Living With Endometriosis

Endometriosis affects nearly the same amount of women as breast cancer does, but still whenever I mention the condition to people, most have never heard of it. I always recommend they visit to learn more about the condition. I thought I'd write a little bit about my own personal experience with Endometriosis. So grab a cuppa, let's chat.
Sooo when I first started my period everything was 'normal'. I experienced a mild amount of cramping and some mood swings but other than that, everything was pretty textbook I guess. The 'normal' regular periods lasted for around 4 years. Until I was around 16 years old in my last year of school and I noticed that things were starting to change. I was developing severe pain that just seemed to get worse over that year. I dreaded every period and I constantly struggled to control my temper when I was in so much pain.
I remember the first time I realised that things probably weren't 'normal' anymore. I walked into my IT class and someone said hi to me. That's literally all they said. Inside I just raged! You know in cartoons when they get angry and slowly turn red until they explode? That. I walked straight out of my classroom, and even straight out of school. Like, right out of the building. I walked home and crawled into my Mum's bed. Rocking back and forth trying to make the pain go away.
For a long time that carried on. I was missing days off of school. I'd frantically Google solutions to period pain however nothing seemed to work. Painkillers like paracetamol and ibuprofen didn't feel like they had an effect at all. The only thing I found that helped was heat. I didn't have a hot water bottle at the time so in a panic I filled plastic water bottles with boiling water and wrapped them in towels (I do not advise this). I was just desperate for some release from the pain. I would just lay on top of those bottles shaking and starting to cry until I slowly felt worn out enough to fall asleep.The pain radiated over my stomach, around my back and down my legs.
Two years later when I was 18 years old, I was sat in my Dad's kitchen talking to him and my step-mum. I was telling them about my symptoms and how much I was struggling, and she mentioned Endometriosis. I'd never heard that word in my life, but every symptom matched up to what I was feeling. My step-mum had also been struggling with Endo, so she knew the feeling first hand. She advised me to go to my doctor and explain everything.
This is where I consider myself extremely lucky. I went to the doctor and they instantly agreed to refer me to a gynaecologist. Most women have to beg and beg their doctors which can take a long time to get diagnosed, but luckily I was referred after my very first appointment. My doctor did say he highly doubted I had it as I was too young, but didn't turn me away. I was seen by my gynaecologist for external and internal exams and scans. Before I knew it, I was booked in for a diagnostic laparoscopy. It was under a year between my first appointment and official diagnosis through laparoscopy.
So I wake up fuzzy headed from my operation. My surgeon comes over, and there I was, 18 years old and being officially diagnosed with Endometriosis. I will say it was like a brief wave of relief just washed over me. Finally all of the pain and the emotions from the last few years made so much sense! However I didn't really realise what journey lay ahead of me at the time.
I was advised to start a 6 month course of Zoladex, which would be administered monthly by my doctor. I wasn't really told much more, I was just instructed to research the treatment of Endometriosis with Zoladex. Needless to say, the research scared the living daylights out of me.Zoladex puts your body into a temporary or 'medical' menopause. An implant is injected into your lower stomach and the implant begins to dissolve and release the medication into your body over the month. I was told that I probably wouldn't feel symptoms until month 2 or 3 but oh my gosh, I felt those symptoms just a couple of weeks after my first injection. Stupidly I started this treatment at the beginning of a very hot Summer. Trust me, this was not ideal.
Every 10-15 minutes I was experiencing hot flushes that started as an intense burning, prickly feeling in my chest that slowly rose up to my face and seemingly consumed my body. I had heart palpitations all day every day, I was constantly sweaty, I had head aches, I struggled sleeping. I was beyond irritable, I wish there was a better word. I was so sensitive. I actually quit my job because I was too irritable and I couldn't be bothered to be there in the office which wasn't air conditioned while I was feeling like that. I was relieved when those 6 months came to an end as I wasn't allowed to continue treatment.
They limit the treatment to 6 months because one side effect of Zoladex is that your bones start to thin. If you continued treatment, your bones would get quite brittle and break easily. I look back at that Summer as one of the worst Summers I have experienced thus far. Even my doctor used to just say "bless you, you're too young for this, bless you" when she was injecting me. When my doctor sympathises, you know you've got something to moan about.
Unfortunately going through that insane treatment didn't change anything. I am now 25 years old and still dealing with the nauseating pain every month. Sadly there is no cure for Endometriosis. A full hysterectomy is regarded as the only 'cure' but even women who have gone through a whole hysterectomy still get the Endo pain.
However, the worst thing about Endometriosis, is the people who think they know more. They think they know better. Quite often I'll hear "Oh. My sister had that. She's had like 2 kids. You're fine" or "Ah yeah I know women who have had that. Periods suck" It feels like sometimes people don't take you seriously, because the pain isn't visible like a cut or a broken bone, they can't image that you'd be in severe agony. Or they simply aren't educated when it comes to Endometriosis and they just think you're over reacting.
I wanted to write a little about my experience in the hopes that I'll raise some awareness and let other's know they aren't alone. If you want to ask any questions or chat about anything, feel free to either comment below or contact me on Twitter: @gmmlsknny

Till next time!


  1. Blimey it sounds like you've had a lot to deal with, and it really does sound excruciating. If my regular period pains have me sweating and swearing I can't imagine how you must feel! I hope that people's attitudes start to change as more awareness spreads - I am definitely seeing more about it in media than I used to.

    1. You're so right, it has been in the media quite a lot recently! It seems like I've seen it everywhere. Which is definitely a plus. It blows my mind that 1 in 10 women suffer with Endometriosis, but there's so little information and knowledge available about it. Doctors don't know much about it either! It's crazy x

  2. Thanks Gemma for sharing this. I do suffer severe PMS and cramps but nothing close to what you've mentioned. I really pray a cure is found soonest to relieve people like you from this horrible pain.

    Take good care,

    Carina x

    1. Thank you so much Carina. Hopefully I can spread some sort of awareness or something. It's as common for women as breast cancer is, there are so many women just living with bad pains because they don't know about things like Endometriosis! I hope a change will come some day x

  3. I think I remember something I read about endometriosis that was written in the 90s, stating that the only cure would be a "pregnancy". and I'm like.. WOW. endo can cause infections all over your body, it's serious stuff. my gyn. mentionned I might suffer from it too, but as you say, a diagnose takes A LOT of time. funnily enough, just starting my period actually, and just took my first pain killer, yay! hope you have a better day :) thanks for sharing your story.