Endometriosis Awareness Week

It’s Endometriosis Awareness Week which gives me an excuse to write the blog post I’ve been planning for ages but was a bit nervous to write.

Warning: if you’re particularly squeamish or react like a 14 year old boy to the word ‘period’ then this post probably isn’t for you. But you may want to consider reading it anyway if only to help you get over that unfortunate immaturity.

Endometriosis Awareness Week

Endometriosis Awareness Week: My Story

I was a fairly late bloomer when it came to puberty and periods. I remember all of the girls around me getting their period and there I was, blissfully bumbling along with no idea of what was about to happen. When I got my first period, it was like being accepted into a secret club and I felt incredibly grown up. Then the reality sank in. Periods interfere with plans. They are bloody expensive – no pun intended. They make you (even more) aware of your body for 2 weeks out of every month.

The internet was a fairly new thing when I was young (‘in my day all of this was fields…’) and I feel like girls nowadays have some incredible resources, like this amazing site. But when I was younger, I mostly kept my concerns and grumbles to myself. I have always had heavy periods but I had no idea that this wasn’t the case for everyone. Girls at school talked about the inconvenience of their 3 day periods with an exasperated sigh and I assumed they were lying. Surely everyone’s periods went on for well over a week?

I remember lying in bed at a boyfriend’s house not wanting to go to sleep in fear that blood would soak through my tampon, pad, underwear and pyjamas and stain the bedding. My 17 year old brain couldn’t imagine anything more horrifying. Actually, my 31 year old brain can’t imagine many things more horrifying, even now. I remember my mum being confused as to how I went through a box of pads so quickly and being too embarrassed to say anything and so I told her I lost some at school. I remember the years of standing up at school/uni/work and automatically checking the seat in case I’d leaked onto the chair. I remember the pain that snatched the breath from my throat, had me doubled over in the street, groaning on the tube like a crazy person, unable to focus at work. The nausea. The upset stomach that started days before my period and continued days after.

When I finally went to the doctors, he seemed baffled: ‘Why on earth did you wait 15 years to tell anyone?’ My answer was simple: ‘I had no idea it was so bad’. Which sounds odd until you consider how secretive women still are about periods. I used to tuck a tampon away, hidden in my hand or pocket, trying to minimise the telltale rustling when going to the toilet at work because I didn’t want people to know, which is pretty odd when you think about it. If you were changing a dressing on an injury you wouldn’t feel the need to hide it – it would be an annoying inconvenience, not a shameful secret.

In private, women talk openly to other women about horrible days spent in bed with a hot water bottle, share embarrassing stories of accidents, panic together when a friend’s period is late. No one else ever mentioned the bleeding between periods, the upset stomach, the sickening dragging feeling in my pelvis and groin, the painful sex… and neither did I. I took their silence on the topic to show where the boundary was: we can bond over a bit of pain and some funny/cringey stories but anything else is still taboo. So I kept my mouth shut. How was I meant to know that they weren’t mentioning those things because those symptoms weren’t normal?

The cloak of silence around a very natural occurrence means that women aren’t able to diagnose themselves. So they wait and spend 15 years struggling. Or longer. I’m hoping that by talking about this, it helps someone: if your periods are super heavy, please speak to someone – it might be nothing but a doctor can probably help either way; if your periods are painful, and it’s a pain that interferes with your life, then please speak to someone; if you have other symptoms that make your periods a miserable experience, please talk to someone.

If you want to find support, information or more resources, take a look HERE. If you want to read about my laparoscopy and endometriosis removal, I blogged about it HERE. If you want to email me, there’s also  contact form in the blog menu at the top of the page. If you have read this far, I would really appreciate it if you could share this post on social media, it may help someone you know – thank you.

Lex

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11 Comments

  1. Jenny
    3rd March 2016 / 8:21 am

    Thank you for being so honest Lex. I’m thinking of getting myself checked out now.

