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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ReplyDeleteCognitive behavioural therapy can substantially reduce the symptoms of many emotional disorders - clinical trials have shown this. For some people it can work just as well as drug therapies at treating depression and anxiety disorders. And the benefits may last longer.
ReplyDeleteEndometriosis is not an emotional disorder. Please read the post, This Is NOT In My Head, http://endowriter.blogspot.com/2010/07/this-is-not-in-my-head.html.
ReplyDeleteI see a lot of them saying changing your diet helps... HOW?? I'd really like to know! I've had endo for 10 years and my diet has NEVER helped anything. I can't even understand the logic behind this theory. Your diet has nothing to do with your endometrium shedding and attaching itself to other organs???! I'm confused!
ReplyDeleteAnyway, I'm enjoying your blog and it gives me some hope and comfort :)
Hi Manduhh - there's only very limited evidence at the moment about diet, but with endo, it's important to remember that evidence is also limited because of lack of research. Anecdotally, lots of women have found diet helps. As far as I understand it, this can work a couple of ways:
ReplyDelete* inflammation - some food stuffs, such as wheat, can make inflammation worse. This creates the pain and also the swelling. Reducing these food stuffs won't reduce the endometrium, but can reduce the inflammation it causes, which helps
* digestion - because endo is usually in the pelvic area, digestion is often painful. Food that moves through your system easily and more quickly can then reduce the amount of pain.
I was very hesitant to cut out wheat, until I spoke to a friend of mine who's an immunopathologist and studies macrophages, which are responsible for inflammation. Although he couldn't find any advanced studies, he said that from a cellular level it made absolute sense. I then tried it, and found an instant improvement: I was less swollen, and in less pain.
So little is still known, so it's worth giving things a try and seeing what different things work for you, but knowing we don't have a huge amount of info on the subject.