What is endometriosis ?
Endometrioisis is a taboo illness, still largely overlooked, under-diagnosed and the treatment protocol, on the whole, is poor
This very common illness is of a transdisciplinary nature, affecting several organs and it is often responsible for wide-ranging, disabling pain on a daily basis.
Affecting women who are of reproductive age, from the first periods up to the menopause, this benign but chronic illness necessitates a long term treatment protocol.
Endometriosis features since 2004 on the list of 100 targets to be reached by public health authorities and yet the average time it takes to diagnose has remained unchanged at 7 to 9 years.
Endometriosis in numbers
20-50% of women have some degree of infertility
30-40% of women with this illness have some degree of infertility
25-70% of women and 19-47% of all teenage women have some chronic pelvic pain
70% of women with this illness have disabling pain
70% have painful sexual relations
50-60% see a reduction in their sporting activities, have trouble with their appetite or sleeping
30% see their normal routine disrupted
20% see their mobility affected
Symptoms which should alert
> Pain & Infertility
The first symptoms of endometriosis are dysmenohrrea (painful periods), deep dyspareunia (painful sexual intercourse) and infertility. Most of these symptoms are not considered to be pathological phenomena either by the general public or by health professionals. This leads to late diagnosis, either because the patient does not consult or because the health professional doesn’t consider these symptoms to be abnormal. Moreover, the symptoms may be multiple and appear in several areas (ovaries, bladder, intestine…) and provoke great discomfort or pain, without the intensity being linked to the extent of illness.
Cultural factors and taboos have impacted the way women perceive this illness which is exclusively feminine. It can also generate an attitude of avoidance and social isolation. All this leads to the fact that women with poor treatment protocol of endometriosis can be in great psychological and moral distress.
The diagnostic and therapeutic developments are not widely known by practising professionals. The clinical examination and imagery, allowing the diagnosis this illness, are very specific and not well known. As well, the multiplicity of symptoms means that many medical specialities may be involved in the diagnosis, which complicates even more.
Amongst the symptoms which should alert you:
pain linked to periods which becomes a real social handicap, which may even stop you going to work: painful periods can be remedied
sexual intercourse which is deeply painful
difficulties in urinating, traces of blood in the urine or stools or pain when there are bowel movements, which may or may not be at the same time as your period
less characteristic chronic pain might also occur in the renal pelvis, the stomach, the lumbar region and sometimes along the sciatic nerve.
What is Endometriosis ?
Endometriosis is a common but chronic illness, affecting around 10 to 20 % of all women. It is characterized by the growth of uterine tissue (or endometrial tissue) outside the uterine cavity. The abnormal location for this tissue manifests itself by lesions comprising cells, which have the same characteristics as those of the uterine lining. It is little known by the public at large as more than two thirds of women have never heard of this illness.
There are several types of endometriosis.
In the majority of cases the endometrium migrates in the uterine muscle tissue (adenomyosis) and attaches itself onto the ovary thus creating a cyst (endometrioma).
In certain more serious cases, the endometrium will begin to develop in the form of nodules and will reach other organs such as the rectum, colon, bladder, perhaps even the diaphragm or the pelvic wall.
Very rarely and as an anecdote, there have been cases where these tissues work themselves up the body via the circulatory system, towards the respiratory system and the ophthalmic area.
The lesions thus created are dependent on the hormonal secretion of oestrogen by the ovaries. This is why endometriosis lasts only from puberty to menopause. It is also the reason why its symptomatic treatment can require halting the hormonal activity of the ovaries.
Endometriosis is an illness with non-negligible consequences from both a medical but also a psychological point of view
It is a very treatable illness, as long as the diagnosis is prompt, the more the endometriosis spreads, the harder it is to treat
How to get a diagnosis?
When consulting, an endometriosis diagnosis is, at the outset, based on a precise and mindful series of questions. First of all there is a complete clinical examination using specific imagery by a radiologist not just specialised in female imagery, but who also has good knowledge and experience of endometriosis.
Examination of the genital tract using a speculum, can sometimes enable the identification of blueish or reddish coloured cysts on the cervix or to the back of this ( in the posterior fornix).
The vaginal examination, if normal in half of all cases, must search for any meaningful signs. It must also eliminate any neuropathic type of pain (pudendal nerve neuralgia or of the sacrosciatic ligament).
Hysterosalpingogram (Radiograph of the uterus and of the fallopian tubes) is only of interest in evaluating the permeability of the fallopian tubes in case of infertility.
