Endometriosis Awareness Month ‘23

For those of you that don’t know, March is endometriosis awareness month here in New Zealand. It is a time for those of us in the community to come together, speak up (extra hard), and have our voices heard to bring attention to this epidemic affecting 1 in 10 people born with a uterus.

Brands get behind it, donating and spreading awareness, Endometriosis NZ spearhead multiple events and fundraisers, and this year I wanted to do my part using my platform. My most powerful tool I have discovered in the last year is my voice. My voice allows me to share my story, help others, and make people feel less alone. With that in mind I decided this March I was going to say YES to any opportunities that came my way to use my voice and share my story. So far I’ve had two opportunities relating to endometriosis, and one about gut health.

Starting with the gut health opportunity; Gutrition and I knew we wanted to collaborate early on but were working out how to tie both our platforms together given the distance (Gutrition are based in Australia). They were popping together an “IBS Stories” series featuring members of the Gutrition community, and extended an invitation for me to be a part it. The interview covers everything from how Chronically Ellen Eats came to be, my top tips for newly diagnosed IBS persons, and my experience with the Low FODMAP diet. Of course, I managed to sneak some gardening chat in there too!! Check out the full blog article here.

Secondly, I had an opportunity appear with AWWA period care to share a little bit of my endometriosis story. I have always wanted to work with the progressive B Corp company, and absolutely jumped at the chance. Hilariously I dropped everything to do a 10 minute photoshoot immediately and sent through the photos (which they loved) and they asked a few questions from there. This interview will be released any day now, and in their next EDM.

The third opportunity I have had was with Endo Botanic to share my endometriosis story. Liv of Endo Botanic does amazing work within the New Zealand community and is someone I have always admired for her determination and strength, so again, I jumped at the opportunity to work with her! With Liv’s permission, I have typed up the final published interview for you below;

Liv: What has your endometriosis journey been like so far?

Ellen: I’ve had an extremely tumultuous journey so far with plenty of ups, downs, tears, intrusive thoughts, and real hurdles to overcome. I won’t lie, it has not been easy and is something that I need to chip away at every day.

Liv: What symptoms do you have secondary to endometriosis?

Ellen: In addition to endometriosis I also have; Adenomyosis, PCOS, Fibromyalgia, Long Covid, Asthma, and CFS (chronic fatigue syndrome). I also suffer from terrible migraines, a weakened immune system, and IBS.

Liv: What treatment have you received or are currently receiving? Has this treatment helped?

Ellen: It’s a case of what treatments haven’t I tried at this stage! I have had multiple excision laparoscopic surgeries which provide immediate relief. I have also had Botox injected in my pelvic floor, nerve blockers throughout my pelvic, and General Anaesthetic in my uterus. This is a brilliant treatment when combined with a pelvic physiotherapist and provides myself with relief for around 10-12 months. I’ve also been on the controversial drug Zoladex (goserilin) in conjunction with an add back hormone. I found this extremely effective and would describe it as giving me a new lease on life once I got past the 2 months of menopausal symptoms. I have also been on all sorts of nerve pain blocking medications including CBD. Whilst I loved CBD and the pain-relieving effects, unfortunately, I have an allergy!! I currently go to pelvic physio once a fortnight for acupuncture and practical muscle work in the localized and wider pelvic area.

Liv: What helps your pain? Do you have any self-care tips when you are having a bad day secondary to your symptoms?

Ellen: We have a wee joke in my household that I live and die by the wheatbag. My husband will often just go and make one for me - even in the middle of summer - when he see’s I am getting uncomfortable. I also try to catch things early and take my pain and anti-inflammatory medications when I need to. I hold no shame in doing so and have always got something on hand in my handbag. Diet is also an important part of my pain management along with gentle movement such as gardening, being out in nature and yoga-based stretching.

Liv: What degree has endometriosis interfered with your life?

Ellen: Endometriosis has had an effect on my life that no-one could have ever predicted. The impact has been huge, and including the weakened immune system, I believe was a large contributing factor to contracting long covid. Frustratingly I am currently not working due to the combination of chronic illnesses and I’ve been told I will probably never be back in full time work as a result. It’s also had a huge effect on my relationship with my husband, but we find as long as we keep talking and make an effort, keeping everything out in the open - this is key to avoiding arguments and feelings of low self worth.

Liv: Do you have any advice to other women with endometriosis? or any advice to family or friends supporting someone with endometriosis?

Ellen: It’s an extremely scary time going for that first scan. The unknown of “will they find anything?”, “what if it’s cancer?”, “what happens if they can’t see anything? Will they not believe my pain?”. I actually recently supported someone through these exact questions and associated emotions. We discussed her fears, and I gave her my experience with them. Not only did that help her feel a little less alone, but a little more empowered on what to do if they found nothing, and the right questions to ask. I could relate as they saw nothing on my first ultrasound - but I was stage 3 and nearly lost an ovary to a chocolate cyst! My point is to get in touch with someone who you can talk to who will air out all those feelings. I highly recommend a free call with Endometriosis NZ - they helped me find my specialist and told me what to do to get a diagnosis and treatment.

Liv: Is there anything that you would like to see change within the health care system to better support those living with endometriosis in New Zealand?

Ellen: There is a real inequality and lack of funding surrounding endometriosis/pelvic pain within New Zealand. I understand that I am in an extremely privileged situation have had high quality health insurance since birth thanks to my parents and had the education to continue that on so it was there when I really needed it (we can no longer afford not to have it!). Understanding not everyone is in this situation, I see the inequality in the Heathcare system where Māori/Pacifica communities are not receiving the care they need due to cultural stigmas, and medical bias. There is also a dismissal of pelvic pain being a legitimate issue, no matter your gender or race, especially by older General Practitioners (this is what caused a 10 year delay in my diagnosis). With a lot of those older GP’s retiring, and awareness really starting to sink in and do its job, I have however seen a gradual change in the medical field. There is still a long way to go however.

FIN

I’ll continue saying yes for the rest of the month and using that voice of mine - get in touch if you’d like to chat.

Go Well,

Ellen x