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Endometriosis awareness.

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By *imply Dee OP   Woman
over a year ago

Wherever

I’ve been inspired by reading in the news about Leah Williamson struggle with endometriosis.

As a person who suffers with this debilitating condition, I wish there was more awareness about it.

It took me almost 7 years to get finally diagnosed, as the condition itself is being often misdiagnosed, disguised as early menopause or even ignored.

It took a toll on my everyday life, my sex life and mental health being affected the most.

I’m still the same woman I used to be but unfortunately, my body thinks otherwise.

Well done for celebrities like Leah to be openly talking about it.

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By *ikeC81Man
over a year ago

harrow

I know about it - a friend has it so I kinda knew a lot about it already

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By *naswingdressWoman
over a year ago

Manchester (she/her)

I'm sorry you've suffered so much.

I think a lot of gynaecological issues are swept under the carpet and we've been told that it's just our lot in life.

Ten years ago, a doctor refusing to recognise my pain (despite abnormal results on scan) led to a significant delay in treatment, which should have resulted in my death (untreated, symptoms to death should be about a week. It took six weeks for me to get the help I needed). It still haunts me. (Endometriosis was part of the finding on surgery, although it wasn't a primary cause)

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

I've listened to Hilary Mantel reading her autobiography in Radio four. She was dismissed, diagnosed with mental illness and ignored for years with what turned out to be endometriosis. Shocking!

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By *imply Dee OP   Woman
over a year ago

Wherever


"I know about it - a friend has it so I kinda knew a lot about it already "

I was shocked to find out how many women are affected by this condition.

Hugs to your friend, hope she doesn’t suffer badly x

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By *imply Dee OP   Woman
over a year ago

Wherever


"I'm sorry you've suffered so much.

I think a lot of gynaecological issues are swept under the carpet and we've been told that it's just our lot in life.

Ten years ago, a doctor refusing to recognise my pain (despite abnormal results on scan) led to a significant delay in treatment, which should have resulted in my death (untreated, symptoms to death should be about a week. It took six weeks for me to get the help I needed). It still haunts me. (Endometriosis was part of the finding on surgery, although it wasn't a primary cause) "

So sorry to hear that.

It’s truly unbelievable, but glad you got it sorted.

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By *imply Dee OP   Woman
over a year ago

Wherever


"I've listened to Hilary Mantel reading her autobiography in Radio four. She was dismissed, diagnosed with mental illness and ignored for years with what turned out to be endometriosis. Shocking!"

It is unfortunately true.

I’ve been told I have hernia by some adventurous doctors (all males), insisting to push it in! Imagine that.

I really wish there was more awareness about it.

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By *B69Woman
over a year ago

Wiltshire

I’d never heard of it until a great male doctor diagnosed me over 20yrs ago, I thought it was just how my periods were, 2 surgeries and 2 kids later I’m very fortunate not to have the symptoms I once suffered with. I realise how lucky I was reading how some women are suffering today

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By *imply Dee OP   Woman
over a year ago

Wherever


"I’d never heard of it until a great male doctor diagnosed me over 20yrs ago, I thought it was just how my periods were, 2 surgeries and 2 kids later I’m very fortunate not to have the symptoms I once suffered with. I realise how lucky I was reading how some women are suffering today"

Glad you were diagnosed swiftly and your symptoms are now manageable.

Heavy and painful periods are never ok! We’ve been unfortunately made to believe that they are.

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By (user no longer on site)
over a year ago

It is very misunderstood in many areas of the medical profession

I learned how bad it could be from a patient we attended who was suffering with a severe bout of it.

I've never seen someone in so much pain and even a maximum dose of morphine didn't touch it. Ended up blue lighting her in to get her some stronger pain killers asap.

I late had a crewmate who suffered from it - those experiences certainly made me more empathetic to sufferers

Needless to say it was something not taught during training.

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By *imply Dee OP   Woman
over a year ago

Wherever


"It is very misunderstood in many areas of the medical profession

I learned how bad it could be from a patient we attended who was suffering with a severe bout of it.

I've never seen someone in so much pain and even a maximum dose of morphine didn't touch it. Ended up blue lighting her in to get her some stronger pain killers asap.

I late had a crewmate who suffered from it - those experiences certainly made me more empathetic to sufferers

Needless to say it was something not taught during training.

"

Thank you for your input from both male and professional perspective, it’s very misanderstood indeed.

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By (user no longer on site)
over a year ago

My daughter is a little miracle . We weren’t aware how much miscarriage this condition can be . There was one before her . But she made it and she is the best lovely girl ever .

