'After 7 surgeries to 'manage' endometriosis, here's what I wish someone told me 19 years ago.'

So, you suspect you have, or you've been diagnosed with endo. First, I'd like to say that sucks! There's no way to sugar coat it. It's okay to cry, eat chocolate and go through all the waves of emotions. Take a breath and absorb this information as best you can.

Watch: What to know about your period colour, according to Well's Dr Mariam. Post continues below.

I'm sorry to welcome you to the 'endo-warriors' community. Although we're strong, it doesn't change the fact that this sucks. You've got this. It may feel impossible right now, but you can do this — because it's not going to magically go away (believe me, I've tried).

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My diagnosis.

The year was 2006. MySpace was the cool place to be online, phones had Snake II, the Twilight book was taking off amongst teeny-boppers, and I was diagnosed with endometriosis. I was an awkward 15-year-old in year 10 at an all-girl South-West Sydney high school and had to miss my mid-year school certificate exams to have surgery.

From day one of my first period, I was in pain. Enough pain to faint or vomit during my monthly cycles, enough to have numerous days off school and work, and enough for my mum to seek help. As a teen, I was stripped bare, exposed and prodded as test after test was conducted with no explanation for the pain. Medical professionals told me it was 'normal' to have pain during my period, and they questioned whether I was 'just unhappy at school' as if I was making it all up. But my mum advocated for me, and I went into surgery.

"You have endometriosis," the doctor said as I sat across from her in her musty examination room, one week after laparoscopic surgery. "It's very rare to see this in a girl your age, it's more common in women during menopause."

I also couldn't stop thinking 'how'? How could I live with a condition like this? How could I find a job that would accept me being sick so much? How could I study for the HSC? What if I got my period on the HSC? How could I talk to my friends about it? Periods weren't an open discussion topic.

Back then, endo was considered a 'condition', not even a 'disease'. From my doctor and the pamphlet provided, I believed I was infertile, that all my periods would be painful, and I needed the pill to help 'balance' my hormones.

In the 19 years since, I've had five separate specialists, five more surgeries, including four excisions and a partial hysterectomy. I've tried every hormone treatment available.

It's different for everyone. Some people have extensive endo with little pain, while others have small amounts with excruciating pain.

For me, it starts subtly — a slight stir in my stomach, then nausea and a headache that sits behind my eyes. Within a day, any smell triggers nausea, light feels seared into my brain, and I'm exhausted. Then come the deep cramps from my lower abdomen through to my spine — a pulling, roiling pain that peaks in sharp waves, sending pins and needles down my legs and keeping me in a foetal position with a hot water bottle.

If endo grows on your bowels, you'll experience IBS symptoms. Endo on your bladder? Hello UTI-like stinging. Sharp pain when you sneeze or cough? That's endo attaching your organs together.

I don't have all the answers and everyone experiences this differently. But I have practical tools I wish I had when I was diagnosed 19 years ago.

From dealing with and managing my endo for the last 19 years, here's what I wish I knew:

1. Track, track and track!

Track your symptoms for two critical reasons.

First, it provides evidence for your medical team and yourself. You'll likely second-guess yourself, wondering, "am I crazy?". Tracking proves it's not in your head and helps you advocate for yourself.

Second, it helps identify patterns between symptoms, treatments, and cycles. I use the TimeTree app with colour codes and emojis — blood emoji for period days, notes for medication changes, and even an eggplant emoji for sexual activity. I also keep an "endo" photo album for anything I might need to show my doctor.

This method helped me recognise 14-day cycles post-surgery, that my IUD had moved, hair loss from a specific pill, and when my endo returned.

2. Find your person.

You need people you can talk to about your experiences — a partner, siblings, parents or friends. Be candid and open with someone who won't try to "fix it" but will just be there. Ask if they'd attend specialist appointments or scans with you.

When comfortable, discuss it with your partner. They need to be mature enough to buy you pads, prepare a hot water bottle, or listen to your symptoms. If they can't handle it, they don't deserve you. You need someone in your corner. It's hard doing this alone.

3. Financial preparation.

This is an expensive disease. I recommend opening a savings account specifically for medical expenses with a minimum of $2,000, and adding to it regularly. This year alone, I've spent over $6,500, and annually I spend between $5,000 to $15,000 on out-of-pocket expenses depending on surgeries.

Consider private health insurance with extras. I've claimed back on pelvic floor physio and non-PBS medications. Private health also helps avoid long public system waits for surgeries and allows better planning for recovery time. I'm aware not everyone is able to have private health. However, it's something to think about long-term.

