" It can feel like you ’re trapped inside a consistence that wo n’t earmark you to turn over your full potential . There are solar day when you mentally want to do things , but your consistency just ca n’t deal it . It ’s like being at warfare with yourself . "
Endometriosisis a condition in which cells similar to the lining of the uterus are present in places of the body where it doesn’t belong, often causing debilitating pain.
Despite 1.5 million people in the UK living with the condition, a shocking 54% of people don’t know what endometriosis is, even though it’s as prevalent as asthma and diabetes.
I have adenomyosis and it use up eight year for me to get diagnosed , which sounds like a long time , but that ’s actually theaverage amount of timeit takes to get a diagnosing .
So, we asked readers with endometriosis to share some of the things they wished other people knew about living with the condition. Here’s what they said:
“Not every month is a bad endo month.”
" Please do n’t dismiss our life-threatening symptoms just because we have a few good days . "
— kyledeterman
“Just because on the outside someone looks fine, it doesn’t mean they are!”
" Looking ' fine ' in front of others may have in mind that when they ’re alone , they have no vigour leave alone to do anything else ! Also , stop telling hoi polloi they ’re audacious function through it – it comes from a good space but , when you are hiding how tough you palpate it pressures you to check that that you look okay ! "
— hannahcharris1
“One of the symptoms can be GI distress.”
" There may be a day where all I can support is toast or soup . Sometimes certain foods do n’t agree with me , and sometimes I necessitate the bathroom for a self-colored hour . It ’s sore and humiliating . Please do n’t say anything or make faces , I ’m already feel those things myself . "
— livelovelaugh071797
“Going to the bathroom is a chore.”
" My scar tissue paper formed around my intestine and bladder , so I go to the bathroom a little more frequently , and spend a little longer in there than others might . "
— fillionfan4002
“Pregnancy does NOT cure it!”
" I had a gynaecologist and three older women try telling me it would . gestation did nothing for it , point were just as hellish after pregnancy . Oh , it can burn up during pregnancy 😭 . "
— southaussiemum1921
“I want people to know is that even though it is ‘very common’, it doesn’t minimise the issue and everyone has a different experience with endo.”
" I do n’t like to talk about it at all or even distinguish people I have it , because when I do quite often ‘ somebody know somebody who had the same thing and they did this to serve or that to help oneself and lots of mass have it . ’ Which form of makes me finger embarrassed to be upset about my personal experience with it .
Even though it is very common , it does n’t stop it badly bear upon the life of each person with it , because even though it ’s one in 10 , being that one in your group of 10 ally having kid and having a normal menstrual biography can feel very disjunct . "
— sailentino
“These are the incisions after my excision:”
“I wish people would just believe us, especially doctors.”
" After six years of going to the MD , one told me I demand to understand that periods are just painful , it ’s normal . Thanks , doc , but I ’ve been having periods for almost 20 years so I know how painful they are opine to be and incapacitate me three days every 21 days is not normal . Oh and it obtain worse after I had a sister , so quit saying that ’s a cure . "
— noimpillagingeverybody
“Don’t ignore the pain, and fight for a doctor who will listen!”
" I was n’t diagnosed until I became so anemic due to severe hemorrhage that I could barely breathe or stand up ( and that was with iron supplements ! ) . Even when I do n’t actually have my period of time I have abdominal pain , and my energy is just gone . I would n’t wish this on my worst opposition . "
— kelseyt4f7b5ff3f
“I wish people knew that it’s about so much more than fertility.”
" Reassuring people that it ’s all right , they ’ll still be able to have kids , is really hurtful to those who already know they ca n’t , and infuriating to those of us who do n’t want them . Endo is physically and emotionally painful , please respect and mind to the people who have it rather than prioritize our baby - making abilities . "
— gemface
“My pain tolerance is really high, so when I say I’m in daily pain and it’s affecting my entire life I’m being serious.”
" I do n’t want to have to take seven tablet in the dawn just to be able-bodied to get dressed . I desire to be a good mum and wife , I need to forge , I do n’t want endometriosis to be the only affair I blab out about , but it has such an impingement on my life story I ca n’t think of much else . "
— b4b8566c7c
“Stop telling me you know someone who was ‘cured’.”
" I have to subsist in a consistence that is try on to destroy me . I will have daylight where we are moody , scratchy and necessitate to be alone , this is not a reflection on you . Some days I ’m just devastate by this condtion .
Stop with the unsolicited medical advice , we make out a lot of the time you imply well but trust me , I ’ve try it or research it . It ’s also not my business to educate you on the condition 🎗 💕 "
— natttynoo
“I wish people understood how draining it is on your overall physical and emotional health.”
" About 50 % of my day are spent with an overall dull pain all over my venter and sense like I ’m add up down with a stomach bug because I have diminished stain of endometrial tissue paper spread over my bowel . People call up it ’s ' just bad cramps ' but do n’t see how severely endo can impact your general well - being on a daily basis . "
— ampsincl96
“Being young does not mean you can’t have endometriosis or ‘don’t have it bad.'”
" I had a five - hour surgery to remove my adenomyosis and the MD said that I had a display case of endo that he commonly only sees in people twice my age , with endo get over every reed organ in my pelvis . I ’m 24 . It also often goes bridge player in hand with pelvic storey dysfunction , which can cause bowel and vesica problems . Regular OBGYNs are not always trained to dole out with the complexity of this disease , so it ’s not easy to get the help that really HELPS . We need support and savvy more than anything . This is a continuing disease that causes chronic pain and chronic fatigue at the least . "
— drmcsnufflepants
“I wish endometriosis and all the symptoms that go along with it were legitimised as a reason to stay home sick from work.”
" There ’s nothing worse than the judgy looks I get from co - workers when I ’m really honest about why I have to stay put home , as if I ’m just being spectacular . I feel like if endometriosis was a aesculapian term men also experience , it would n’t be dismissed and there would be a cure by now . "
— frankie2059
" If humans were affected , I feel like there would most definitely be a cure which would be very inexpensive . This is what makes me so angry . Endometriosis has been around for centuries and we have made very little advancement , whereas male baldness is getting good treatments every year . "
— hogwartsschool4
“In my case, it makes it very hard to be sexually active.”
" just being sex can cause horrible cramping pain in the neck , and in reality orgasming can make the cramps so much bad . It ’s terrible . "
— aidensmith
“The pain is not normal. Don’t let your doctor convince you it is.”
" Be disposed to urge for yourself : push for diagnosing and treatment . You will in all probability have to do this many time until you get it . The only reason I know what endo was and how it was impact my body was that I researched it – I was told I had a stipulation , and then essentially left to it . There are support mathematical group and assembly with people who have been through it and who can help ( but keep off those that scaremonger ! )
And do n’t blank out to be tolerant to yourself . Practice ego - precaution and if you need sentence out , take it . "
— lliheltrut
“It’s a very isolating and lonely condition.”
" It ’s difficult to fully understand what it ’s like to know in constant painfulness unless you experience it , which can be frustrating for your loved ones . Sometimes it even pushes them aside , or they ’ll get thwarted with you for always being in pain . Also , it can finger like you ’re trapped inside a dead body that wo n’t allow you to reach your full potential . There are days when you mentally want to do thing , but your body just ca n’t handle it . It ’s like being at war with yourself . All of this is compound by the fact that there is no effective discussion other than operating room ( and even that is n’t a guarantee ) , let alone a cure . "
— deannab419819b17
