My Endometriosis Story

My Endometriosis Story

When my doctor told me for the umpteenth time that the reason I felt so exhausted, run down and miserable, was because I was working too hard, I found it hard to believe. I felt that at 29, my energy levels should be high – I shouldn’t be flagging like I was.

It was Spring 2015 and my mood was low. I frequently went straight to bed as soon as I got home. I cried most days. I felt lost, anxious and was horribly aware of the strain I must be putting on my amazing boyfriend, Mark. One hour of Zumba left my muscles in excruciating pain for a week and I’d be so exhausted I’d cancel all my plans. My hips always ached, especially my left and I had terrible period pains for two weeks every month.

My periods were 14 days long and very heavy; I felt wretched and assuming the problem was hormonal, I had already switched from the pill to the copper coil the year before. This made my periods worse so I tried the hormonal coil, which made them worse still. Every time I went to the doctors I was made to feel like a hypochondriac; that my periods were no different to anyone else’s. In desperation I looked elsewhere for help. People like Deliciously Ella, Madeleine Shaw and Amelia Freer had become incredibly popular and the impact that food had had on them intrigued me. I bought all of their books and followed their blogs religiously. All had experienced ill health in some form or another and transformed their lives by transforming their diet. So I decided to book an appointment with a local nutritional therapist.

This appointment changed my life.

After an initial consultation, Laila gave me the confidence to return to the Doctor and demand various blood tests. My Doctor scoffed when I told him I was seeing a nutritional therapist, but I no longer cared – finally someone was listening to me and I had the confidence to ensure that I came away with what I needed.

Most significantly, my results showed that I was severely iron deficient anaemic. I reduced my caffeine intake and started taking strong iron supplements with Vitamin C, as well as a number of other supplements prescribed to me by Laila. I ate protein with every meal and increased my intake of leafy green vegetables and organic red meat. I cut right back on wine and cut out refined sugar completely.

After three – very difficult – days, I gradually began to feel better. I had more energy, I lost weight and most importantly I wasn’t anxious and I no longer cried all the time. I felt calm and my iron levels were increasing however my periods were still getting worse. Upon Laila’s suggestion, I took a cortisol test privately and my levels came back through the roof, I was on the cusp of adrenal fatigue and the figures suggested that there could be some form of severe inflammation in my gut. By Autumn 2015 I was desperate. I’d done everything I could think of and although I felt healthier, my periods were now 19 days long and getting longer every month. I felt weak and returned to the Doctor to be met with another dead end, saying that the cortisol test I had taken was unreliable and was a waste of money.

Finally, something snapped. I found a Female Gynaecologist based at the Cheltenham Nuffield, rang the Doctor and asked him to refer me. He told me that there was no need, and that I should just go back on the pill. I was adamant and angrily insisted there was a need and I had an appointment at the Nuffield by the end of the week.

Suddenly everything moved very quickly. After an initial examination the consultant said my womb was very ‘clunky’ for someone my age who hadn’t had children, and she sent me for an internal ultrasound scan. Shortly afterwards I was diagnosed with fibroids in my womb – non cancerous growths of muscle and fibrous cells – and, devastatingly, Endometriosis.

Endometriosis is a chronic and hugely debilitating disease where cells similar to those in the lining of the womb are found elsewhere in the body. Each month, these cells react in the same way to those in the womb; simply, they build up, then break down and bleed. Unlike the cells in the womb, this blood has no way to escape so the blood forms scar tissue and can cause severe pain and inflammation. It can cause very painful, long, heavy periods and can lead to infertility, fatigue, bowl and bladder problems, depression and isolation, and pain during sex.

Most commonly, endometriosis is diagnosed through a laparoscopy – keyhole surgery through the stomach – however I had a large endometrioma – a ‘chocolate’ cyst formed by the scar tissue, in my left ovary. I was told that these show up differently to other types of ovarian cyst on a scan and so the endometriosis could be diagnosed pre surgery.

My own experience of diagnosis was difficult. As well as feeling relieved because finally I knew what was wrong, I felt an enormous sense of loss and confusion. The body that I thought I knew so well was failing me, I felt like it no longer belonged to me and my dream of becoming a Mummy one day seemed suddenly distant, even impossible. At every appointment I was asked if my boyfriend and I planned to have children, to which my answer was always yes, and every time I was told that endometriosis can have negative affects on fertility and the chances that I could ever become pregnant could be highly unlikely.

In January 2016 I had a laparoscopy and a hysteroscopy to remove the endometrioma, the fibroids in my womb and to treat all the of the endometriosis elsewhere. It was on my bowel, my bladder, the outside of my womb, both ovaries, my fallopian tubes and the pouch of douglas – somewhere I never knew existed until now! All the while the consultants message was clear – if we wanted to have children, we needed to start trying as soon as I’d recovered from my operation.

All the while, my diet and lifestyle became more and more healthy. It felt like the one thing I had control over and everything I read, said that it could have a positive effect on the endometriosis. Nutrient deficiencies, inflammatory foods, poor gut health and environmental toxins all effect endometriosis, and if controlled, the disease can be managed and fertility increased. I work hard at being healthy – and I do find it hard – especially because I love wine and chocolate and pizza as much as the next girl. I certainly have the occasional blip – I eat chocolate coins at Christmas and I must bake with sugar at Easter but in the main, I try to be as natural as possible.

My operation was on 6 January 2016 and by March we found out I was pregnant: a complete miracle and the happiest and most magical news of our lives. Daisy was born on 1 November last year. She has brought so much love and laughter to our lives ever since and I have never felt more blessed than I do now. I’m so thankful for Mark and for our beautiful baby girl. Looking back to Christmas 2015, in my wildest dreams I couldn’t have imagined how lucky we would be as to have our very own little baby. I was incredibly privileged to have private healthcare with work which enabled me to be seen more quickly, but had it not been for Laila, my nutritionist, I would never have been diagnosed with endometriosis and a few years’ time would have been too late.

Current stats say that around 2 million women in the UK suffer from endometriosis and 10% of women worldwide, however with an average diagnosis length of 7.5 years, it’s likely that there are a lot more women suffering whilst unaware of the condition. Since my operation 15 months ago, I know four ladies personally that have also been diagnosed, post surgery after years of discomfort, pain, endless appointments and being made to feel like they were making a fuss over nothing.

There is a lot of coverage in the press at the moment and a number of high profile sufferers such as Lena Dunham, Louise Redknapp, Daisy Ridley, Padma Lakshmi, Dolly Parton, Susan Sarandon, Tracey Emin….. the list is long – have all spoken about the condition. It’s SO important to find healthcare professionals that you can trust, that you believe in and that believe in you. We know our own bodies better than anyone and we must insist on finding a diagnosis when we are adamant that something is wrong.

The NHS staff I encountered throughout my pregnancy – my community midwife, the hospital midwives, the consultants, the surgeon, the anaesthetist, the nurses, the health visitors – were all absolutely wonderful. But had I listened to my usual Doctor I would never have met any of those wonderful people, I would never have met Laila and we would never have met our beautiful Daisy.

A Guest Blog from Milly Hale

About Milly

Milly lives in Cheltenham and is fiance to Mark and mama to 6 month old Daisy. She is currently on maternity leave from her busy job working for a world famous artist. She loves all things home – making, baking, growing and sewing and has her own creative blog called The Milly Pad. You can read her blog here and find her on instagram.

If you are suffering from endometriosis or finding the diagnosis difficult, endometriosis-uk.org is a fantastic organisation. We must start talking more about the disease in order to raise awareness, support and understanding.



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