Posted in Life

The One Where I Talk Endometriosis

*Brutally honest blog post alert*

I’m cautious about oversharing on here, or boring the pants off people with details of women’s health issues. BUT, this week has seen a mass of coverage about endometriosis by The Guardian, so I felt it only fair to talk about my experiences too. As I wrote on Instagram, I like to put on a front most days and when I crumble, build myself back up again asap.

For those of you in the dark, endometriosis is a gynaecological condition in which small pieces of the womb lining attach to other bits of the body. In a nutshell, this means a horrendous amount of period pain and sometimes throughout the entire month. Periods aren’t the stuff of glamorous blog posts or a topic people are keen to talk about, which is why I think endometriosis remains largely hidden.

The pain is crippling, mind-numbing and not unlike labour. Managing daily life is a challenge, and one that I try to accomplish with dignity and strength.

I was wrongly diagnosed from the ages of 14-23, apparently suffering from IBS, Kidney Stones, Hypochondria, Appendicitis and the rest. At school I remember being in so much pain from periods, I would sit doubled up at my desk. Friends commented it was “only that time of the month”, and in all honesty I think they thought I was just a big baby.  By the time I got to uni, I had a party trick of appearing approximately 11 months pregnant within seconds. Work followed, and managers lost sympathy with my constant absence. Not to mention needing IV morphine in the office.

Forced to take time away from work, I began writing and blogging from home. Building up my self-employed career from scratch, I began to realise how impossible an office job had been. I am of course immensely lucky to have my beautiful babies as I know fertility is a huge issue associated with endometriosis, and another reason it needs to be talked about.

Fast forward to last year and I seemed to have a horrendous stomach ulcer. After an endoscopy which revealed nothing, I was admitted to hospital and the random diagnoses started again, but this time it was a hernia. One kind doctor suggested it could be my endo, yet this was dismissed by everyone else. Knowing that endometriosis can migrate, I started on a fake menopause drug (again) to see if it helped, and miraculously the upper abdo pain disappeared. Ectopic endometriosis (endometriosis in other parts of the body) is another little known entity among doctors, and something which has to be researched.

Over the past 17 years I’ve had several procedures, laparascopies to remove endo, all variations of the contraceptive pill possible and a ton of fake menopausal treatment (also known as Prostap or Zoladex). My last laparoscopy was at the end of June and after a hideous recovery time, the pain is back already. Frustration doesn’t even cover it. Recently joining the gym, I’m gently attacking the stress I feel and trying to regain control. I’ve also overhauled my diet, removing gluten and dairy and investing in a Nutri Bullet to up my greens intake. Increasing energy levels is key, and for me these adjustments have been game-changers.

I am worn down by multiple hospital visits and treatment, but most of all from the lack of medical understanding and support. Appearing at the GP with yet another symptom, there needs to be a link made, an acknowledgement that endometriosis is more than ‘just’ a period issue. Fatigue, infection and a load of other symptoms seem to accompany it in large number of cases. Not to mention the effect endo has on careers, relationships and finance.

I feel compelled to do more and would like to set up a support group eventually, but for now, please get in touch if you are nodding along to the above.

Us women are made of damn tough stuff and I have no doubt that we can battle through this together, emerging even stronger.

Author:

Beauty, fashion and lifestyle blogger

12 thoughts on “The One Where I Talk Endometriosis

  1. This is me, nodding and getting in touch!!!! Thank you for being so amazingly brave to lay this all out there. And, yes, you should eventually reach out and start a support group in your area. 🙂 You’d be surprised at how many ladies come out of the woodwork and how quickly lifelong bonds can start. <3 I’ll be following you, Li’l Missy. You continue to take care of yourself as you’re doing now.

  2. You are so strong lady and are going through so much but with as you write, with so much dignity, this post will help many because endometriosis isn’t covered enough in the mainstream media and it should be. It makes me angry you are not getting good enough care from your GP too. I want you to have answers soon and to feel better. Lots of love xx

  3. Oh darling. I’m so sorry to hear about how you have suffered and are still suffering. But seriously well done on writing such an eloquent and honest post about the condition. A condition which let’s face it hardly anyone ever speaks about. I’ve no doubt it will help so many people. And I definitely think the support group is a wonderful way to get the ball rolling. Much love x

  4. Nodding along to the above as well.
    Have you had a chance to view the documentary that was released in the spring, Endo What?
    It can be downloaded at endowhat.com. It brings light to the plight of the 176 million women that have this disease. My best to you-

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