    • Lex
      4th March 2016 / 6:43 pm

      Thank you so much for reading it, and honestly you saying that has made the panic and nerves about posting this totally worthwhile. I hope you get the answers and support you need from the GP x

  2. 3rd March 2016 / 3:36 pm

    This gave me shivers. And then made me go YES YES YES YES YES. WE ARE WOMEN, WE ARE GODDESSES, WE CAN AND SHOULD BE ABLE TO TALK ABOUT PERIODS. Periods shouldn’t be shrouded in mystery. No. Love this

    • Lex
      4th March 2016 / 6:42 pm

      I was totally channelling Beyoncé as I pressed send on this blog post. I AM A STRONG INDEPENDENT WOMAN. I DON’T NEED NO SCRUB… wait, I’m confused x

  3. Rebekah
    5th March 2016 / 9:03 am

    I’ve been considering going to the doctor for years. My periods aren’t super heavy and they only last seven days but the pain is unbearable. I hurt literally everywhere, I feel sick all the time, I also get really dizzy and live in fear of passing out for a week every month. Last time I had a period at work (I’m currently on the sick because of a broken foot but that’s a whole other story) I did actually pass out and they had to get me into the staff canteen, but I can’t just be off work for a week every month. It’s very frustrating. I had no idea that endometriosis existed, and I don’t know anyone else that has pain this bad, so I’m really glad I stumbled across this blog post. I’ll definitely go to see a doctor now, I think. Thank you for putting this out there!

    • Lex
      7th March 2016 / 10:21 am

      Thank you for your comment, I’m sorry that you’ve been suffering for so long. Please do go to the doctors, they only really started taking me seriously when I told them that it was affecting my job because I was having so many days off work. It really makes the nerves of publishing this post worth it knowing that it may have helped you x

  4. Laney Clarke
    6th March 2016 / 11:36 am

    I’ve suffered from painful periods all my life, starting at 14. Diagnosed with endometriosis at 33. Ive had 8 operations, therapeutic laparoscopies etc. Last year I had a large section of my bowel removed as I had a lump in my bowel which they thought may be cancerous. It turned out that endometriosis had grown so aggressively it had penetrated my bowel. My uterus and bowel are completely fused together with endometriosis meaning I am unable to have a hysterectomy. I’ve spent many a night in A & E as I pass out in pain during periods and ovulation. My consultant who is truly awesome has been my rock and helped me and my husband immensely. There’s an improving amount of treatment out there. I’m now 45, no periods, on HRT…… Bloody bliss. By the way, I was told I’d never had children due to the state of my insides. I have a gorgeous 10 year old boy. If you’re a sufferer, go to the doctors and ask for a specialist referral. I don’t want anyone to go through the level of pain and operations and incapacitation that i went through. It’s all very well being prescribed mefenemic acid for pain relief but that just masks the problem. Endometriosis continues to grown and flourish and this led to me having major surgery and the potential of having a colostomy bag if the bowel operation failed. Look after yourself . Xxxx

    • Lex
      7th March 2016 / 10:05 am

      Hi Laney, your story sounds truly horrible – I’m so sorry it took you so long to get the support and help you needed. Hopefully by sharing these stories, others will be inspired to go to the doctors and push for a diagnosis. I agree that pain relief is just hiding the issue and not getting to the bottom of it x

  5. 10th March 2016 / 10:51 pm

    I have been diagnosed with severe endometriosis, and it’s really a huge burden. My condition has gotten so bad that I do not even need to be on my period in order to feel that familiar stabbing that keeps me in bed or the nausea, or even losing feeling in my legs and collapsing. It will just attack me spontaneously.

    I had visited the doctors constantly for six years before being taken seriously enough to have tests done, and finally receiving the diagnosis that explained everything. I remember on that day, I thought back to when my teachers told me “it’s just a period, toughen up” when I’d be crying and trembling, doubled over, asking to be sent home. I thought back to when my peers would call me weak because I couldn’t handle ‘period pain’. I thought back to past doctors telling me “you’ll get used to it” and sending me away.

    Thank you so much for this post x

    Maira @ http://lovefrommaira.co.uk

    • Lex
      23rd March 2016 / 4:11 pm

      I hear so many stories that all involved women waiting so many years for a diagnosis or help. It’s shocking and needs to change. I’m hoping that, in some small way, by sharing our stories we are raising awareness and hopefully helping to shine a light on the condition. I hope that you have found some help or support since your diagnosis. Thank you for your comment x

  6. Jan
    12th June 2016 / 7:47 pm

    Hi Lex, just seen this. I have rosacea and also had endometriosis. I thought the pain was due to neuropathic pain from my breast reconstructive surgery. It wasn’t til I was bleeding solidly for 6 weeks at a time that I saw a guy. He removed a complex ovarian cyst and the endo and now all ok. It was grade 4 and stuck all my organs together and into my bowel. Any idea if there’s a link between endo and rosacea?

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