Over 2600 women who believed that they may have endometriosis, completed a symptom questionnaire on the endometriosis page of the Clinic 66 website. And the results were truly ‘devastating’!
This 4 min presentation highlights the sad and quite disturbing aggregated results of the questionnaire.
Asking the right questions
The questionnaire was designed to have the participant answer many of the questions that a trained specialised women's sexual health GP would ask when exploring a possible endometriosis or adenomyosis prognosis.
Looking at the aggregated data and scanning the individual submissions (without actually speaking to all of them), it would appear that a significantly large percentage of the 2600 were ‘likely’ suffering with endometriosis, while a good portion presented characteristics more in line with adenomyosis.
Overwhelmingly, what came through loud and clear from the submissions is the heartbreaking reality that many of these women feel helpless, hopeless and are not receiving the answers and the professional care they need. Many women reported feeling that they were being ignored and discarded by their healthcare provider.
"On behalf of our profession and as passionate women’s sexual health GPs, we find this absolutely unacceptable and we're out to change the status quo!"
Making a Noise
Through the questionnaire, Clinic 66 received many enquiries from women all over Australia and around the world who are desperately seeking help.
So as a starting point, and appropriately timed to coincide with the end of Endometriosis Awareness Month and the start of Adenomyosis Awareness Month, Clinic 66 created an eye-opening graphical presentation of the aggregated results from 2600 quiz responses as a means to ‘shout out their collective pain’.
According to Dr Emma Boulton, Director of Clinic 66, “too many women suffer unnecessarily with these ‘secret ladies pains’, which is completely unnecessary. Our aim when creating this dramatic but accurate survey results story (above) is to reach out to some of those 1 in 7 Australian women who may have endo or adeno and say ‘You’re not alone. We care, we understand, we know where to look, what to look for and how to help! And we can start the ball rolling with a telehealth appointment - so we can reach you and hear you wherever you are... no need to come into the clinic.”
Offering a solution via TeleHealth
Endometriosis and Adenomyosis are not “life threatening” conditions, but both can cause chronic pain and devastating debilitation.
Unfortunately the sad fact is that it usually takes many years for women suffering with either of these conditions to be diagnosed, which means that it can also take years to access any effective treatment.
"Too often, women are misled with diagnoses of anxiety, constipation, cystitis or irritable bowel syndrome, when in fact they have a treatable condition which will not get better with dietary modification or mindfulness,"
“Unfortunately not all GPs understand endometriosis and getting real help can be a postcode lottery. So Clinic 66 is now extending their endometriosis and adenomyosis expertise via telehealth consultation to broaden their reach.
"At present, we can only assist women who speak English, but we can certainly assist those who seek our help from all over and also outside Australia.
"And if the patient has physically been to the clinic within the last 12 months, they are also eligible for the standard Medicare rebate.” said Dr Boulton.
What are Endometriosis and Adenomyosis?
Endometriosis and adenomyosis are two different but related conditions which cause pelvic pain and menstruation-related suffering in women. They may be present together or separately, but both conditions occur when the lining (endometrium) of the uterus inhabits places in a woman’s body where it shouldn't be.
Typically, the symptoms of both endometriosis and adenomyosis are in tune with a woman’s menstrual cycle. This is because the underlying problem is that of “split cells”, where the cells that normally line the uterus and respond to hormones of a normal ovulatory cycle, continue to behave that way ie. they engorge and bleed on a monthly basis. However, when these cells bleed in tiny amounts outside of the uterus, they cause irritation and scarring.
These “endometrial deposits” are typically in the pelvic region (therefore causing pelvic pain and usually worse during menstruation) but can occur anywhere in the body including the brain and lung.
What causes endometriosis and why did I get it?
Endometriosis is caused when endometrial cells (lining of the uterus) “seed” themselves outside of the uterus. These small collections of cells are often “stuck” to anatomy in the pelvis such as the bowel, bladder or fallopian tube. These cells behave as if they were still lining the uterus, and respond to hormones which cause them to engorge with blood every month and bleed.
