Am I the only one that finds endometriosis embarrassing :/

Hello ladies :)

I don't know if I'm the only one. It sounds odd but when I was diagnosed with endometriosis I couldn't talk to anyone about it. I'm 22 and telling my father was just cringe seeing as though it all stared mainly with pain when my fiancé and I were doing things that my father would not want to know abit lol

I find it difficult to even say to anyone except my mum fiancé and best friend how much pain I'm in. When I am in pain or have a pain and it's noticeable to anyone they ask and I end up saying "oh I've just got a bad belly"... How childish. I think endometriosis effects such a private area of our bodies that the thought of getting into an awkward convosation with just anybody and having to explain a condition that effects mainly our reproductive organs it's just not worth the hassle of try to make them understand.

* am I just rambling or does this make sense to anyone :/ *

Maybe this is why there is such little awareness...? I mean if I had another condition such as I don't know really because I suppose explaining to people anything that's not "normal" is embarrassing?

Anyway my point is I wish I had the guts to just say! seeing as though people who hardly know me can be rude enough to say something like "your too young to have hot flushes" ... *ahem try having these zoladex implants every month they are not natural*

Hmm so what do you think girls it's got me thinking maybe that's why I like being on here everybody understands and isn't embarrassed.


16 Replies

  • Absolutely - dreadfully embarrassed when i was in my younger years - flooding issues, stained clothes, not enough pocket money to buy sanitary towels - so i spent my teens chopping them in half to get double the use out of them - used loads of toilet paper rolled up too, when I'd run out. my periods were 1week on 1 week off from 13 to 21.

    When I finally got a job at 18 - I was in a much better position - could afford to look after myself a lot more.

    Relationships - a whole other nightmare.

    I was a very good swimmer in childhood - that went completely when I was hit with periods and endo. Still have my medals and it is but a distant past glory.

    Life changed so much, had to forgo so many social events, lost my job due to the pain and fatigue, bought a house managed to keep it for 14 years then lost that when I couldn't work and pay the mortgage. Ended up living with my parents again, working for a pittance.

    couldn't have children - there's another issue - the embarrassment of having to explain why I was childless - not in a relationship etc etc. It never ended.

    I will say this - and it does get easier as anyone who has had children will testify...the more medical tests and examinations you undertake over the years including down below - the more experiences you have where you are left with no dignity intact, the easier it becomes to discuss pee, poo, periods, pains, PMT and any other 'women's troubles'.

    It's just a confidence that comes with time and experience and also realising that each and every soul on the planet farts, picks their nose and has spots and problems with bowel or bladder from time to time. They don't all shout about it all the time.

    There is also to a greater degree that you end up resigning yourself to not stressing yourself out about things that do go wrong that you have no control over - there is no point wasting emotional energy on worrying.

    Embarrassment is nothing but an anxious emotional response to things you are not comfy with.

    As with so many emotions as time passes you do cope with them better, you can control them better, whether it's grief, love, hate, fear, humour etc experiences and time makes you wiser and has the benefit of giving you a much better means of coping with anything emotional that in younger days made you anxious, beetroot red with shame or embarrassment.

    As a prime example - bad dreams. They absolutely terrify young children, but get one as an adult (which does happen) you wake up and you understand much better that it was 'just a dream' and scary as it was at the time you don't let it rule your every waking moment, whereas with young children it terrifies them to even consider going to sleep the next night for fear of a repeat. Not at all the way you would react in adulthood.

    Rest assured we all go through that emotional development process as we grow older.

    I was always so scared to see a GP for any down below problems, as all of us are at first, and I stupidly believed them time and again when they said it was normal and periods would settle down etc.

    Upset bowel movements were very hard to even mention. I did go to the docs on a number of occasions - but with no one putting the clues together pointing squarely at endo.

    But here I am mid 40's and I can talk about just about anything to anyone.

    I don't give a stuff if I embarrass any listeners when I talk about endo or any other 'delicate subjects' - that is their emotional response to deal with not mine. I am not wasting my time worrying how they feel if I mention certain topics. They might just learn something and be a bit more sensitive to the medical issues that others are suffering with next time it crops up as a topic either online or in real life.

