What is endometriosis?
Endometriosis (pronounced en-doh-mee-tree-oh-sis) is when tissue similar to the endometrium (the lining of the uterus) grows on organs and structures in the body.
The endometriosis tissue that grows forms superficial patches and lesions in response to reproductive hormones, causing inflammation and adhesions (scar tissue).
There are three types of endometriosis, as well as adenomyosis (endometriosis within the uterus):
Endometrioma - an ovarian cyst
Deeply infiltrating endometriosis (DIE) - lesions at least 5mm deep
Superficial endometriosis - lesions that are less than 5mm deep
Adenomyosis - the lining of the uterus (the endometrium) grows into the muscle tissue of the uterus
Where does endometriosis grow?
ENDOMETRIOSIS IS NOT A MENSTRUAL DISEASE. ENDOMETRIOSIS IS A WHOLE-BODY DISEASE THAT CAN HAPPEN WITH OR WITHOUT A UTERUS.
Endometriosis has been found in every
part of the female human body and in some instances in males. Organs that are close to the uterus are more often affected by endometriosis such as the ovaries, fallopian tubes, pelvic lining, bowel, bladder, rectum, pouch of douglas, and appendix.
Who can have endometriosis?
People of all backgrounds and ages can have endometriosis, including teenagers.
Endometriosis affects those of reproductive age, and can also occur before puberty, post-menopause, and in those who have had their uterus removed.
Rarely, it has been found to affect those assigned male at birth.
Those with endometriosis and/or immune disorders in their family may be more likely to develop endometriosis.
Some people aren't affected too much by endometriosis but a lot of people suffer with severe pain. It is a condition that can get worse over time and with each menstrual period.
Early diagnosis and treatment can help with symptoms.
What are the symptoms?
There are lots of symptoms of endometriosis and you do not need to have all of them to have endometriosis but the more symptoms you have, the more likely you have endometriosis.
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Pain during or around your period that stops you from living your life (dysmenorrhoea)
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Pain in your pelvic region, lower back, or legs
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Pain during or around the time of ovulation
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Pain going to the toilet or if your bladder is full (dysuria)
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Problems with your bowels such as painful bowel movements, a bloated abdomen, constipation, or diarrhoea (often cyclical)
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Constant tiredness (fatigue)
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Depression, mood disturbances, PMS
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Spotting before your period
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Immune system issues - feeling run-down, getting lots of
colds and taking time to recover
IT'S IMPORTANT TO KNOW THE SYMPTOMS OF ENDOMETRIOSIS BECAUSE EARLY DIAGNOSIS AND TREATMENT CAN HELP YOU MANAGE YOUR SYMPTOMS AND MAKE SURE THAT PAIN DOES NOT IMPACT YOUR LIFE.
How can endometriosis affect your life?
Endometriosis can affect people's lives in different ways, symptoms can have an impact on how you live your life.
You may have to take time off of school because of your symptoms and your ability to study and productivity may be impacted by your symptoms.
If you have a part-time job, you may be taking time off sick and your productivity at work impacted.
The relationships you have with others may be affected by endometriosis symptoms.
You may not feel like spending time with your friends and find that your social life is interrupted by your symptoms.
You may not be able to travel because of your symptoms, affecting plans for overseas experiences or moving away for further study or work.
All of these impacts can affect your mental health, causing feelings of depression and anxiety.
EVERYONE EXPERIENCES SYMPTOMS OF ENDOMETRIOSIS AND PAIN DIFFERENTLY
What do you do if you suspect endometriosis?
It's a good idea to track your symptoms for 2-3 months and then talk to your GP about your symptoms.
We have a range of tools that can help you track your symptoms. These tools can help with the conversation with your GP.
The Pathway to Diagnosis
Identify and track your symptoms
Book an appointment with your GP, to talk about the symptoms you have identified, and to get a referral to a gynaecologist that specialises in endometriosis.
Get a referral from your GP to see a gynaecologist that specialises in endometriosis. You can also self-refer to a gynaecologist in private practice (health insurance may cover the cost of this appointment, or you can pay yourself).
