"People mistakenly believe because you’ve had surgery, you should be fine now. I still have a lot of pain."

MY EXPERIENCE

My experience I started getting problems from my first period aged 13. However I wasn’t diagnosed until aged 19. My endometriosis resurged about 18 months ago. How many ways can you say ‘Ouch?’ The main symptom is pain. I have chronic pain in the pelvic area, painful menstruation, pain when my bladder is full and pain when I empty. I also have referred pain in my back, thighs, hips and knees. I have been treated with an injection in my stomach, the rest of my treatments have been surgical and tablets, liquids, patches - all to treat the pain. I have a series of different types of painkillers and dependent on the severity of the pain and the area of the pain, I use different ones. Sometimes, a combination of them. It’s become quite a skill determining what works.

I have Stage 4 endometriosis so I had a bowel resection in August 2013. I think one of the things I’ve struggled with is that people mistakenly believe because you’ve had surgery, you should be fine now. I still have a lot of pain. Also putting on a brave face can be hard. It’s seven steps from my bedroom to my bathroom. I know this because I’ve counted them, because on a regular basis I steel myself to make the walk.

ENDOMETRIOSIS AND A ‘NORMAL’ LIFE

Life hasn’t felt “normal” for quite sometime. As a trained nurse, I know and have been taught the value of talking therapy. Endometriosis does not only affect you: it affects your family, your partner, your children, often your siblings – in fact, I have a close relative with endometriosis, too. Dependent on how we may feel, the affects can be transferred without intention onto other people in the family. No area of my life is untouched, even intimacy.

If you experience pain during sex it can be difficult for your partner too, men don’t want to cause you pain, so lots of talking about it together helps - it’s just making sure you take the little steps to help make your situation that little bit lighter. My family help out a lot with tasks which I am unable to do at the moment and this helps to alleviate some of the strain on me. I try to remain as active as I can and to just take one day at a time.

- Dorette

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"Doctors told me that due to low hormone levels, it was unlikely that I would carry the baby full term."

MY EXPERIENCE

I was first diagnosed with endometriosis in Colombia – where I grew up – when I was 27, at the time I had no partner but had been advised to have children as soon as possible or I may have problems conceiving. However, sometimes the time just isn’t right to have babies straight away.

When I was 31, I did then meet my husband so it became an option. I became ill and was brought into hospital with appendicitis. When doctors investigated, they suspected I had endometriosis in my appendix. I was soon brought in for a laparoscopy to tell for sure, but it was cancelled. At my appointment for a laparoscopy I had a blood test which showed I was pregnant. Doctors told me that due to low hormone levels, it was unlikely that I would carry the baby full term. They suspected that I would have my period within the month and a miscarriage. They were correct – I miscarried and lost my baby.  In light of what I’d been advised – that I should not too wait long to have children - this was really upsetting; I had the further challenge of trying for another baby and of conceiving again.

The investigations into my endometriosis showed I had Stage 3 endometriosis already. I was given surgery. Soon after, I became pregnant again, naturally. My baby girl, Sophia was born 12 months ago and she is really precious. 

HAVING MY BABY

Having recently had my baby I wanted to breastfeed. Breastfeeding has been a brilliant experience, mostly because I have not had any periods! I have been pain-free and this has been a real break from normality. When trying to get pregnant I researched a lot about endometriosis and went on many websites to find out more. I tried acupuncture for about three or four months and took supplements. I also took up Yoga and ate more healthily than before.

I hope to have another baby soon after I stop breastfeeding, and intend to take up the same measures to keep me to be at my best for conceiving. I’ve been studying to be a health coach and I hope one day be able to help other women who’ve suffered from endometriosis.

- Gloria

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"I have nothing to lose by empowering myself to take control and never letting my endometriosis win".

MY EXPERIENCE

I first experienced severe gynaecological pain when I was only 12, before I’d even started my periods. This crippling pain continued to visit me every month for a whole year until I eventually started my periods. Once I started my periods, the pain got even worse. It reached the point where I experienced it every day of the month and was rushed into A&E twice monthly (once during my period and once during ovulation) and would often be given morphine as pain relief. I kept being told it was ‘normal teenage cramps’. I also lost a lot of blood, easily using up to 12 tampons and pads an hour. Due to the amount of blood lost, I became anaemic and suffered from chronic fatigue.

I was 14 and my quality of life was non-existent; I could no longer go to school because of the pain, chronic fatigue and being in and out of hospital all the time. I finally had a laparoscopy in 2010 and diagnosed with endometriosis. I cried with happiness when I was diagnosed with endometriosis because it meant my symptoms were no longer 'phantom' pains but actually a real condition! Since my diagnosis I have been on GnRH  for four years which has allowed me to complete my school education.

HOW LIVE WITH MY ENDOMETRIOSIS

At times having endometriosis has been isolating, debilitating and restrictive: I have never known adult life without it. I know I wake up in pain most nights but whether I like it or not, my endometriosis inadvertently shapes my life and who I am.

Every day I dare myself to challenge my endometriosis, be it teaching someone about it, empowering a fellow sufferer or breaking a taboo by simply talking about it. I became an ambassador for Endometriosis UK because I wanted to help the charity to continue to educate, empower and break down the taboos in anyway I could.

Eventually if enough of us tap the wall it has got to tumble — and it doesn't matter whether it is for us or for our grandchildren — we cannot suffer in silence forever. 

- Alice