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By (user no longer on site) OP
over a year ago
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Any fellow sufferers?
It’s been endo awareness month this month. I hope you’ve all had a pain free and happy month.
Posting this for ladies to chat rant connect and share awareness and stories and meet other warriors.
Top 4 on the list of most painful conditions to have. Go us! |
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I haven’t suffered with this myself but I did suffer with very heavy periods (obviously not the same)
I can’t imagine how debilitating this condition must be and I feel much empathy towards those who do suffer with it, it’s not just heavy periods it can affect other systems as well
Ms  |
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By *ad NannaWoman
over a year ago
East London |
Mine was horrendous until I had a hysterectomy. I had huge fibroids with endo that was slowly depleting my iron to heart attack levels.
I still had bleeds after the hysterectomy but the pain was gone.
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"I was only diagnosed last year. I’ve got PCOS and endo and now a large cyst. X"
It’s pants!! I had fibroids & adenomyosis too but had never been told about them 
You will have to fight for treatment/medication - I was only taken seriously when I took my dad to an appointment with me 
J x |
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"Obviously I'm not, but a friend of mine is, and I've seen first hand the effect (that's putting it lightly) it has on her and her body. "
Exactly the same - big hugs to you all. Know how horrible it can be x |
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"I was only diagnosed last year. I’ve got PCOS and endo and now a large cyst. X
It’s pants!! I had fibroids & adenomyosis too but had never been told about them
You will have to fight for treatment/medication - I was only taken seriously when I took my dad to an appointment with me
J x"
The last part of your post is telling and explains why it takes many women years to get taken seriously and diagnosed.
I have never suffered from endometriosis but am all too aware of the low levels of diagnosis and can only imagine the impact this has on suffers.
Sadly, women are still not taken seriously enough my many in the medical profession. |
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By (user no longer on site) OP
over a year ago
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It takes on average 12 years to get diagnosed. I’ve been palmed off so many times being told it’s just period pain or
It’s just heavy period. Or “abdominal” pain. Etc. It took a very savvy gp to refer me and then me pushing to get my diagnostic lap. It’s shocking. I’m an admin of a support group and so many of us ladies have had the same journey. If this was a mens issue they’d throw money at it and research but nope. X |
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"It takes on average 12 years to get diagnosed. I’ve been palmed off so many times being told it’s just period pain or
It’s just heavy period. Or “abdominal” pain. Etc. It took a very savvy gp to refer me and then me pushing to get my diagnostic lap. It’s shocking. I’m an admin of a support group and so many of us ladies have had the same journey. If this was a mens issue they’d throw money at it and research but nope. X"
Unfortunately, this is the case for many "women's issues". I recently had a gynaecologist suggest that I had mistaken my clitoris for a lump I was concerned about ... he was very lucky that he only got my sharp tongue in response 
I agree, if men suffered from endometriosis like issues, it would get diagnosed an awful lot faster. |
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"I was diagnosed in 1995 aged 19. Finally had a total hysterectomy in 2019 after jumping through so many hoops. At 43 I got my life back!!
J x"
That's utterly disgraceful! I can't imagine them leaving a man suffering with something equally awful for that long. |
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"I was diagnosed in 1995 aged 19. Finally had a total hysterectomy in 2019 after jumping through so many hoops. At 43 I got my life back!!
J x
That's utterly disgraceful! I can't imagine them leaving a man suffering with something equally awful for that long."
They wouldn't it's only "histerical women" that have to suffer for years...
You might have gathered it a big frustration of mine. |
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By (user no longer on site)
over a year ago
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So refreshing to see this being openly talked about. I got fobbed off by some (not all) and finally diagnosed (officially) after 17years. The only saving grace is that in the last two years I have met an amazing specialist consultant without having to struggle like I see some when needing a specialist. She honestly couldn't have done any more for me - this needs to end though. Too many people are struggling with this debilitating disease. ?? |
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By (user no longer on site) OP
over a year ago
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"So refreshing to see this being openly talked about. I got fobbed off by some (not all) and finally diagnosed (officially) after 17years. The only saving grace is that in the last two years I have met an amazing specialist consultant without having to struggle like I see some when needing a specialist. She honestly couldn't have done any more for me - this needs to end though. Too many people are struggling with this debilitating disease. ??"
It was talked about on this morning, this morning lol. Yes much more awareness needs to be done. It is not normal to be in pain like we are or bleed how we do! We have to find out voices. I’m glad now that I can advocate for other women x |
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By (user no longer on site)
over a year ago
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Theres so much of this going on. Women just aren't taken seriously.
I had to tell my gp, if they didnt help me I would take my own life!! Sad that you have to stoop that low to get the help you need  |
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By *B69Woman
over a year ago
Wiltshire |
I was diagnosed very quickly 19 years ago, had a fantastic specialist who acted quickly, I had surgery as you could feel the tissue and was spreading, was a long recovery and similar scar to my C section. (I think it’s done by laparoscopy now) two years after that while having another C section they had another look around and removed more tissue that had showed up. Still get the odd pain now but liveable and realise how lucky I was to of had that specialist.
I feel for ladies suffering, but do push for treatment, it changed my life x |
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By (user no longer on site)
over a year ago
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I don't know the struggle however I know people who have endometriosis and it is not pleasant to say the least.
What upsets me most is lots of women get fobbed off for years as this is what happened with my friend she suffered for 10 years and got told there was nothing wrong with her until she ended up collasing with the pain. |
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I have adenomyosis which is the lesser known disorder similar to endo. The last 18 months have been horrendous and I am battling with my doctors. For the most part I am asymptomatic but when I have a flare up it is debilitating. I work a physically demanding job, am active and am a rubbish patient when I’m ill. My GP is awful as I don’t think she understands the impact it is having. I just want my life back. I feel for any other sufferers as I don’t think you can fully appreciate how tough it is both physically and mentally. |
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By (user no longer on site)
over a year ago
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I have had 5 surgeries to remove endometriosis as it kept coming back after the 4th I did some research and found out from the American forums that the laser surgery doesn't remove the roots. Luckily I have private medical insurance through work and I went 2 a endometriosis specialist and he did an excursion which takes it all away and he looks from diaphragm to vagina and found lots of different spots and classed it as grade 4. I have finally been 17 months clear finally after 20 years of on and off pain this has been the longest without pain  its a horrible condition that no one understands unless u suffer with it. Before my last surgery I was on tramadol which is a morphine based medication so I'm glad I used by insurance but I understand I'm very fortunate and the NHS doesn't understand this condition that well.
If anyone wants to talk about it pm me and I will reply hopefully I can help |
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By (user no longer on site)
over a year ago
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Not me, but I have a friend who has it so badly she cannot have kids. She married her husband 11.5 years ago and instantly became step mum to his two kids but they were older (teens I think) she did want to have a baby, but it’s never happened |
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Glad that we have a forum thread for this, the hotwife struggles with endo, it's plagued her for a good few years now, playing with new people can be very daunting if we haven't spoken about things like it before, she isn't a fan of the rough pounding away that you see in many clubs, especially the big open rooms, this kind of play does nothing for her, not to say she's opposed to hard fucking from time to time but definitely prefers the more sensual approach as can quite often, but not always, leave her in pain days after.
Sexual positions can be difficult to attain, like legs over shoulders for instance, where when we play together if she is feeling any pain she can say or we can change positions where as she feels it could be a mood killer with another party.
She can often be made to feel very self conscious about her self when the bloating that comes with endo occurs
Endo and the swinging scene can be very difficult |
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