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
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Meriel_Owen
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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
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
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
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.
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
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
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.
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...
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.
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
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
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.
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.
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
My wife has been suffering from this for 3 years now and one word i can give to this is "helpless"
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'
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.
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!
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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