Even the women living with endometriosis don’t have all the facts (Picture: Getty Images/iStockphoto)
For many women it takes years to get a diagnosis of endometriosis, but learning the cause of their symptoms is often only the first step in their journey to managing the condition.
After almost three years of intense pelvic and back pain, I was diagnosed with endometriosis, which causes tissue, similar to the lining of the womb, to grow in other places, including on the ovaries and fallopian tubes.
I was diagnosed in November 2021 after a laparoscopy – a keyhole examination of the abdomen where, in some cases, medics will then perform a procedure to remove the endometriosis.
But after leaving the hospital, there was no follow up appointment or check-in. I was given the contraceptive pill – prescribed to endo sufferers as a type of pain management – and sent on my way.
While I knew endometriosis could affect my fertility, I was given no information on fertility treatments, the dangers of surgery, or the types of endometriosis there are.
Because of the limited research around the condition it takes doctors an average of eight years to diagnose a patient. After diagnoses, 72% of women are not given any written information about endometriosis.
Perhaps it’s no surprise then that I’m feeling a little in the dark about exactly how endo will affect my life.
I spoke to Dr Hemant Vakharia, a consultant obstetrician and gynecologist, to clear up some of the misinformation surrounding the condition, and to get the low down on some of the little known facts about endo.
Extremely painful periods aren’t normal and it could be endometriosis (Picture: Getty Images)
Superficial endometriosis vs deep infiltrating endometriosis
When you’re diagnosed with endo, some women (including me) get told which ‘stage’ of the condition they’re at, based on the American Society for Reproductive Medicine (ASRM) grading system.
It starts at stage one – where minimal lesions are present on the surface of organs – and goes right up to stage four – where you have large cysts and scaring deep into the tissues.
But Dr Hemant doesn’t think the ASRM grading system is very effective. Instead, he puts a patient’s endometriosis diagnosis into one of two broad groups: superficial endometriosis and deep infiltrating endometriosis.
Superficial endometriosis is where tissue grows on the surface of the ovaries or other structures and becomes inflamed.
Deep infiltrating endometriosis is where the dense adhesions and cysts begin to affect other organs within the pelvic cavity and outside the pelvic cavity – even affecting the heart and lungs.
The ultrasound
Before an official diagnosis, if conservative therapies like the contraceptive pill don’t manage the pain a woman is experiencing, then they’re usually referred for an ultrasound.
But while an ultrasound might be presented to you as a way to rule out endometriosis, it isn’t always conclusive.
Dr Hemant explained: ‘If the scan is “normal” they’re often then dismissed and not taken seriously.
‘But what we do know is negative imaging – the type you see with an ultrasound – doesn’t rule out endometriosis, this is because you can have superficial endometriosis, which isn’t necessarily picked up on the likes of ultrasounds or MRIs.
‘Therefore endometriosis clinicians have a very low threshold for offering patients laparoscopies’
Essentially, while scans pick up ‘deep infiltrating endometriosis’, they can struggle to identify superficial endometriosis.
The MRI
Dr Hemant said: ‘We often use MRI for patients who are thought to have deep infiltrating endometriosis, and where you need to understand how other structures are impacted.
‘But we know MRIs don’t necessarily rule out superficial endometriosis.’
Because of this, an MRI will usually only be offered to patients if they have suspected deep infiltrating endometriosis, or are still experiencing pain after a diagnosis of superficial endometriosis.
If you sense resistance when being diagnosed then ask for a second opinion (Picture: Getty Images)
Should you freeze your eggs before your laparoscopy?
During a laparoscopy – where endometriosis is often diagnosed – medics may chose to then perform a procedure to remove the endometriosis.
When a woman is born, their ovaries contain a finite number of follicles – these are the fluid-filled sacs that surround the eggs, and release an egg during ovulation.
Dr Hemant said: ‘Whenever you operate on the ovary there is a chance that, as you open the ovary, or you peel away a cyst, or remove an endometrioma [a medical term used for the endometriotic cists on the ovary], that some normal tissue will come away with that process.’
Dr Hemant used the analogy of an orange to better explain this.
He said: ‘If you peel an orange, as you’re peeling the skin off, inevitably sometimes some of the segment will come away with it.
‘Therefore what can happen is, because you’re removing the cyst or the endometriosis, if you take some normal ovarian tissue away with it, and then your overall ovarian reserve can reduce.
‘The alternative way to treat them is to drain them, but this way, they have a chance of returning.
‘If someone has come to you with a difficulty conceiving, you would often work in conjunction with the fertility doctors and we would recommend not to strip them but drain them.’
So, when it comes to the question of freezing your eggs, it’s important to speak to your doctor about your options.
You shouldn’t have to advocate for yourself to your doctor but don’t be afraid to, you shouldn’t be living in excruciating pain (Picture: Getty Images)
Fertility preservation
Everyone talks about freezing their eggs, but have you ever heard of ovarian tissue cryo preservation?
Dr Hemant said: ‘When it comes to fertility preservation there are two ways you can do that. One is by freezing eggs.
‘The other is called ovarian tissue cryo preservation, where you remove a bit of ovarian tissue, which is then frozen and that can be then put back into the patient at a later date for fertility or other reason.’
So how does it work?
Dr Hemant said: ‘In the ovary you have a finite number of follicles so what you can do is take a third or half of the ovarian cortex in one ovary and have that frozen.
‘What you’re doing is essentially freezing it in time of the age of that patient. So if you had it done when you were 25 then you’ve got effectively a portion of your ovary suspended in animation at the age of 25. Then later in life you can have that put back in.’
What natural treatments can you try?
Dr Hemant said: ‘In terms of natural remedies there isn’t a lot of data to support any particular natural remedy per say.
‘There has been some data that shows links to cutting out the consumption of red meat for example.
‘The problem is that it hasn’t been looked at in a large population observation or trial.
‘People also adopt an anti-inflammatory diet but again it’s difficult to say. Patients have modified their diet and seen a benefit but that’s largely anecdotal.’
An MRI could detect deep infiltrating endometriosis (Picture: Getty Images)
What should you do if your doctor doesn’t take you seriously?
Don’t settle for a non-answer if you know something is wrong.
‘Don’t accept being dismissed and make sure your symptoms are being taken seriously. Ask for a second opinion if you aren’t getting anywhere,’ said Dr Hemant.
‘If your ultrasound scan is normal and you still have symptoms, I would say to your GP, “I’m worried about having endometriosis, I know that imaging can be negative and I would strongly ask to be seen in an endometriosis centre”.
‘You can then have further investigations and be seen by an endometriosis trained clinician and have a laparoscopy.
More: Lifestyle
‘If the pain is bad enough for you to take regular pain killers and it impacts on your ability to work and enjoy your life, then that’s something that needs to be addressed.
‘The message is: periods are not meant to be that painful that you can’t function, intercourse isn’t meant to be painful.
‘I don’t want people to be told is that there’s nothing that can be done and you should just get on with it.’
Do you have a story to share?
Get in touch by emailing [email protected].
After diagnoses, 72% of women are not given any written information about their condition.