Education, education, education . I am gobsmacked š¶ and feel that as a group and organisation we have each otherās backs. I am left reeling by what might be, if it were less serious, comedic. Common problemās on our feeds is the lack of awareness and straight up education of ourselves, those around us , schools, workplace , medics either GPās or hospitals, and I could go on. A really frequent area for despair is that women without endo from Mumās to friends donāt know, canāt empathise, donāt consider endo and all its widespread effects. Itās frankly a disaster and only adds years to getting a diagnosis etc . Like the menopause info and care the silence is deafening. And surely, but surely itās time to put a full stop to this utter lunacy.
Why am I getting so fired up though ? A friend who has a 10yr old daughter who is being sent to a puberty period workshop associated with her school . So far so good. Mum goes too. Mum like myself has had nothing but a tough tough time with her cycle and itās a subject of conversation and frustrations in dealing with the usual plethora of blank faces and incorrect info or dismissal. Mum has been directed for an āonly positive period teenage experience ā . Which sheās stuck with. She doesnāt have. They are only going to be discussing āpositivesā.
I understand , get the desire not to induce a climate of an anxiety or unnecessary fear. Totally. My beef is women here are just colluding with the story of the perfect female experience here from the outset without any space for a conversation empowering these girls to have a conversation and begin to navigate when things arenāt okay. We are allowing the fairy tale to be perpetuated and thatās not okay in my book. The silence is a huge part of the problem. Knowing when things perhaps arenāt like the other 80% of womenās experience and going āthis is a thing and this is what you need to do ā IS in my book a really important, powerful thing to share with the upcoming youngsters. Demystifying it with us from the start is a whole big bunch of the fight over and done with.
It left me so sad š that still now after all the struggles for womenās welfare and rights has being going on for soooo long that these girls are being told happy ever after tales covered in glitter as a way to map their future life. Worse still itās by women denying a whole aspect of this natural process for some women is a large part of the problem. Somehow this needs to shift from the start up.
Rant over but surely early education is the force for change ????
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BloomingMarvellous
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So agree, thatās socking they arenāt empowering girls with the truth. There is an amazing opportunity for real truthful education. I hope your friend can be strong to enforce a change with their approach.
Positive thoughts only happen if you have all the truth. Please tell your friend that thoughts are with her and I hope she can get this class to not put a āspinā on periods and whatās normal and what isnāt.
Hi sorry š I just donāt want anyone to go through what I did. I was told by a GP when 18/19 to have a baby, never went back, put up with bad periods/pain etc and that allowed Endo to spread. I was diagnosed in 2020 at 51 with a lap after things got really bad. They think there is nerve damage, but Iām also trying to establish if there are still adhesions around the small bowel.
Thereās so much they need to learn, what classes as a heavy period? Gynae told me going through two/three pads a day is heavy. I think GPās should ask any girl/women how their periods are.
Carry on Moon_Maiden ! Our stories are similar, the inappropriate treatment suggestions and dismissals likewise. It took 44yrs for my diagnosis and to learn I wasnāt fruit loop, lazy, or had an overactive imagination ( to quote one consultant after bleeding out so much was hospitalised for weeks after an awful late miscarriage and vomiting so much over 12 weeks had gone from 91/2 stones to 6 1/2 he came out with āone day youāll find this is all in your head ā) . We canāt rewrite our experience but we can enable others so this madness stops. In my book the Soap Boxes need to come out all over the place. ššš
My GP would be insane to suggest itās in my head again š¤£š¤£ he knows Iād knock that on the head, but neither will he give a diagnosis now. They were inadvertently told in a Gynae letter about the complaint I made to the hospital and our meeting. I got the letter taken down but the damage was done. My medical record is horrendous now as a Iāve not let anything lie and keep on fighting, just in the hope they donāt do it to someone else.
How a consultant could say that to you was utter disgrace, it would be impossible to make it up. So sorry you spent so long battling. Thatās a lot of weight to lose, have you put it back on?
