.PMID: 20022182
Competing interests:
None declared
Competing interests: No competing interests
Dear editor,
I found the article and the responses very interesting. While I was going
through the article I realized that a vast majority of females have
actually never heard of endometriosis! So i decided to give a brief and
very compact piece of information.
There are numerous theories how this condition develops, the one which is
mostly accpeted is the "Spill of endometrium". In this theory it is
described as menstural blood flows from the uterine cavity, pushed through
the fallopian tubes and into the peritoneal cavity, and fragments of
endometrium fall into the pouch of douglas and on the ovary, and may implant
there.
Peak age is between 25-40 years of age.
Endometriosis is very closely linked with primary infertility.
The patient may or may not be symptomatic, depending on the site of
implantation. Dysmenorrhoea is one of the major presenting features, and some
may suffer from dyspaeunia. Pain in abdomen could be a presenting feature
too. Sometimes there could be cysts as large as can be felt per abdomen.
As in most cases diagnosis is made upon history, but in some cases
laparoscopy and examination under anaesthesia has to be done.
As to management i would say any pain killer will do but also if one can
should try to get pregnant.
I would say hormonal treatment is very effective, but if no positive
results are received then treatment should be done surgically.
Competing interests:
None declared
Competing interests: No competing interests
Endometriosis has been identified as a disease in young women since
the
beginning of last century. Thomas Cullen described the microscopic
criteria
for the diagnosis of the disease. However, the desperation of the
clinician
facing the management of endometriosis was illustrated when Joe Meigs in
1953 recommended early and frequent childbearing as prophylaxis. He even
exhorted patients to subsidize their sons and daughters so that this might
be
financially feasable.
While for many patients Meigs' proposal was not practical, the idea
led Robert
Kistner to propose in 1958 a substitute by an induced state of
"pseudopregnancy". He postulated that the improvement noted in
endometriosis during and after pregnancy is due to decidualization that
results in necrose and elimination of the early superficial implants. It
is now
well established that in the majority of women with endometriosis the
symptoms of endometriosis start at young age after the menarche and that
at
laparoscopy in adolescents subtle superficial lesions are found.
Pseudopregnancy regimens with the pill for up to 7 months produce as
well
amenorrhea as a decidual reaction with reduction of superficial active
endometriosis. There is need for more endometriosis awareness in
adolescents as in the absence of genital tract abnormalities there may be
a
window of opportunity for the hormonal prevention of severe endometriosis.
It is unfortunate that, although extensively utilized, estrogen-
progestin
combinations have not been properly tested for the early stages of
endometriosis in adolescents. When medication is indicated, there is no
reason why the first choice could not be a pseudopregnancy regimen of
combined oral contraceptives rather than strong analgesics or cyclic oral
contraceptives. In essence, the first choice treatment of endometriosis
in
adolescents should be early 'symptom-oriented" rather than "lesion-
oriented" management by laparoscopy and surgery.
Competing interests:
None declared
Competing interests: No competing interests
Endometriosis: Challenging moments
Dear Editor,
As I read, your article I traveled back in time to my youthful days.
Endometriosis was one of my major problems. At that point it was period
pain with a difference. As a student, I remembered hoping and praying for
no scheduled examinations during the last week of any month. Worse yet, it
was business as usual since it was an accepted phenomenon by both family
and friends. They knew family members with the same problem and that was a
norm. As a teenager I remembered I was sitting in church staring at the
preacher while sinking in the abyss of my pains. The next moment my gaze
focused on faces looking down at me in the sick bay. Heaven’s know what I
felt when I heard that I had fainted and was lifted out by my hands and
feet by the male deacons!
My big challenge came when I was being interviewed for Nursing
School. I clearly remembered being told by successful applicants “ Do not
admit that you have period pains because you won’t be accepted” Well, I
eventually got in but those days did come. Fortunately for me I had a
group who knew how to cover up for their friends, and to play nurse with
hot water applications and ginger or mint tea. I later discovered that the
severity of the pain would lessen when I took paracetomols twice daily for
at least two days before the commencement of the period. But, there were
times when I had to resort to the usual ‘body programming’ to endure the
ordeal. I wasn’t the only sufferer. There were many in my batch and the
senior batch. One incident stood out clearly for all of us. During one of
the class sessions a senior student experienced such excruciating pains
that she vomited and swallowed back the vomitus. She was not going to ask
permission to exit the room because of fear of being thrown out of Nursing
School. Whether it would be so or not, I never know. No one dared to take
that chance.
