Endometriosis Awareness Month: How I Have Dealt With Evil Endo For 9 Years

I have been raising awareness of Endometriosis for just over nine years after being officially diagnosed with the enervating condition in January 2015.

It wasn’t really talked about back then. I hadn’t even heard of Endometriosis until I was undergoing the op. All I remember was having debilitating periods for most of my later youth years into my early twenties.

Fast forward to today in 2024, it’s becoming more and more recognised! I think it’s fair to say I’m quite an expert in understanding what Endometriosis is now and what it has done to my body. To put it lightly, I have had severe infertility complications since discovering I had stage four endometriosis in early 2015, which has been heart-breaking to say the least.

If you would like to have a further understanding of Endometriosis, I have written tons of posts over the years that I have linked below. If you would like a brief outline, it’s a bloody subject, pun intended – the women’s menstrual cycle playing havoc on ‘one in ten’ ladies labelled as Endometriosis. Or I like to describe it as Evil Endometriosis from time to time.

Zoey’s Endometriosis Blog Posts

Continuing to Raise Awareness for Endometriosis

Finding Out I Have Endometriosis 7 Years On

The Struggles of Infertility: How to Support Each Other Going Through IVF or DEIVF

Endometriosis Awareness Month: #EndotheStigma

Endometriosis Operation Update

My Endometriosis Story

A Gentle Routine to Pick You Up When You’re Battling Endometriosis

Grey days, Life After Endometriosis Surgery

Girl Talk: Battling through Endometriosis

IVF: Things To Know

Anyway, I’ve had to undergo some severe major operations over the years, a stoma on both sides of my stomach – how fetching! Then reversed the stoma a few years later. An ovary removed. And lastly Endometriosis tissue burned around four times. I’m no longer allowed any further abdominal surgeries unless absolutely necessary in the future as I’m considered “high risk” thanks to my bleeding uterus.

Late last year I was told by an NHS Pathology Specialist that the only way for me to be “cured” will be to have my womb completely removed due to extreme blood loss every month, in order for my bloods to flow together properly, so that was the icing on the cake. And, obviously having my womb removed is not an option for me right now as I have been struggling to have a baby through IVF and DEIVF for what feels like a life-time.

So how have I dealt with Endometriosis for nine years?

Some days are good, some days are bad. When my period comes I am either the hormonal devil trying to live a relatively normal life or I’m completely wiped and bed ridden. I find the infertility trenches much harder to contend with.

As the years go on, it doesn’t get easier, because there is no cure and I’m quite surprised there isn’t a cure yet to be honest with you.

Endometriosis tissue grows back, however the surgeries help ease the pains for a little while.

I’m edging closer to thirty five and I’m scared stiff that I won’t ever be able to have children – the not knowing of will I ever get to experience motherhood makes things horrendously hard.
So, the reality is, Endometriosis has sucked the living life out of me for nine-plus years, draining me to my very core as a vampire would.

It’s worth noting that I have stage four Endometriosis, so mine is considered “severe”. I can only comment from a stage four-er’s perspective. Not that stages of Endometriosis should matter, because they don’t, it’s just what the Doctor or Surgeon writes on your notes after you have a laparoscopy. It’s like you’re being stamped with “your infertility changes are fucked”.

Anyway, I thought I would share some Endometriosis tips I’ve learnt over the years. So, here are a few “life-saver” remedies and products that work wonders for me, they may not work for you as everyone is different, but hoping there is one or two pain relieving items or natural remedies that you may want to give a go.

Zoey’s Life-Saver Natural Remedies and Pain Relieving Products:

I have to take the strongest painkillers due to the severe agony I’m in. So, co-codamol is my best friend during that dreaded time of the month. I usually take the maximum I can of these, because honest to god the pain is horrendous, and there has been many times where I have felt like I just want to be in an induced coma until I stop bleeding. That may sound rather dramatic, but trust me, it’s hard being a woman with severe Endometriosis.

On a lighter note, a scented and heated microwaveable compress has been a game-changer. I bought this one and it’s fab! Not only do I use this on my stomach to ease the pains and discomfort, I also use this on my neck and shoulders a lot too. I do enjoy a hot water bottle every now and again too. I’ve got one of those long hot water bottles, which you wrap around your tummy, which hits the right spots.

Baths are very much needed during that awful week. I often have two baths a day to ease the pains. I tend to use some calming de-stressing oils such as Aromatherapy Associates or some relatively cheap bath salts that I’ve picked up from my local supermarket. If I’m feeling fancy I adore the Neal’s Yard bath salts!

Peppermint tea is really soothing for the tummy. Peppermint has been shown to have antioxidant properties, which can reduce pelvic pain for people who have Endometriosis. Chamomile tea is another alternative which is great for Endometriosis. Another fab tea I like to have in my routine is green tea.

Switching up your diet can be beneficial. I find eating more vegetables and fruits such as berries has helped ease some of my Endo pains. Eating some fish can be really helpful too, such as salmon, seabass and prawns. I’ve also tried a gluten free diet, and that has been great, however, I personally find it tough to stick with.

Yoga is amazing for helping relaxing the mind and body. I don’t do yoga enough, however, whenever I do, my mind and body feel amazing when I set aside ten-twenty minutes during an Endo flare up. Another gentle exercise alternative would be to walk with a podcast on, this usually helps me distract my mind from thinking too much about how much agony I’m in. It’s good to move the body! It’s important to listen to your body though, if you need to stay in bed, just relax and have a duvet day or two.

