If you want to know what endo is like, read this. If you want to know you're not alone with it, read this.
For the Filament article on endometriosis, I emailed endometriosis groups to get feedback from women on their own experiences. I asked what the worst aspect for them was and one thing they'd learnt that they could pass on to other women. The responses flooded in; reading them is devastating, sometimes uplifting, and very eye-opening. As they couldn't all be included in the article, and they are incredibly valuable information, I asked for permission to post them here as well. Here are 63 of the responses, edited down for length & proofread but otherwise unchanged.
my worst: Being surprised by the pain every month.
i’ve learnt: I am responsible for my own health.
— Anon
my worst: Being treated like I was making it all up
i’ve learnt: Don't get fobbed off: be assertive and persistent with the doctors
— Jenny 29 Hull
my worst: Infertility
i’ve learnt: Life goes on.
— Anon, 50, Cornwall
my worst: Having to give up a fulfilling career.
i’ve learnt: Sometimes having to give up the thing that you think defines you, enables you to discover new (and interesting) things about yourself.
— Anon
my worst: The lack of understanding: ‘Endo what?’
i’ve learnt: Things do get better!
— Holly Wadsworth-Hill, 27, Essex
my worst: The unpredictability
i’ve learnt: Yoga and Pilates help
— Rachel, 27, Hove
my worst: The pain, exhaustion and massive emotional impact
i’ve learnt: I'm not alone
— Jo Greenbank, 33, St Albans
my worst: Not always having the energy to be a young and active mum for my children
i’ve learnt: Knowledge really is power
— Michelle Middleton, 32, Silsden
my worst: Explaining to my partner that sex is too painful
i’ve learnt: Don’t believe what your GP tells you - do your own research
— Shelly, 34, Oxford
my worst: The pain – down on my hands and knees.
i’ve learnt: Don’t suffer in silence.
— Jayne, 38, Eaglescliffe, Stockton-on-Tees
my worst: Pain after I orgasm
i’ve learnt: Maca alleviated my symptoms
— Meredith, 37, London
my worst: Chronic-fatigue-like symptoms.
i’ve learnt: Women should know this is not something you should just have to suffer with.
— Eleanor Bland, 23, Lincoln
my worst: Being made to feel I was exaggerating my symptoms.
i’ve learnt: The contraceptive pill helps
— Kelly Davidson, 34, Cannock
my worst: Fertility, pain, constant hormonal roller coaster
i’ve learnt: Take one day at a time
— Lucy Harvey, 23, Burton on Trent
my worst: The unpredictability of when & how bad the pain will be
i’ve learnt: To count my blessings - other endo sufferers can feel worse
— Jami, 33, London
my worst: My employer being unsympathetic
i’ve learnt: Not from my doctor... how much impact diet has
— Luci, 26, Leeds
my worst: Being told I couldn't have children
i’ve learnt: Life is full of possibilities - I had a beautiful baby boy 18 months later.
— Delphi Ellis, 35, Milton Keynes
my worst: Pain. And not being believed.
i’ve learnt: If YOU KNOW you're not well, NEVER give up.
— Lucy Palmer, 28, Hadleigh, Essex
my worst: The fear of infertility and the “ticking clock” that I now have
i’ve learnt: Let family, friends and colleagues know when you’ll have a bad week
— Rebecca Simpson, 31, Thame in Oxfordshire
my worst: Pain and the tiredness from dealing with pain
i’ve learnt: Speaking to a counsellor really does help
— Anon
my worst: The pain and emotional distress
i’ve learnt: To have a positive attitude and not feel sorry for myself
— Rachel, 26, Manchester
my worst: Heavy bleeding and bloatedness made it difficult to plan social outings - I never knew how bad I was going to be.
i’ve learnt: To follow a healthy balanced diet
— Anon
my worst: Lack of understanding from friends & family
i’ve learnt: To let go of the life you wanted (fertility) and be happy with your altered future
— Sarah Murtagh, 39, Tring, Herts
my worst: The heartache – seeing people who don’t even want babies get pregnant, and you can’t get pregnant yourself.
i’ve learnt: A great doctor makes it more bearable and gives you hope, in a place where you think hope is non-existent.
— Abbey, West Yorkshire
my worst: Not being diagnosed for 4 years and made to believe I was making it up
i’ve learnt: How important it is to listen to your own body and take action.
— Dawn Hartley,28, Nottingham
my worst: Pain, bloating and emotions
i’ve learnt: Laser surgery does not last; a no-wheat diet helps
— Claire Smith, 42, Burnham, Bucks
my worst: Fatigue, pain, rollercoaster emotions.
i’ve learnt: Nutrition and cognitive behaviour therapy have helped me greatly.
— Olive, 31, Leighton Buzzard.
my worst: Laughter. I once laughed a lot, but fear of pain has made me weary.
i’ve learnt: Never let pain become you.
— Ginny, 28, Maidenhead
my worst: The dismissive nature of many health professionals – especially as I’m a nurse myself
i’ve learnt: To change my diet & use some conventional medications.
— Anon, 36
my worst: Not knowing which is worse, physical pain or mental torment
i’ve learnt: Motherhood has never seemed so precious or elusive
— Charlotte Ball, 26, Tamworth
my worst: Opening your eyes in the morning and waiting because the first 30 seconds will tell you what the rest of your day will be like.
i’ve learnt: Be positive! Lots of surgery scars and no children, but it is not going to kill me.