The endorectal ultrasound no longer exists and has been replaced by the
endovaginal ultrasound, which has greater performance and is much better tolerated. As for endoscopic procedures, like the colonoscopy for the colon and the cystoscopy for the bladder, they are of little use as the endometriosis is extrinsically situated on the organ walls and cannot be seen.
The medical imagery is key for the diagnosis:
The pelvic transvaginal ultrasound is the first examination to be carried out. This is the technique of choice for diagnosis and for mapping out precisely the endometriosis, including any in the digestive tracts. It is the only examination, prior to the laparoscopy, which can confirm superficial damage, around the ovaries and the uterus.
Pelvic MRI scan is also a very good procedure, but less effective than the ultrasound.
Colonoscopy is a vital procedure in the event of clinical suspicion and/or proof by ultrasound that the digestive organs are affected, and there is need to precisely map out digestive tract endometrial lesions, which, in 30-50% of cases are multiple. The colonoscopy is carried out on the abdominal-pelvic region after filling the colon with water using a cannula placed in the rectum. This procedure is well tolerated and does not require any particular preparation.
Lastly a uroscan, which consists of a possible and later second more specific scan, after being injected with iodine, of any traces of endometriosis in the bladder and/or the urethra.
Rectal Echoendoscopy performed by a specialist gastroenterologist, is the last examination to be conducted if a surgery is deemed to be necessary and if the MRI scan, the ultrasound or clinical examination leads to a suspicion that the digestive tract is affected. It may also be recommended in the event of radio-clinical discrepancies. For optimal results, it should be done under general anesthetic. It allows the health professional to very precisely quantify the spread of the disease to the digestive tract in the rectum and sigmoid colon up to 40 cms from the anal verge. It is then possible to conclude and best predict the risk of needing to perform a stoma and to optimally prepare for surgery, which will consist in a coloprotectomy (removal of part of the sigmoid colon and rectum).
Different types of endometriosis
After imagery examinations it is possible to classify endometriosis into different types:
Adenomyosis: the endometriosis is localized in the uterine muscle
Superficial endometriosis: localized only on the peritoneum (and difficult to see even with imagery)
Extensive endometriosis: with or without it affecting the digestive tract
Its role is to reduce symptoms, limit the spread of the illness, to prevent it reoccurring after surgery and to enable pregnancy. The treatment is drug based or a combination of drugs and surgery. It takes into account the gravity of the symptoms, their cyclical or permanent character, the existence and type of digestive infiltration, quality of life, age, the wish for pregnancy.
The drug based treatment mixes:
Hormone therapy, oestro-progestogen or progestogen only (macro or micro, or even the hormonal IUD). Taking these continually enables a therapeutic amenorrhea with no impairment thus blocking the spread of the illness.
Analgesic treatment: the frequency of pain in the case of endometriosis is important although there are no precise figures to hand. The treatment protocol may associate hormone therapy, surgery and more specific treatments depending on the pain mechanisms. The pain management protocol is very multi-directional and must depend on the individual and adapted to each patient.
Physiopathological and anatomical disorders are frequent.
First of all there is an inflammatory reaction, particularly during periods and the pain may justify taking anti-inflammatories. However, these types of treatment are not very useful over the long term because the inflammation is not the predominant mechanism.
The principle cause of pain is an irritation of “little” nerves caused by the endometriosis. This is called ‘’neuropathic pain”. It manifests itself by continual shooting pains and/or throbbing pains, which are often violent, or like stabbing pains. In this case common analgesics, in particular opioids (morphine derivatives) have little, or no effect. Better to use less well-known treatments like antiepileptics or certain antidepressants with analgesic properties. The latter are not chosen for their antidepressant properties but for their ability to act as a independent analgesic.
The third reason for pain, which often offers an explanation for the loco-regional amplification (constipation, lower back pain…), is the pelvic tissue immobility caused by the pain itself. There is, therefore, a real vicious circle between the initial “nervous” pain and its consequences on the tissue immobility, which is itself painful. So a vicious circle is established on a loco-regional basis. This is why non-manipulative manual therapies such as fascia therapy (osteopathic technique) may help.
In conclusion, the pain management protocol is composed of drug therapies and non-drug therapies. The non-drug therapies are often crucial. The focus on the body with manual techniques often helps to reduce the local infection of the pelvic region. Moreover, acupuncture or mesotherapy can help to stimulate the defence mechanisms against pain and can be proposed if drug treatments are not, by themselves, sufficient.