Tradition it seems has associated this complaint with some
‘controllable psychological display’. I am happy to see that new light is
dawning on the reality of this parasitic illness. It certainly has robbed
many of us of our social, academic and personal dignity. For me, I had my
last battle with in it while completing a major university examination. I
left that room and was admitted to the hospital. I later consented to have
an hysterectomy. That was the end of that piece of anatomy and of course
physiology. I wish however to see more research in this area especially
among those of us medical personnel who have walked the path.
Hilda Ming
Director, Nursing Education
University Hospital of the West Indies, Mona.
Jamaica
gillian942002@yahoo.com
Competing interests:
None declared
Competing interests: No competing interests
Surviving endometriosis my way
Dear Editor,
It is with great interest mixed with a tinge of sadness that I read the
named article of endometriosis; it was almost uncanny to see my life
struggles with this condition chronicled by someone else. Endometriosis is
a disorder that has the propensity to affect a woman’s life to enormous
proportions. It affects the uterus; which is seen as a prized possession
as it allows for the implantation, growth and sustenance of life.
Unfortunately my fight with endometriosis was very debilitating and it so
overwhelming it ended with the surgical removal of my uterus in my
productive years.
As I read the article I noted with much interest the author’s conclusion
regarding the various therapy undertaken with no sustainable benefit. I
too, from my early years utilized the various treatment modalities with
minimal relief which led me to accept that this pain and suffering was
inevitable each month because the process of having a period it is a part
of a woman’s life. As a registered nurse I know that effective pain
management is critical to recovery and my search for pain relief led me to
seek out alternative remedies to supplement the traditional
pharmacological options provided by my physicians.
Over the years treatment modalities have evolved in the treatment of
endometriosis however the surgical option i.e. hysterectomy, although
final, is at present the only 100% sure effective way to treat this
debilitating condition. Yes we can agree that the choice of treatment is
individualized to fit the woman’s age, severity of symptoms experienced
and fertility issues however for some women no matter the pain management
therapy, hormonal treatment and surgical quick fixes there is much loss
work hours, strain on intimate relationships, little or no social life and
unexpected embarrassing moments. Amidst the emerging various treatment
modalities there is one that promises much relief if the implementation is
successful. An experimental study being conducted shows that some
medicinal herbs and their active components exhibit cytokine-suppressive,
COX-2-inhibiting, antioxidant, sedative and pain-alleviating properties.
Each of these mechanisms of action is predicted to have salutary effects
in endometriosis. (Wieser et al, 2007)
Endometriosis continues to be a big problem, many women struggle daily
with the debilitating symptoms that prevents them from fulfilling their
dreams of finishing an education, to maintain a career, to have children -
and sometimes to maintain relationships. In addition there are significant
socio-economic impacts due to the disease. In the interim we struggle to
find the best fit therapy to help women with this condition to have a
relatively normal life. This article has given a voice to many sufferers
of endometriosis, it is important to know that no one woman is alone in
this journey. However it would be encouraging for more individual cases to
be highlighted that speaks about methods of management for survival.
Reference
Wieser F., Cohen M., Gaeddert A., Yu J, Burks-Wicks C, Berga SL, Taylor
(2007)
Human Reproduction Update: Evolution of medical treatment for
endometriosis: back to the roots. 13(5):487-99
Competing interests:
None declared
Competing interests: No competing interests
Impossible to ignore Endometriosis!
Dear Mrs Harvey,
Endometriosis has a prevalence of about 10% in the
U.K.
This means 1 in every 10 women! It is a common disease
with well established international diagnostic and
therapeutic protocols. No medical doctor can ignore
endometriosis, delay laparoscopy for assessment, allow
disease to spread and increase in stage, without violating
the standards of “Good Medical Practice”!
Letting endometriosis reach stages 3 and 4 means
more pain and less fertility.
You have lost your job, your quality of life, part
of your sexual life due to dyspareunia and, maybe, your
fertility, all because some
medical doctors, in the past, ignored your condition and
delayed definitive laparoscopic diagnosis for 10 years!
In my Country these doctors would be severely
punished and you would be entitled to a substantial
indemnity, should you decide to bring them to a Court of Law
to face their ignorance and poor decision-making.
I get very upset in thinking that other women could
be suffering what you have suffered, simply because such
medical doctors are still practising.
Competing interests:
None declared
Competing interests: No competing interests