I lost 30kg in the end 2019 beginning of 2020, no one can still tell me why or why I canāt eat much. Gastro are just as useless. š¤¦āāļø
It would make headlines if groups went to A&E at the same time over the country. Can you imagine the stir women in pain would cause š that would get Gynae out the woodwork! šš¤£
Ha , sadly it played havoc with my weight regulation which for the first time ever went over and itās been an issue since on and off. I know itās the change in mobility and hormone balance so it needs a firm hand. Sigh. Thank you for reaching out - Each of us has a story hard to stomach and in choosing to speak out I hope it becomes a light instead carried forward to say it can be different. At least that way a positive comes out of it and it makes the situation more bearable.
Totally agree. I think half my issue is that I didn't KNOW some stuff just wasn't right, so it took me 16 years to get diagnosed. I remember sitting in consultants office when she was going through endo symptoms and being like oh so this is not what everyone goes through?!?
Our first experience of period talk was 11 years old, primary 6. I'd started in primary 5 so it was a bit late. I still remember thinking back as a 14 year old 'will my blood clots ever stop and look like the wee jar of blood in primary 6?'
The worst lesson we got was in high school on period etiquette. We were no longer allowed out of class to change flooded pads. So I very quickly had to stop going to school. Sitting on clots in your private parts in class is very distracting and I wanted to scream.
Telling girls how to pretend it's all perfect? I can't actually see that plan working. I hope there's some mouthy girls in there who take the conversation on a real level. You can't blame the mum for thatšI hope I haven't offended anyone. But there's teaching facts without positive or negative, and then there's telling girls to like us 15 years ago to suck it up and shut up and disappear. But pretending it's all OK is isn't going to work either.
I completely agree. The statistics is 1 in 10 thus the probability is in every class there will be already at least 1 potential endo case. In school I do not remember being taught about what is normal, what signs may be abnormal etc. I also remember girls being taught about menstruation seperate from boys!
Pain was normalised by those around thus period pain has always been take paracetomol, ibuprofen and get on with it. Pray the worst few days of pain start on a weekend. At school I'd change pads so often I wouldn't bleed through but again what is normal when you've just started menstruation and noone talks. My mum said she never suffered at all with bad periods.
Then after seeing a gp as I got a bit older just told for heavy periods take the pill etc or what painkillers may help or reduce bleeding.
Current day stage 4 and adenomyosis needing colorectal, urogenital surgery and considering a hysterectomy. Pelvic nerve damage still under investigation. The teenage me could never have known the secret damage going on in my body and what I had was abnormal. The adult me has had concerns but again normalised and dismissed. At most I had an ultrasound after colposcopy subsequent to an abnormal smear test. Told not cancer and thought great just get on with life. Until the pain got so bad no painkiller worked I paid for private diagnostic laporoscopy.
I understand positive stories not to scare these young women but as you have said without education there is no empowerment. And only being taught the normal can cause feelings that maybe it is "just them" who has issues which as we know is incredibly isolating. Without education there are more of us without early diagnosis with hidden damage being done to our bodies. And this story resonates with us all. We are endo warriors not from choice.
The way forward as you have said is honesty and education. My mum works in a secondary school but I've not really thought of it until your post about asking what is being taught now and what support the school may offer to girls who may be suffering. I will certainly have this conversation with her. They also have a school medical room ( not nurse led) and I am unsure what occurs when girls go in with period pain- possibly a good opportunity again to sign post to gp or discuss with parents etc.
I wonder if any teachers on here have any comment or insight on what the curriculum actually has regarding this?
Sabrina, your path says it all. The stats maybe higher than that as well. Talking about it early is such a powerful tool and it sounds really positive to start having those conversations in a school where you can raise it. For many of us it is too late to unwind the medical and social effects on our lives but not for the generations coming.
Yes this is it. Hopefully one day through education , our battles / conversations that the new generations won't have to face this same fate. My cousin is also a teacher at a primary level I'm going to ask her as well. She actually has symptoms of endometresiosis under investigation (only realised when I said what had happened to me) x
Let us know how it goes. It would be useful to have some age appropriate information to be able to at the very least be able to use and sign post resources.