Is very hard work as it turns the lady hormones and can drive to diabolical moods . Wich can bring severe emotional pain in the relationship …and her mother has it really bad . And the circle of top experts specialists etc is not that big . Is months n months to have a chance to be seen by the specialist .

Drama ruinned our relation . Is very painful . But we are very so lucky have our beautiful little girl. So so lucky . She is so lovely, not just cause is my kid … but she is . Our little Destiny is a little miracle . Bless her .

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By *imply Dee OP   Woman
over a year ago

Wherever


"My daughter is a little miracle . We weren’t aware how much miscarriage this condition can be . There was one before her . But she made it and she is the best lovely girl ever .

Is very hard work as it turns the lady hormones and can drive to diabolical moods . Wich can bring severe emotional pain in the relationship …and her mother has it really bad . And the circle of top experts specialists etc is not that big . Is months n months to have a chance to be seen by the specialist .

Drama ruinned our relation . Is very painful . But we are very so lucky have our beautiful little girl. So so lucky . She is so lovely, not just cause is my kid … but she is . Our little Destiny is a little miracle . Bless her . "

So sorry to hear about your relationship.

Enjoy every single moment with your daughter

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By *za123Man
over a year ago

cardiff


"I’ve been inspired by reading in the news about Leah Williamson struggle with endometriosis.

As a person who suffers with this debilitating condition, I wish there was more awareness about it.

It took me almost 7 years to get finally diagnosed, as the condition itself is being often misdiagnosed, disguised as early menopause or even ignored.

It took a toll on my everyday life, my sex life and mental health being affected the most.

I’m still the same woman I used to be but unfortunately, my body thinks otherwise.

Well done for celebrities like Leah to be openly talking about it.

"

My wife is 68 and lived with it all her life. It’s very painful when making love. I would gladly take the pain for her so that she could have one night of pain free sex. We haven’t made love for 15 years. I’m not bothered about me, I just wish I could give her the pleasure she’s missing.

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By *inky_couple2020Couple
over a year ago

North West

I may have endometriosis in addition to adenomyosis. Adenomyosis is where womb lining grows within the muscle of the wall of the womb. Because there's nowhere for it to go, the muscle wall just gets more and more distended and swollen and painful. The only cure is hysterectomy, but I can't have one at the moment. I also have triple pelvic organ prolapse (including my womb) and so dealing with my periods etc is an absolute nightmare. I really struggle to get through the week each month that I bleed (like an actual stuck pig). And then there's the fortnight after ovulation where new womb lining is growing in my uterine muscle. And then there's my prolapses. Urgh

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By (user no longer on site)
over a year ago

Here because mine has flared up again. It took so much advocating for myself to even be taken seriously or referred to the specialist and have surgery.

Back at this point again, luckily I have a free pass for a referral whenever it is needed so waiting for an appointment to see where we go. I have other issues with my uterus too so I've requested a hysterectomy. I've fought for years to have one so fingers crossed they take me seriously this time. I know a hysterectomy doesn't cure endo but if I can eradicate these other problems it'll be easier to manage mentally

F

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By (user no longer on site)
over a year ago

I always thought my periods were just heavy until I went to the docs in April 2021 and said I have a suspicion something just isn’t right. Met the gynae in sept 2021, surgery in November 2021 and diagnosed with endo and adenomyosis. In that surgery they removed my fallopian tube and lasered the endo. Consultation in may 2022, agreed to have a hysterectomy to solve the adenomyosis. Had that done March 2023.

Given the whole thing from initial appointment to final surgery was 2 years I am incredibly lucky to have been sorted out so quickly

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By *inky_couple2020Couple
over a year ago

North West


"I always thought my periods were just heavy until I went to the docs in April 2021 and said I have a suspicion something just isn’t right. Met the gynae in sept 2021, surgery in November 2021 and diagnosed with endo and adenomyosis. In that surgery they removed my fallopian tube and lasered the endo. Consultation in may 2022, agreed to have a hysterectomy to solve the adenomyosis. Had that done March 2023.

Given the whole thing from initial appointment to final surgery was 2 years I am incredibly lucky to have been sorted out so quickly "

Do you mind me asking how you've been since the hysterectomy? I'm at the point where I need to decide what to do next and it's hard because I'd need a full hysterectomy to resolve my issues, but I'm only 37. Plus I'm hypermobile so risk of vaginal vault prolapse etc.