— Jennie, Grays
my worst: Feeling like no-one understands what I go through, because awareness is so limited
i’ve learnt: Be persistent in trying to get a diagnosis when you know something isn’t right
— Anon, 30, Hinckley. Leicestershire
my worst: Trying to get reasonable adjustments in my job - every day's a fight.
i’ve learnt: Refuse to leave the doctor's surgery until they refer you to a gynaecologist
— Linda, Norwich
my worst: Unrelenting pain, hospital visits and the impact that had on my children.
i’ve learnt: Stay positive - there is light at the end of the tunnel!
— Beverley Glynn, 46, Sheffield.
my worst: Infertility
i’ve learnt: Listen to your body
— Mrs Steffan Squire, 41, Andover, Hampshire
my worst: Delay in diagnosis
i’ve learnt: If controlled with medication, you can lead a normal life
— Lisa Anderson, 35, Southsea
my worst: A pain I can barely describe that takes my breath away
i’ve learnt: Endo doesn't control me, I decide my life
— Cara T, 23, Leeds
my worst: The lack of understanding from others, including medical professionals
i’ve learnt: what's important to me in life (because something has to give)
— Nicola McAteer, 36, Leeds
my worst: 'Trying to go about daily life with a smile on my face' when I'm sad inside and in pain.
i’ve learnt: I couldn't have got through the last 8 years of suffering with endometriosis if it wasn't for my wonderful husband.
— Mrs Sandie Savage, 42, Selsey, West Sussex
my worst: The unknown - never knowing if it will get better or worse
i’ve learnt: To never give up and never doubt myself
— Sarai, 25, Sheffield
my worst: Pain, constant in varying degrees
i’ve learnt: Take charge of your own health and wellbeing
— Kathleen, 33, Donegal, Ireland
my worst: The words ' but you don’t look ill ' when you’re in constant pain
i’ve learnt: To always push your gynae consultant and GP to get the help you need
— Anon
my worst: Having high career aspirations and not being able to achieve them.
i’ve learnt: Give yourself space and time to grieve for what you have lost through endometriosis.
— Fiona, 34, London
my worst: Pain, all the time
i’ve learnt: Give into the pain, when it is maddeningly bad
— Joanna S
my worst: Knowing something was wrong but being undiagnosed for 20 years.
i’ve learnt: Speak to different GPs - one of them will know what's going on
— Kerry Booker, 33, Chandlers Ford, Hampshire
my worst: Society's lack of understanding and knowledge of this crippling disease
i’ve learnt: Never give up. I am now 7 months pregnant
— Siobhan O'Shea, 36, Sutton Coldfield
my worst: Unbelievable pain
i’ve learnt: Keep pushing for answers from GP, gynaecologist, etc – don’t give up
— Louise, 22, Fife
my worst: It takes on average 8 years to diagnose the illness, during which time you tend to try everything suggested and doubt your sanity.
i’ve learnt: If you have an instinct that there is something wrong, do not give up
— Esther, 35 Essex
my worst: Cyclical sciatica (back pain) and intense pain every month.
i’ve learnt: Hysterectomy is not a guaranteed cure
— Jackie Thomson, 42, Windsor
my worst: The effect on my fertility
i’ve learnt: Be open with those around you and join support groups
— Tracy, Suffolk
my worst: The horrific pain and disabling effect on normal life
i’ve learnt: To know my body and be in tune with myself
— Jo Gifford, 33, St Ives, Cambridgeshire.
my worst: Not being able to live a 'normal' life
i’ve learnt: You are not suffering alone
— Beki, 26, Coventry
my worst: 24-hour, 7-day- a-week, 365-days-a-year crippling pain
i’ve learnt: Try a TENS machine & a wheat bag with lavender oil - I'm on strong morphine and those alternatives really do help me. Every woman’s endo is different.
— Emma, 35, Kent.
my worst: Being infertile, horrendous debilitating pain, not feeling like a women
i’ve learnt: Devils Claw, Rose Weed & meditation are excellent for pain management
— Joanne Williams, 36, Huercal-Overa, Spain
my worst: The agonising pain, despite being on the pill
i’ve learnt: It's a common disease that should be treated & investigated
— Claire Reid, 29, London
my worst: Not knowing if it will affect me conceiving
i’ve learnt: Never give up hope and never let it defeat you!
— Lauren Roberts, 23, Newbury Park, Ilford, Essex
my worst: The pain I suffer every day and the lowered fertility
i’ve learnt: You know your body better than anyone else
— Jayne Skudder, 28, Southend on sea, Essex
my worst: The way it can consume your entire life
i’ve learnt: Bikram Yoga helps me stay in the moment and release the frustrations and fear
— Frances Benjamin, 26, Manchester
my worst: Being in such pain that I wanted to slit my wrists but being in so much pain that I couldn’t
i’ve learnt: Self-hypnosis, to manage the pain
— Joanne Burrell, 36, Portsmouth.
my worst: Many needless years of suffering
i’ve learnt: I will never trust a GP – only a specialist.
— Anon
my worst: Seeming infertility and having to start IVF this Spring
i’ve learnt: Trust my instincts and listen to my body
— Colette Todd, 32, Stourport-on-Severn
my worst: The 'hibernation' you put yourself into.
i’ve learnt: To look after myself, my diet and my health
— Elizabeth Jones, 40, Rossett Wrexham, North Wales
Thanks to the women who contributed their answers, and to Endometriosis-UK and the Oxford Endometriosis Support Group for making the survey possible. All quotes are used on this blog by permission and the copyright remains with the original author.
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