Endometriosis and my 20-year Journey Towards Diagnosis #aminumber5?

Christmas Day, 1993. The presents had been opened, the turkey eaten, the crackers pulled and the adults had sat down to watch the Eastenders Christmas Special. My belly was hurting, so I excused myself and went to the loo, where I discovered that Mother Nature had a belated surprise for me; my periods had started.

I was nine.

Skip forward 3 or four years and the hospital visits started. I went to the hospital about 6 times in a year, only to be sent home again with “grumbling appendix”, reeling from the fact that I had to have a doctor examine me by sticking a finger up my bum, every single time (despite the fact that I never had the usual fever and vomiting, just unexplained abdominal pain) and that nothing was being done to help me. My periods were heavy, even from this young age and I thought it was just what everyone dealt with. My mother, in the meantime, had been diagnosed with endometriosis after battling with doctors since the age of 19 about her horrific periods and pain. They treated her with hormone implants directly into her uterus to try to slow the spread of the growths, but ultimately it was too late and she had to have a full hysterectomy aged 35, including her ovaries and fallopian tubes, and her lesions were so severe there was talk of her losing part of her bowel, although luckily for her they managed to save it.

I think, in some way, I’ve always known that I had the same disease. I’ve seen a dozen different gynaecologists, been told a number of different potential diagnoses, and despite the familial link, my questions about endometriosis have always been brushed away. Last year, it got too much. I sat in my gynae’s office after YET ANOTHER ultrasound where they concluded that I was perfectly normal and cried. I asked them, through the tears, how it could possibly be normal for a 32 year old woman to sometimes be in pain for hours after sex and how penetration can sometimes feel like a knife to the belly? I asked them how it can be normal that sometimes my periods are so heavy that I can barely leave the house, how I lose huge clots and so much blood that I can, at times, feel it literally gushing from my body? I asked how it can be normal to be in almost constant pain during certain times of the month?

I think it was only because of my apparent hysteria and my resolute refusal to accept the same old line of “some women just have to deal with these things”, that made him offer me an MRI. A definitive window into my abdomen which would pick up even the slightest imperfection, something which could realistically have been done a long, long time ago, something which would have given me an answer and maybe made me and others believe that I wasn’t going mad.

And, lo and behold, the results came back.

“I’m sorry to tell you, Mrs. Crammond, that you DO have endometriosis. It’s a deep, infiltrating type which needs to be dealt with by a specialist, so we’ll be referring you to University College Hospital in London to have it seen to”.

And this time, there were no tears from me. I actually laughed when the doctor gave me my result. My accompanying “I KNEW IT!” may have been a bit too much, given the circumstances, but being handed this diagnosis was more than just a name for my problems. It was the key to a solution, and more than that, it was vindication. Proof that I wasn’t going mad, that I hadn’t just been being a drama queen all those years and confirmation that the pain and the bleeding and all the other issues weren’t even close to being ‘normal’.

One thing which has been abundantly clear, throughout the past twenty years of suffering, is that the onus has always been on me to just deal with it. The problems I was facing weren’t life threatening, and although they affected my day-to-day life, my pain just wasn’t considered important enough for anyone to find a cause for it. If I hadn’t fought, tooth and nail, for someone to take me seriously, I’d still be none the wiser and in my experience of other women and this problem, this is a prevailing attitude when it comes to gynaecological care.

It’s affected my life in so many more ways than just ‘a period’. I’ve missed social events, had days where it’s physically impossible to exercise because the bleeding is so heavy, not to mention the fact that it’s exhausting at times and regularly leaves me massively anaemic. Both the kids and Husband have had to deal with me having days where I’m in so much pain that all I can do is sit and quietly cry to myself, not to mention the effect it has on my mental health and feelings of absolute helplessness.

The most recent problem was being put on the mini-pill, which can apparently help to limit the growths, but no mind was paid to past mental health issues when prescribing them to me and I went on a downward spiral of increasingly dark thoughts about not wanting to be here any more. Fortunately for me, Husband realised that I was being sucked into the mental quicksand and that my downswing had coincided directly with me starting these pills. He begged me to stop taking them before I did something which could have destroyed our family and I sit here feeling unbelievably lucky to have him on my team, through thick and thin.

The Am I Number 5? campaign, reflecting the 1 in 5 women affected, aims to help raise awareness for heavy periods. It’s an educational awareness campaign to help women recognise and understand that heavy periods are a medical condition which can be treated. That there is a solution and you don’t have to fight through years of pain as I did.

Both fibroids and endometriosis can cause heavy periods, as can a number of other conditions. But despite affecting so many women, heavy periods can be a ‘taboo’ topic, with many women too embarrassed to discuss it.

More women need to realise that you don’t have to just live with heavy periods and that, actually, they aren’t a ‘fact of life’. Your life shouldn’t revolve around your menstrual cycle, and if it is affecting your life to that degree, you should ask for help. Prepare to be turned away or treated like a drama queen, but DON’T GIVE UP. Ultrasounds are the go-to early diagnostic tool for gynae problems but they rarely ever pick up endometriosis and an MRI is usually the only definitive way to get a diagnosis.

Although I got my diagnosis back in March, I’m still waiting for my referral to London to see the specialist, and I reckon by the time I finally get my appointment it’ll be close to a year since I was told it’s definitely Endo. The NHS is obviously pretty stretched at the moment so I’m trying to remain pragmatic about the fact that I have a diagnosis and will be seen…at SOME point in the future. When that might be, remains to be seen.

Wear White Again is a campaign which aims to educate women on what’s normal when it comes to bleeding and the different treatment options available. It’s SO important that campaigns like this exist and that we really up the ante with regards to getting help for women, like me, who are suffering unnecessarily.

Do you suffer from heavy periods? Have you been waiting for a diagnosis for years? Do you feel like your periods are unmanageable and are causing an impact on your life? If you’ve experienced any of this, leave me a comment below, but more importantly; DEMAND HELP. You can get involved with the Am I Number 5? campaign by painting your nails (with one nail a different colour to the rest as I have above) and posting them to social media with the #AmINumber5 hashtag.

I’m working with Hologic and BritMums to promote the Am I Number 5? campaign. Visit www.wearwhiteagain.co.uk for more information and advice