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By (user no longer on site)
over a year ago


"I always thought my periods were just heavy until I went to the docs in April 2021 and said I have a suspicion something just isn’t right. Met the gynae in sept 2021, surgery in November 2021 and diagnosed with endo and adenomyosis. In that surgery they removed my fallopian tube and lasered the endo. Consultation in may 2022, agreed to have a hysterectomy to solve the adenomyosis. Had that done March 2023.

Given the whole thing from initial appointment to final surgery was 2 years I am incredibly lucky to have been sorted out so quickly

Do you mind me asking how you've been since the hysterectomy? I'm at the point where I need to decide what to do next and it's hard because I'd need a full hysterectomy to resolve my issues, but I'm only 37. Plus I'm hypermobile so risk of vaginal vault prolapse etc. "

I’m only 7 weeks in but so far so good! I will say it’s a very painful operation and knocked me off my feet for a good few days after. But, I’ve now missed three periods where I’ve not had to bleed to death or be in amazing pain so I’m happy so far

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By *4bimMan
over a year ago

Farnborough Hampshire


"I always thought my periods were just heavy until I went to the docs in April 2021 and said I have a suspicion something just isn’t right. Met the gynae in sept 2021, surgery in November 2021 and diagnosed with endo and adenomyosis. In that surgery they removed my fallopian tube and lasered the endo. Consultation in may 2022, agreed to have a hysterectomy to solve the adenomyosis. Had that done March 2023.

Given the whole thing from initial appointment to final surgery was 2 years I am incredibly lucky to have been sorted out so quickly

Do you mind me asking how you've been since the hysterectomy? I'm at the point where I need to decide what to do next and it's hard because I'd need a full hysterectomy to resolve my issues, but I'm only 37. Plus I'm hypermobile so risk of vaginal vault prolapse etc.

I’m only 7 weeks in but so far so good! I will say it’s a very painful operation and knocked me off my feet for a good few days after. But, I’ve now missed three periods where I’ve not had to bleed to death or be in amazing pain so I’m happy so far "

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By *inky_couple2020Couple
over a year ago

North West


"I always thought my periods were just heavy until I went to the docs in April 2021 and said I have a suspicion something just isn’t right. Met the gynae in sept 2021, surgery in November 2021 and diagnosed with endo and adenomyosis. In that surgery they removed my fallopian tube and lasered the endo. Consultation in may 2022, agreed to have a hysterectomy to solve the adenomyosis. Had that done March 2023.

Given the whole thing from initial appointment to final surgery was 2 years I am incredibly lucky to have been sorted out so quickly

Do you mind me asking how you've been since the hysterectomy? I'm at the point where I need to decide what to do next and it's hard because I'd need a full hysterectomy to resolve my issues, but I'm only 37. Plus I'm hypermobile so risk of vaginal vault prolapse etc.

I’m only 7 weeks in but so far so good! I will say it’s a very painful operation and knocked me off my feet for a good few days after. But, I’ve now missed three periods where I’ve not had to bleed to death or be in amazing pain so I’m happy so far "

I've missed two periods in recent months due to the Prostap injection but now I have to wait for my endo clinic referral before they'll give it me again, so I'm sure I'll be back to the bleeding like a stuck pig again soon. Glad to hear it's going well so far and hope it remains that way for you.

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By (user no longer on site)
over a year ago


"I always thought my periods were just heavy until I went to the docs in April 2021 and said I have a suspicion something just isn’t right. Met the gynae in sept 2021, surgery in November 2021 and diagnosed with endo and adenomyosis. In that surgery they removed my fallopian tube and lasered the endo. Consultation in may 2022, agreed to have a hysterectomy to solve the adenomyosis. Had that done March 2023.

Given the whole thing from initial appointment to final surgery was 2 years I am incredibly lucky to have been sorted out so quickly

Do you mind me asking how you've been since the hysterectomy? I'm at the point where I need to decide what to do next and it's hard because I'd need a full hysterectomy to resolve my issues, but I'm only 37. Plus I'm hypermobile so risk of vaginal vault prolapse etc.

I’m only 7 weeks in but so far so good! I will say it’s a very painful operation and knocked me off my feet for a good few days after. But, I’ve now missed three periods where I’ve not had to bleed to death or be in amazing pain so I’m happy so far

I've missed two periods in recent months due to the Prostap injection but now I have to wait for my endo clinic referral before they'll give it me again, so I'm sure I'll be back to the bleeding like a stuck pig again soon. Glad to hear it's going well so far and hope it remains that way for you. "

Thank you and hopefully you’ll get there too!

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