In one word, can you describe what living... - Endometriosis UK

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In one word, can you describe what living with endometriosis feels like?

Meriel_Owen
Meriel_Owen
42 Replies

I'm 30 and have endometriosis.

Two laparoscopies and excision of endo, got the mirena coil, yet still living with symptoms.

I'm interested in telling my story, as its not just my story, its millions of women's stories. So, I'm writing an article that will hopefully get published. I'm interested in the array of emotions this condition brings to the surface - the treatment pathways, the pain, the fighting to be seen, the fatigue. So if you can boil it all down into one word (I know, seems impossible at first...), I'll see what we come up with, and if there's a correlation (I think there probably will be!) then it will add a bit of "project research" to my article. Plus, it helps us all to know we're not alone...

Thanks ladies <3

42 Replies
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farahziya

Hey, I'm 35, two laparoscopies also, excision of endo, symptoms now just around my periods.

One word: exhausting

That's both mentally and physically; the pain, pushing for diagnosis, waiting, explaining to others, repeating to those that don't get it, struggling with people whom say "it'll be okay", feeling guilty about withdrawing from social events, taking time off work, recovery from laps.

Your article sounds like it'll be awesome, hope it gets published x

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Meriel_Owen

Totally, I hear ya.

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AllthatGlitters

Hi I have a variety of symptoms and have been treated disgustingly by an employer due to being very ill. So much so that I had to take legal action as I lost my job. I would say in the eyes of an employer that one word would be “unemployable”, however my one word as an endo and adenomyosis sufferer Would be that I/we are “fighters” xx

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Meriel_Owen

yes! we are! well done for fighting your employer . - it's ridiculous that you had to in the first place.

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AllthatGlitters

Thank you. They are no longer my employer! You would think other women would have compassion but they don’t, what comes around goes around I say x

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MrsWalshy

"Exhausting" was the first word that came into my head too...

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Knina
Knina
in reply to MrsWalshy

+1

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PaoPetite

Trauma!

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EndoJaz

Hi.. my word is abandoned as that’s how I feel. I am waiting and waiting for my next lap appt after been through so many ops before including hysterectomy and just feel that I am being left to one side in pain. x

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Meriel_Owen
Meriel_Owen
in reply to EndoJaz

really powerful word. it is certainly one I can relate to. so sorry you are in the waiting game. I know how that feels!x

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deanmorgan
deanmorgan
in reply to EndoJaz

So having a hysterectomy didnt actually solve your issues?

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EndoJaz
EndoJaz
in reply to deanmorgan

No the right sided pain continued straight after. I have been told I am imagining it. I am due another lap in March to May time. Suspecting bowel endo. Previous endo was on uterosacral ligaments and pouch of Douglas.

My ovaries were left in due to being 42 at the time.

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RedSloth
RedSloth
in reply to EndoJaz

Same with me! I've been left with R sided pain after a full hyster in 2006. And have been left still taking daily morphine 14 years on. To answer the original question, I have several words, I can't pick just one! Abandoned, cheated, debilitating are a few

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EndoJaz
EndoJaz
in reply to RedSloth

I just feel I have been fed so many lies as I was told that the hyst would cure me and it’s done no such thing. Obviously helped with the bleeding which was horrific but looking back I cannot believe I was left bleeding like that for months and months. My mother in law had a hyst around 30 yrs ago and had it as an emergency as she was flooding but now women are left suffering. I agree with all the other words strongly. So fed up and angry with this pain. Angry at all the drs along the way. 45 this year and been suffering since aged 12. So wrong. Stay strong girls xx

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Thecraftyadder

'Cheated' was my word.

Cheated by my body out of doing all the things I want. I'm talking lifestyle for me but the fertility issue causes hugh emotional trauma for many who just want a family.

Cheated as well by the lack of information and care of the medical profession. We all struggle through so much to be believed, get diagnosed, get treatment and aftercare. I'm sure there isn't a woman with endo out there who doesn't have a story of battling with the system or rubbish things being said to us when we try and get help.

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Meriel_Owen

such a good word! and yes I totally relate to all that you have said.

I'm 30 and ready to try for a baby, but my partner is stalling for practical/financial reasons. I don't want to leave it til much later. So now this condition is affecting my relationship as well as every other part of my life! It's so bloody annoying...

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Addictedtosugar

A bit strong but 'devastated' is my word, devastated I couldn't have children, devastated most people have never even heard of this condition which has affected every part of my life and devastated that I'm still suffering despite giving up all that makes me a woman.

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Meriel_Owen

Yes, that's something I feel really strongly too. It's our womanhood, our fertility, that gets affected or stripped away without our control. It's an extremely devastating thing, and I would encourage you not to downplay it...x

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Gwen172

Debilitating is my choice of word.

