HOW I ENDO: Holly Kirk

Meet Holly Kirk, a true endometriosis warrior, who opens up about her experiences, treatment, and invaluable advice for fellow sufferers.

Name: Holly Kirk
Flow: Heavy!
Length: 4-7 days

Tell us about your background:

Since I was at school, I have had extremely painful and heavy periods. When I was 13, it was so bad I’d change maxi pad after maxi pad, lined with toilet paper for extra protection. Doctors told me all of this was ‘normal’ and that I should go on the pill to manage it. Later, when I went off the pill, my symptoms got worse and worse. I was experiencing extreme clotting, mid-cycle bleeds, 15/10 pain and endless visits to the emergency room. I got called a junkie, drug seeker, paranoid, depressed. Not long after I was diagnosed with endometriosis.

My first laparoscopy revealed the endometriosis spread from my ovaries and uterus, through my bowel, all over and up to my digestive tract. I am now two surgeries on and still trying to get on top of pain. I now want to share my journey to help others and hopefully stop some of the stigma and gaslighting around this serious issue.

Describe your first period:

Horrendous pain. A throbbing, deep ache. The experience was a living nightmare. It honestly felt like my vagina was going to fall out onto the ground! I started taking Mersyndol at 14 to get through the day.

Describe your symptoms – both then and now?

I get extreme pain in my upper abdomen after eating. I have sharp stabbing pain in my ovaries which I’ve now learned is a rupturing cyst. I experience extreme fatigue and nausea. I alternate between diarrhoea and constipation, experience painful sex and migraines.

I found relief after my first surgery, however after the second I started to feel worse that I was before. The only relief I get now is from strong pain killers.

What has your treatment journey been like?

My first surgery was great. The surgeon made me feel heard. However, since then, I feel like I am constantly having to prove myself and validate my symptoms. It’s like I get put in the too-hard basket.

I’ve now had to stop work. I get to the end of each day and ask myself ‘would I have been able to get through a full day of work today without leaving early’ and 9 times out of 10 it’s no. Combining the cramping, fatigue and migraines, I have chosen to take a break and put myself first.

What does your pain flare survival kit include?

Palexia and anti-nausea tablets, a heat pack, my boyfriend and my dogs, and nature/sun. It’s the little things. And if all else fails, the Royal Melbourne emergency department knows me well.

Do you follow any special diets?

There is SO much information out there, lots of it conflicting. I recently cut out caffeine and I don’t drink alcohol or eat bread (both only on special occasions). But so far nothing’s working. I’m trying to figure out what’s best for me!

How do you find balance and keep a positive mindset?

Honestly, I wing it. It’s shit, there’s no way to sugarcoat it. I try to remember that there are people even worse off than me, which helps put things into perspective. When that fails, I get outside. Being outside in nature is my saviour, and spending time with my grandparents and animals.

What has endometriosis taught you?

Be humble and compassionate, you never know what someone is going through. Many illnesses may be invisible, so be kind and don’t be an asshole. And there is always someone worse off than you, keep positive.

What advice do you have for:

• Someone who has just been diagnosed: Push for surgery sooner rather than later, and make sure you have a great gynaecologist. Ensure you have private health insurance or be prepared for a heavy bill or a long wait time. Advocate for your needs and wants.
• Anyone about to have laparoscopic surgery: Expect nothing, accept what it is! You WILL be okay, it WILL be painful, but it really isn’t the worst thing that could happen. Plenty of animal cuddles and a good heat pack!
• What to pack for hospital: I took a stress ball with me to hospital – easy way to keep my mind distracted. And don’t forget to take your laptop and charger… and a great lip balm! Life saver!
• Someone looking for a surgeon: Ask if they do excision surgery, read google reviews and ask questions in Facebook groups. Do your research and get a second opinion. Trust your gut, it’s always right.

HOLLY’S ENDO LITTLE BLACK BOOK

• Naturopath: Natalie Honig in Bacchus Marsh
• Helpful Resource: Facebook Group – Endometriosis Support Australia, Endometriosis Support Victoria. Awesome and real, raw, honest advice.
• Book or TV show: Endo What. It isn’t out in Aus yet.

Interested to read more stories from women living with endometriosis? See how fashion designer Kate Anderson manages her pain.