A 2017 EndoStats survey says 96 per cent of endometriosis is diagnosed in the reproductive area, urinary 49 per cent, digestive 55 per cent, and thoracic 14 per cent.
In all cases, it says there is a 7-10 year delay in diagnosis. Sixty-eight per cent of the cases were misdiagnosed for something else.
The symptoms of endometriosis are not specific to the disease but they may be suggestive; some of them are very vague.
Painful periods are socialised to be normal by the general public and sometimes unfortunately by medical professionals. Women may be dismissed and told this is normal.
The diagnosis, however, is not as straightforward because it requires a surgical operation called laparoscopic surgery.
In dire circumstances, one would require a laparotomy.
A laparoscopy is a surgical procedure in which a fibre-optic instrument is inserted through the abdominal wall to view the organs in the abdomen or permit small-scale surgery, while a laparotomy is a surgical procedure involving a large incision through the abdominal wall to gain access into the abdominal cavity.
A woman may also be put on trial treatment and if symptoms improve, then it would be known to be endometriosis.
It may not be the only condition that responds to this type of treatment, but it points you to that direction.
There is a condition called a chocolate cyst, another form of endometriosis, which can be seen on ultrasound scan and other specialised techniques like magnetic resonance imaging (MRI).
But to make a definite definition, you will need a formal surgery.
Surgery doesn’t cure but it’s one of the many ways to manage endometriosis.
Some mechanisms can be easily cured by surgical procedures while others cannot, leading to pain in some women after operation.
We have deep infiltrating endometriosis, which requires very specialised surgeons, So if you have inadequate removal of endometriosis, then pain could still come back because mechanisms that are not responsive to surgery haven’t been addressed.
About three types of pain come with endometriosis. You could have scarring, which is scar tissue that sticks organs together.
Nerves develop within the scar tissue and continue to transmit the sensation of pain even after removal of the scar.Â
That type of pain is managed completely differently from just doing surgery.
Another form of pain occurs after removal of endometrium tissue. Some of the tissues are so tiny to be seen during surgery and could still cause pain after surgery.
Then there is what we call chronic pain. When pain has been there for long, it tends to change character.
Some things that you would not perceive as pain, such as tracheal pressure, can then cause pain.
Pregnancy can lessen endometriosis-related pain in some women, but it’s not a universal advice.
Some women could be in their adolescent years, some could be past childbirth phase.
We have no way of telling that if you have a child, the symptoms will get better. It is only by looking back if you had a child and you improved.
Pain is the predominant symptom of endometriosis, but there are other signs that occur during times not related to menstrual cycle, such as painful intercourse.
By its own nature of disease progression, the lungs of some women collapse during periods. Some may have seizures or convulsions.
It is important to emphasise that some of the treatment we give for endometriosis could compromise fertility.
So in the course of discussing and choosing options for treatment, all the things that could happen post-treatment should be known to the woman before they go down to choose one route over the other.
We should have information out there, for girls particularly, that menstrual problems are not normal.
They should not be normalised. They should have quick referrals to see the right doctors.
Choosing a treatment option comes down to the individual woman’s needs, depending on symptoms, age and reproductive desires.