Wednesday, 8 September 2010

My worst, I've learnt ~ quotes from women with endo

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.


  1. This comment has been removed by the author.

  2. Cognitive 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.

  3. Endometriosis is not an emotional disorder. Please read the post, This Is NOT In My Head,

  4. I 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!
    Anyway, I'm enjoying your blog and it gives me some hope and comfort :)

  5. 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:
    * 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.


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