Sure will do. Will start with my mum when I see her as she is assistant to the head of year 8 thus girls around average puberty age. Will try and start by asking if she is aware what is taught, by who etc and regarding the medical room etc. Think the main criteria as per everything school I'd what the curriculem actually permits as core x
In 2020 menstruation became compulsory part of curriculum. Implies have to discuss normal versus abnormal. But will ask my mum on the school is endo specifically mentioned etc x
Yes this is what I am curious of as well. Seems like very positive steps compared to when I was in school but will be interesting to see what she says happens at the school she is in x
I will say as a biology teacher in my 30s things are very different to when I was at school. We teach about periods in PSHRE (which is compulsory) as well as in science. Adults delivering this content have access to CPD. All of our year offices have pads, mooncups, period underwear, spare normal underwear and heatpads that the kids can access when they need them.
Glad to hear things are on the change. Is there specific signposting for when things arenāt the āaverageā experience or discussion about that at all ?
Yes, there is. I personally know of two children who have been diagnosed with PCOS, and one who has been given a toilet pass/ support in school while undergoing tests to find the cause of her very heavy periods. All three talked to their parents/ went to the doctor after lessons in school taught them things weren't normal.
Im definitely not saying its perfect, or that every school and setting gets things right all the time. But in my experience after 11 years working in education this is something that is getting better.
20 years ago the New Zealand Endo charity started going into schools and teaching the children (boys and girls) about periods, what is normal and what is not. The Endometriosis SHE Trust tried to do the same thing and managed to get a pilot scheme going but only in a private school, no room in the national curriculum for elements that can really help. Now the diagnosis time in NZ is greatly reduced. So yes education is the key. Any tradesman entering our house gets that education, I remember one carpet fitter who came out with āho thatās probably what my first wife suffered withā, my thoughts were was Endo the cause of the marriage break up, probably.
Had a brief look at the NZ programme and how itās been given backing by the World Endo organisation as being the best thing since sliced bread. Sounds excellent but I canāt get any details. It seems itās being adopted further afield too which is great .
I wonder why there isnāt any discussion about periods and whether things seem normal at pill checks/ smears. The GP surgery insists on a blood pressure check every year when youāre on the pill. I am left wondering why canāt there be a quick questionnaire done at the apt, a quick way to check if the periods may be abnormal. Like how often do you change pads, how regular are the periods, any pain, back pain etc then if you score high a referral to gynae.
Fantastic change and proof is in the outcome. Would love to know what those programmes look like . No point reinventing the wheel if something is so effective.
Totally agree. I have felt so alone and scared about the range of symptoms I've had since my periods started, all the time gaslighting myself and then when I did first go to a GP after years of excruciating pain, brain fog, constant spotting, emotional/hormonal symptoms, even a twitchy eye, I was dismissed and only diagnosed 5 years after that, aged 37. All along I thought I was on my own and would be labelled crazy if I persisted trying to get help. I remember being at school and chatting with a teacher about my period pains being all down my legs and excruciating. Just imagine if a teacher had said that level of pain is not normal and could indicate endometriosis. I would have been able to save those years of gaslighting myself, even if i hadn't had much support. I agree telling the truth to kids is the important thing. You can say that it's more likely they won't have that experience, say it's relatively uncommon or whatever to reassure them but at least give them the information so if they are one of the people who get endo or other illness they know. Even just telling them about one of the pain scales would be helpful so they know if their level of pain is normal or not. I only realised this last year, that literally almost passing out with pain that not even codeine touches is not normal and is actually considered a medical emergency š xx
Experiences like yours are enough to justify why being quiet is disservice to a personās life. Ignorance should not rob us of being affirmed, getting the best help, being able to make career and family choices that nourish and support us. Life is brief, too brief to spend it in pain.
yes! I get not wanting to make young girls anxious and worried about whatās going to happen. But it could easily be done in a way of āif you get any of these symptoms then get it checked outā or something along those lines.
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tingly numb leg on period. normal or endometriosis? 
An aspect of the importance of a diagnosis I feel is overlooked 
Anxiousness around period 
Struggling with doctors 
Us Women need Support with providing Sanitary on an Incontinent Level for the Excessive Bleeding! 