4. Find your medical team.

You need a good GP, a specialist you feel comfortable with, and possibly a pelvic-floor physio, nutritionist, or psychiatrist.

I've found it particularly difficult to find specialists that I've felt comfortable with — of the five that I mentioned earlier, only two made me feel comfortable. I've also seen two others that I flat out refused to see again, let alone perform surgery on me. So, be prepared to do research on specialists before getting your GP referral.

Check Google reviews and ask in Facebook groups about others' experiences. Take a support person to your initial consultation, write down your questions beforehand, and bring your symptom tracking. You can request a nurse be present for physical examinations.

5. Be prepared for discomfort.

In all honesty, I've never gotten used to the discomfort of exposing myself, spreading myself or feeling a person examine me. I hate thinking of the number of times I've been asked to remove my pants and underwear to sit on the most uncomfortable chair ever invented to have my calves clenched by stirrups and asked to 'scooch down a little' until it feels like I'm going to fall off the seat. How something more comfortable hasn't been invented shocks me.

Be aware that you may require an internal ultrasound or Deep Infiltrative Endometriosis (DIE) Scan, which is uncomfortable and can be painful for some. If you need this, take a support person with you and take a day off work. Some things to be aware of that surprised me, is that some practices use a condom on the scan wand, and you'll likely be handed a box of tissues afterwards as they use quite a bit of lube (I normally have a pad on hand for post-scans).

For surgery (which could be a whole article in itself), be aware you may be asked to do bowel prep, which could involve simple laxatives or even an at-home enema. This is uncomfortable but not horrible. During your admission, you'll be given a pregnancy test and post-op you'll have a peri-pad between your legs — which can be very awkward when your nurse asks you to try and walk to the bathroom for the first time. I recommend holding it between your legs as you walk.

Remember that these are medical professionals and although uncomfortable for you, they do this every day, and you don't need to feel embarrassed to express your discomfort. Only a few months ago, I had to tell the ultrasound technician that my leg was asleep in the stirrups, and I needed a minute before I could walk post a DIE scan. The more you talk about it, the more comfortable you'll be with expressing the awkwardness and discomfort.

6. Plan and be open with others.

I have gone through a lot of life changes with endo as a constant annoying passenger in my life. I still work full-time, studied at university, travel and go through my normal life with endo. It's just a part of it. 

I accept that endo is a part of my life and the way I manage it is through tracking and preparing myself for what I call 'bad days'. Whether I was having a regular cycle, one every 12 weeks or just skipping my period altogether, I would track and pinpoint when I'd likely be unwell – I'd even put a placeholder in my joint calendar with my partner. It's hard, but I tracked my flare-ups, so I could attempt to have some control over the bad days. It's also useful to have a little purse of the 'essentials', like Panadol, Nurofen, Imodium, De-Gas, pads and wet wipes for the just-in-case moments.

You still may need to cancel attending an event or call in sick or take the time to rest, which is why I find it useful to be open with others. I'm not embarrassed to talk about my endo openly in a social or professional setting. I've found it better to be open than not provide any context at all.

If you have a good workplace and manager, you should be able to give them awareness that you have endometriosis or, at best, a chronic pain disease, and you're going through the process of managing it long-term. It's the same with friends. I tell them about my endo openly, answering any questions they have that I feel comfortable with, and if I need to cancel plans because I'm unwell, I just simply say my endo has flared up. Good workplaces and friends will be understanding. 

You do not need to apologise for your endo.

7. Practice empathy.

Remember, everyone's experience differs. Avoid comparison competitions — Stage 1 endo can be as painful as Stage 4. If someone says "your endo is worse than mine," I respond: "It's not a competition, we both have a s**t disease. Your experiences are just as valid as mine."

8. Channel your anger.

Nineteen years ago, the biggest change since my diagnosis is that one in seven women in Australia now has this disease. That makes me so mad. It makes me mad that only small changes in our health system and little medical research has been done in this time. It makes me mad that we still don't even know what endo really is or if there are multiple different types. It makes me mad that GPs have such little understanding of the disease, and some recommend IUDs to teenagers. 

But the more we talk about it — to partners, friends, families, employers — the more awareness builds. Anger at the situation isn't misplaced; it drives education and passion. More people will listen, you'll be heard, and change will happen.

I hope these tips help you manage your journey. I don't want others to go through this blind and silent as I once did.

For me, I hope my recent partial hysterectomy brings less pain. It's not a silver bullet — the endo will grow back — but I hope it's more manageable without the added hormones that caused so many problems in my life.

Remember: you're not alone, you're not crazy, and your experience matters.

Are you someone who struggles with endometriosis? Share your thoughts in the comment section below.

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