Your GP and/or gynaecologist may request a range of tests and imaging to support their diagnosis of endometriosis, or other conditions that may be causing your symptoms
If you want a definitive diagnosis of endometriosis, you can talk with your gynaecologist about having a laparoscopy for diagnosis and excision (removal) if any endometriosis is found.
What will happen at a GP or gynaecologist appointment?
Your GP and/or gynaecologist want to help you so make sure you talk to them about all of your symptoms and how they are impacting your life.
Try not to be embarrassed but if you are, tell your GP/gynaecologist that you feel this way so they can help you feel at ease.
YOU MIGHT WANT TO TAKE SOMEONE WITH YOU TO YOUR APPOINTMENT. THEY CAN HELP YOU TALK TO THE DOCTOR AND ENSURE ALL OF YOUR QUESTIONS ARE ANSWERED.
TALK TO YOU SUPPORT PERSON BEFORE, SHARING WHAT QUESTIONS YOU WANT TO ASK YOUR DOCTOR AND WHAT YOU WANT AT THE END OF THE APPOINTMENT.
What questions could your GP/gynaecologist ask you?
Any questions your GP/gynaecologist asks you is to help figure out what you need, so answer honestly. Here are some questions your doctor may ask:
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What are your symptoms?
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When did they start?
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Do they happen or get worse at certain times?
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What makes them better or worse?
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Do any of your close female relatives suffer with period pain?
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When did you start menstruating?
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What is the date of your most recent period?
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How long do your periods last and what type of flow do you experience?
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What is your menstrual cycle (eg 25 – 30 days or irregular)?
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What medications, or supplements do you take on a regular basis? Have these helped with symptoms? What side effects have you experienced from these?
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Any previous illnesses or operations?
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Do you smoke and/or drink alcohol, and how much and how often?
What should you ask your GP/gynaecologist?
Below are some questions you may want to ask your GP/gynaecologist:
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What do you think is causing my symptoms?
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What treatment options are there?
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What do you recommend for me?
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How will these treatments help?
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How long do you think it will be before this treatment starts to make a difference?
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How long do you expect me to be on this treatment plan?
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What side effects can this treatment cause?
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What if the treatment is unsuccessful?
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Are there any lifestyle changes that might help?
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What do I do if my symptoms don’t improve?
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What will happen if I do nothing?
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Could another condition be causing my pain and period problems?
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What is the timeframe going forward for this treatment plan?
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When should I have a follow-up appointment?
REMEMBER YOUR GP WANTS TO HELP YOU SO ANSWER THEIR QUESTIONS HONESTLY. TRY NOT TO BE EMBARRASSED ABOUT YOUR SYMPTOMS AND IT'S OK IF YOU ARE. TELL YOUR DOCTOR YOU FEEL UNCOMFORTABLE TALKING AND THEY WILL HELP TO PUT YOU AT EASE
What tests and imaging could my GP/gynaecologist request?
There are tests your GP or gynaecologist can order to help with their diagnosis. Understanding the role of these tests may help you to advocate for yourself and keep on the right pathway for a diagnosis, treatement and management plan.
YOU CAN STILL HAVE ENDOMETRIOSIS EVEN IF YOU HAVE A NORMAL PELVIC/VAGINAL EXAMINATION, A CLEAR UTLRASOUND OR A NEGATIVE MRI SCAN.
OFTEN A CLEAR ULTRASOUND MEANT THAT ENDOMETRIOSIS IS LIKELY TO BE THE UNDERLYING CAUSE OF SYMPTOMS BECAUSE NO OTHER CAUSE HAS BEEN FOUND
Pelvic/vaginal examination
Endometriosis nodules can sometimes be felt during a pelvic/vaginal examination or may even be seen by smear-takers.
During a pelvic/abdominal exam, a health professional may also be able to feel an 'adnexal mass' which may indicate a cyst or the presence of adhesions as organs do not move as they should.
Join us in our mission to empower people with endometriosis and improve the lives of thousands in Aotearoa New Zealand
We rely on the support of our community to provide the resources and support that people with endometriosis need. There are many ways to get involved and make a difference, from making a donation to volunteering your time.