Lastly, mental components (anxiety, stress…) negatively affect a patient’s perception, even if they are not the source of pain. This mental influence is not to be neglected. Handling this aspect is an integral part of the whole treatment plan. It prevents the worsening of pain and several approaches are possible. Firstly, psychotherapy, but there are other interesting techniques like relaxation, sophrology or hypnosis which enable the patient to cope much better mentally and physically.
The role of surgery
Surgery is necessary in 35-40% of all cases.
Surgery is carried out under general anesthetic in the operating theatre, with, if necessary, the help of robotics. The aim is to be able to remove all the endometrial damage, the only guarantee of obtaining a significant or complete improvement in 85% of the cases. In the most severe cases, the surgery is long, requires several surgeons and a stay in hospital for 3 to 7 days. Sometimes the removal of a lesion on the rectal digestive tract requires a stoma for 1 to 2 months. It is absolutely necessary to prioritize mini invasive surgery (laparoscopy) in order to facilitate recovery and minimize adhesions.
This will mean that pregnancy can be achieved in 50% of cases, even 70% when associating with fertility treatments.
In the absence of any desire for pregnancy, surgery should be followed by hormone therapy.
Endometriosis can be a contributing factor to a couple’s fertility problems, because its localization is in the ovaries, peritoneum, Fallopian tubes or uterus (adenomyosis).
After a fertility check up, depending on both masculine and feminine factors (including the degree of endometriosis) several types of fertility treatments may be proposed. The most common are artificial insemination and in vitro fertilization (IVF), or by micro-injection of sperm directly into the ovum (ICSI).
Currently, in the case of severe endometriosis, or in the event of masculine factors favouring in vitro fertilization, the choice is between a long or “ultra long” protocol. The blocking Gn-RH agonist is started before stimulation.
This increases chances of pregnancy. This treatment, to be started as soon as possible, is recommended by the College National de Gynécologues-Obstétriciens. The rate of pregnancy and children after one or several courses of fertility treatments is very variable according to medical literature. The risk of infection post injection is increased by the presence of endometriosis.
The preservation of fertility is of the utmost importance in the case of severe endometriosis, especially for those with bilateral ovaries affected.
> not te be neglected
With endometriosis, women are confronted by an illness causing physical pain and mental suffering. The symptoms of this disease affect a woman at the heart of her femininity and can alter the rapport with her body and her quality of life: pain, fertility problems, disruption to her sex life, impact on her social and professional life.
The psychological repercussions of the illness can be important and can require support. The latter offers those women who request it, space to talk and listen, allowing them to find the resources they need and to take care of themselves on a psychological level.
With this objective in mind, the psychologist can see patients for a consultation. He/she may also suggest using sophrology as well on an individual basis, particularly before any surgical intervention. This psycho-physical approach reduces stress, anxiety and relieves tension.
Bodily sensations, relaxation, breathing and movement will be gently explored in order to connect once more with vitality and work towards an improved psychosomatic harmony. This practice, preceeded and followed by a discussion, will mean that each woman will find support and strength from the group.
Working as a multi-disciplinary team
RESENDO is a community-hospital network created 5th May 2015 as an association. The network’s objective is to ensure a high quality treatment protocol for women suffering from endometriosis, by assembling a network across the country and by coordinating different participants. The network members are founding members, public or private establishments, health centres, independent professions, user associations, medico-social help centres, other networks, and other learned institutions. The founding members are directly involved themselves in the endometriosis treatment protocol and are representative of the multi-disciplinary approach needed to accompany these female patients. This network also involves the Institut Mutualiste Montsouris, which provides treatment for women with sterility issues, helping them if required with fertility treatments.
The treatment pathway is organized so that these women can be looked after by a benchmark service.
The organization of Multi-Disciplinary Consultative meetings has been set up, providing a dynamic interaction with community health professionals, with the latter being invited to participate. These meetings are planned every 6-7 weeks, and are an opportunity both to exchange information and to learn.
Multi-Disciplinary Consultative Meetings or RCP :
These are an opportunity to exchange information in order to develop a multi-disciplinary treatment protocol. The meetings assemble different specialists: surgeons, radiologists, pain management specialists, psychologists, gastroenterologists, rheumatologists, pulmonologists, fertility specialists, who will all study together the medical, surgical
and psychological aspects, taking into account the different issues for the patient. It also helps to optimize the treatment protocol by combining meetings and thus reducing waiting times.
In this way the RCP enable patients to benefit from a customized treatment protocol, adapted to their needs.