However, as these collections of cells are outside the uterus, the blood can't get out of the body as it would with a normal period or menses. It gets trapped and causes irritation, scarring and inflammation.
Endometriosis typically occurs in younger women, but we don't know why some women get it and others don't. Current research estimates that I in 7 Australian women have endometriosis.
Classic symptoms of endometriosis are painful menstruation (sometimes excruciating). If the bladder or bowel is involved, then pain may arise from those areas. Other symptoms can be vague and are often misdiagnosed.
What causes adenomyosis and why did I get it?
Adenomyosis is similar to endometriosis, in that the secretory endometrial cells are no longer lining the uterus, but in adenomyosis, they are locked in more deeply, within the muscle layers of the uterus. The cells still bleed every month, but as with endometriosis, this blood cannot exit the body and little pockets of old blood build up within the muscle layers of the uterus.
Women who suffer with adenomyosis are usually older, get heavy periods which are often painful, and often have an enlarged uterus. They may also be anaemic or have low iron levels due to increased blood loss.
It is thought that damage to the uterus can cause adenomyosis e.g. caesarean section for childbirth. However, women who have never had any surgery to their uterus can still suffer from adenomyosis.
How are endometriosis and adenomyosis diagnosed?
The first thing your doctor will do is take a history. They may also examine you and order some investigations, however, it is common for both the examination and investigations to be normal - especially with endometriosis. Unfortunately there are no blood tests or swabs which diagnose endometriosis and adenomyosis - though women with heavy periods may be anaemic or have low iron (which can be detected on a blood test).
The “gold standard” for diagnosis of endometriosis comes with laparoscopy, when a fibre optic camera inspects the inside of the pelvis. However, a laparoscopy requires a referral to a surgeon, a general anaesthetic and an overnight stay in hospital. As endometriosis is considered non urgent and non life threatening, your doctor may be reluctant to refer you for a laparoscopy.
Endometriosis can sometimes be diagnosed with a special ultrasound examination but these are rarely available. As symptoms of endometriosis can be vague, it is common for women to be fobbed off and underdiagnosed, especially when conventional tests are negative.
Fortunately adenomyosis is more easily diagnosed with an ultrasound examination, although like the investigation of endometriosis, imaging tests may be normal. About 50% of cases of adenomyosis can be diagnosed by ultrasound and an MRI scan may also be useful.
What treatments are available?
Symptomatic treatments include heat, yoga, and pain killers. However, these do not treat the underlying cause.
Fortunately endometriosis often responds well to simple hormone treatment such as the contraceptive pill or hormonal IUD. Your doctor can try these treatments, even if endometriosis has not been formally diagnosed. It is an example of what is called “empirical treatment”. Hormonal treatments are unlikely to cause serious side effects, though you may need to try different types to find the best one for you.
Adenomyosis responds very well to a hormonal IUD which sits inside the uterus, releasing a hormone which controls the adenomyosis. The IUD can be changed every 5 years until menopause. There is also a technique called “uterine artery embolisation” which is controversial, but can help some women.
The last option for endometriosis and adenomyosis is surgery, and when other treatment options have not worked, it can be life changing. Endometriosis surgery can include removal of the internal scarring (usually done via laparoscopy) and older women with adenomyosis may opt for a hysterectomy if they no longer want or need their uterus .
The Good news
Both adenomyosis and endometriosis generally get better after menopause, as the hormones which support reproduction are no longer produced. This means that the endometrial lining cells die off and don't cause problems any more. However it is common for women to have symptoms for years leading up to menopause, which can really affect their quality of life and mental health.
If you’re reading this article and intuitively knowing that the pain you’re experiencing and enduring is just not normal and certainly not necessary, please don't feel that you have to put up with it until menopause. Do something now!