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Yalda

First diagnosed in 2007. Since then I went through 4laprascopies, removal of left flopian tube, right ovary. Lots of different medications. I have also other symptoms: extremely painful periods, anaemia, tiredness, painful bowel movements and mental health problems. As result of this horrible disease I went through IVFs and fertility issues. I have both endometriosis and adenomysis and they changed me as a person. For me in one word: Hell

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Meriel_Owen
Meriel_Owen
in reply to Yalda

Wow that's a really rough ride, thanks for being so honest...and I can totally relate to what you said. When I went travelling I went through a period of time almost symptom free, and now its like looking back on a different person.

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KDA0510

My word is 'broken'. I have had stage 4 endo as well as recently discovering I also have adenomyosis. The condition has changed me completely, I feel like a ghost of my former self. I have had 2 laparoscopies, the removal of fallopian tube and 2 rounds of IVF later; I feel like I am just a broken person.

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Meriel_Owen
Meriel_Owen
in reply to KDA0510

It's so hard not to feel defined by this disease. All I can offer is that I totally understand, and I hope you find a way to feel like you again.

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KDA0510
KDA0510
in reply to Meriel_Owen

Thanks lovely. Me too. Hubby and I both are taking out a year from fertility treatment just to get back to the 'us' before infertility x

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Meriel_Owen
Meriel_Owen
in reply to KDA0510

So great you are sticking together through it all.x

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KindnessandHope

I was so sorry to read this and can resonate on so many levels. Enjoy your break from fertility treatment and be kind to yourself. Kindest wishes x

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vixstar84

Hi,

Mine would be 'relentless'.

I'm 35, have had 4 laparoscopies over last few yeaRs by an endo excision specialist inc hysterectomy and most likely needing a 5th soon to remove more RV endo and quite likely ovaries. Life has gone from one extreme to the other as my 'story' is quite different from others. I never had bad periods growing up but a routine Colposcopy and LLETZ literally caused everything to change overnight a few years back. As my Gyny put it - it caused widespread Stage IV endo that had been lying dormant for probably around 14 years to erupt and it was the start of 3 years from hell which is still ongoing - so it definitely feels relentless!

Also agree with all the other ladies comments, it would be interesting to see what men gave as their one word - whether it's brothers, partners, dads etc.

Good luck with the article, great idea as writing can be quite cathartic! x

1 like
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Custard32
Custard32
in reply to vixstar84

That was the word that came to me first x

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deanmorgan

My wife has been suffering from this for 3 years now and one word i can give to this is "helpless" :-(

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Meritxelll

resilience

not a lot of people can withstand pain and we have resilience. when ppl complain about having flu or a minor injury you think 'compared to endo, its nothing'

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Marisa97

“Demon”

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KindnessandHope

Hello,

My one word would be 'heartbreaking'.

Like so many other women with endometriosis it has consumed my life and despite spending ten of thousands on IVF I am left with not being able to have children, which was always my dream.

I am 38 and it took nearly 8 years for me to be finally diagnosed with stage 4 endometriosis. Fortunately I am blessed to have private healthcare through work and was able to find a specialist Obstetrician and Gynaecologist who expedited surgery for me in December 2018 with excision of stage 4 DIE endo, ovarian fibroids, adhaesiolysis and removal of endometrial polyp. He was amazed my previous laproscopy never revealed any of this. I will in due course have to have another op on my bowel.

Sadly the NHS are not upskilled to recognise the symptoms. It is heartbreaking to be told just to take painkillers and that lots of women suffer with heavy periods and associated pain and to dismiss continuous fainting. It is heartbreaking to doubt your own resilience and pain threshold. It is heartbreaking when everyone else around you has children and you feel like a failure as a woman.

Very best of luck with your article. I hope it creates awareness and fills others with hope that there is support.

Kindest regards and strength to all :-)

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Lapinblanc88

Infertility 😔

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KindnessandHope

I feel your pain so much :-(

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Meriel_Owen

thanks for all your replies and encouragement ladies. If the article gets published I'll post the link on here.

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cmbxm

Sh*t - In every aspect, the pain, the non-existent sex life, the infertility which is a new one for me, the having no control over my good and bad days, the constantly cancelling plans or calling in sick to work cos I physically can’t move because I’m bleeding so bad, it’s just sh*t!

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newstart2020

'purgatory'

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Littlepeax

Depressing

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affecting_meg

Lonely.

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EndoEffect

Frustrating

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jasne77

impossible

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Emmarussell

My word is debilitating! It's such a struggle but you have to embrace the better and good days because this illness will make you depressed even suicidal. Another two word I would use is- life destroying especially with infertility 😢 keep smiling and keep going is what I say! Xxxx

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