For days when you’re bed ridden, a few minutes of mindfulness is very much needed to make yourself feel better! I tend to favour ‘Headspace’ as you can choose how many minutes you want to meditate for. ‘Headspace’ really helps me drift off to sleep most nights too. It’s the only thing that really helps with my severe insomnia.

Acupuncture is a fairly new one that I’m trialling to manage my Endometriosis and Infertility complications. I honestly had about 1000 needles in my body the first time I had acupuncture, and as daunting as that sounds, it made me feel so much better the following day.

So those are my life-saver natural remedies and pain relieving products for evil Endometriosis. You may be familiar with some of these already, but perhaps there is something new to try to help ease the pains.

Why isn’t there more support?

I honestly wish there was more support in the health-care system and in the work-place for those with Endometriosis and Infertility struggles in the UK. Well let’s face it, it would be lovely to tackle Endometriosis and Infertility support all over the world.

I suppose you’re kind of left to your own devices with battling through this cruel condition, you figure out what works and what doesn’t work for you. Of course, having surgery to remove Endometriosis tissue is undoubtedly amazing, however it is not a cure.
I’ve heard Spain are doing incredible things in regards to Endometriosis support with paid medical leave to women suffering from severe period pain. A huge round of applause to Spain for that one – finally women feel heard that some are suffering every single damn month and are now being supported.

Anyway, before I dash off and do some spring cleaning, which I’m not particularly excited about… ladies always remember to take care of yourself and your body! Put yourself first! You know your body best!

If anyone else is struggling and wants to rant about Endometriosis or the annoyance of Infertility struggles, please leave a comment below or you can always private message me on Instagram.

11 Comments

  1. March 18, 2024 / 2:28 pm

    I’m so sorry you have this condition. Being a woman isn’t easy at all and I pray for a total recovery for you.
    Much love.

    https://goalsobsessed.com

    • zoey
      Author
      March 19, 2024 / 4:24 pm

      It really isn’t being easy being a woman! Thank you Bernice xx

  2. March 20, 2024 / 3:41 pm

    I totally relate to a lot of things, I wish I could just sleep through the period week! I have suspected endometriosis and was told that I’m too young to have surgery…Heat is a must for me, unfortunately, co-codomal didn’t work for me – and it left me with extreme brain fog (could barely speak!). I’ve been using naproxen with paracetamol, and then have to take omeprazole to protect the stomach (another thing the doctor didn’t mention – thank you FB). Sending you lots of love xx

  3. zoey
    Author
    March 20, 2024 / 8:05 pm

    What?! How is someone too young to have surgery for Endo? That seems a bit weird? Yeah co-codomol can have those effects. I’m so used to taking it. I’ve tried naproxen, that’s ok, but I need something stronger these days. I don’t know of omeprazole… I will have to look that one up. xx

  4. April 2, 2024 / 9:09 pm

    I’m so sorry that you have to live with that pesky condition. It’s so discouraging to see how little attention and resources was directed at research of women’s medical conditions and finding much more effective therapy. It’s like our health doesn’t matter one bit!

    On a brighter note, I’d like to share something regarding the topic – a woman from Serbia (my country) actually rowed across the Atlantic ocean with an all-female crew to raise awareness of endometriosis and they donated their entire earnings to a charity that promotes the subject and offers help to the affected! She suffers from endometriosis as well and it’s personal for her, she was even a guest on a local feminist podcast where she and the host spoke of the issue.

    http://www.couture-case.com/

    • zoey
      Author
      April 4, 2024 / 2:00 pm

      Thank you Jelena. So true, it amazes me how there is still so much to do regarding Endometriosis.

      Aw that’s a really lovely story. We have the Endo walk in London which happens yearly. I haven’t walked it myself yet, but it’s something I would like to do some day. Rowing the Atlantic sounds incredible though! Speaking of charity stories, I signed up to ‘Race for life’ in June. I’m so scared as I haven’t run that much since my younger years. But need to wait for my awful period to end first. It’s been so painful the past 2 days. xx

  5. April 2, 2024 / 9:14 pm

    I’m so sorry that you’re suffering from this pesky condition. It’s so discouraging to see how the world doesn’t invest time and resources into exploring women’s medical conditions, especially their reproductive health! It feels like our health doesn’t really matter to anyone.

    Anyway, when it comes to the topic – a woman from my country, Serbia, was the first woman to row across the Atlantic ocean with an all-female crew in order to raise awareness of endometriosis! They donated all of their earnings to a charity that does the same, and she was also a guest in a local podcast speaking of the issue with the host who was so welcoming and did her best to make it as clear as possible.

    Sending you love! <3

    http://www.couture-case.com/

  6. Danielle Beautyblog
    April 7, 2024 / 6:38 pm

    Love reading your tips, I dont have endo but do a lot of them when its my time of the month too! Enjoying acupuncture too! xx

    Danielle’s Beauty Blog

    • zoey
      Author
      April 9, 2024 / 9:55 am

      Thank you Danielle. Our time of the month is such a pain in the butt isn’t it! Acupuncture is amazing, I need to book in another session. xx

  7. April 10, 2024 / 3:44 pm

    Thank you for sharing your experience, I had heard about endometriosis but I didn’t think it was so difficult to cope with, I hope they soon find a more effective treatment against this condition that many women suffer from.

    • zoey
      Author
      April 10, 2024 / 4:13 pm

      Thanks Rebeca. It’s a horrible condition to live with. x

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