    Believe me I have not in the slightest forgotten how embarrassing it was in the younger years. I also think we are much more self absorbed when younger too, much more conscious about what we do and say and how others perceive that, when in truth as you get older you find out that it doesn't matter one jot what others think. Love yourself and live your own life. Let others do the same for themselves.

    If you happen upon 'like minded souls', 'kindred spirits' that you can share things with so much the better at any age.

    It gets so much easier with practice, as all things do. The more you open up and talk about these things the comfier you will find it- the easier it will become and you no longer get an automatic heightened anxious response and feel embarrassed.

    Doesn't matter if the person you are talking too, isn't listening much, or doesn't appreciate what you are saying or they feel squeamish and embarrassed - that really is something they need to address in themselves and learn to cope with better.

    You carry on letting people know you have endo and what that means and how it affects you. You have it for life and you have to live with it and let others around you know how it impacts on your health and how they can accommodate this affecting them too. It is part of you. You are a package with with endo.

    ie too unwell to go out, too tired to stay up late, too sore down below for sex, too spotty from hormones, too forgetful from medications.

    If you can not work full time so have to cope with part time or no work and very little income which means that you cannot do all the things and be as extravagant in life as someone in full time well paid work even if they are your bestest friends.

    As a teen and even in my 20's I wouldn't say boo to a goose. Woe betide any geese getting in my way now.

    I think anger and frustration also build up too. The not being listened to and not being understood for so long does wear you down and instead of feeling embarrassed, that emotion is replaced by confidence and fight instead of shyness and flight.

    It's a fine line between love and hate, it's a fine line between the other extremes of emotion too, you can laugh till you cry and you can cry till you laugh.

    You can run and hide or turn and fight.

    It is, as they say ALL IN YOUR HEAD as to how you react and respond to emotions. Learning to get a better control over how you react is something you can work on now and in the future and believe me the time will come when you will just say "Hang it, this is my life, this is my endo, this is what I have and I will talk about this because it is important for me and for others that I do talk about it. " Be bold, be brave, be brazen and be free of embarrassment.

    It won't happen overnight - we are, each of us, an emotional work in progress - .

  • Thank you so much for sharing all of that. I hope one day I've got the guts I'm sure it will come especially talking to inspiring women like yourself xxx brought to tears right now xxx

  • Oh and I total relate to your line "oh I've just got a bad belly" - that was mine, still is really..

  • It's horribly embarrassing. The majority of women don't seem to understand because they just don't have the amount of pain that we do and think we're making it up.

    It's so private and affects everything about you as a person, body image, fertility, confidence.

    I haven't told many people at all and just say I have bad periods or stomach cramps. Only other women who have gynae problems can understand. It can make you feel alone, glad I've found this website. X

  • I feel my face flush when I tell people I have endometriosis, the next question is always "whats that" - If i'm trying to keep it brief I just say that certain types of cells grow in the wrong place in the body and because the body doesn't have a process to deal with that, it can cause inflammation and pain. I'm deliberately trying to be a little bit open about it because I don't feel like I should feel embarrassed, I haven't done anything wrong and by staying quiet about it feel like I'm not helping to raise awareness. That said, it's no one's business if you're uncomfortable talking about it. (I told one person I was recovering for appendicitis surgery - which was true but only because they took out my appendix because it had endo on it :)

  • wrote about this issue for the paper I work for

  • Well am I relieved I am not the only one. Chaosa you hit the nail on the head when they say "what's that" and then usually the next question is the worst "aww does that mean you can't have children"... And yellowrose you said about the infertility aspect to, I think that's the point where I couldn't feel more embarrassed and upset :'( I know it may not be the case when my fiancé and I start trying but I know it could also which is why our priorities have changed because of endometriosis. At this point in the convocation I really should say mind your own business xxxx

  • i completely understand how embarrassing it can be to talk about endo i was diagnoses at 22 and trying to explain to my mum when i first started getting pains was horrendous, no one what to tell their parent about being intimate with their bf, but i try and make a point to explaining it to as many people as i can if they ask why I’m in pain. I feel it’s the only way to get rid of the embarrassment. The more you talk about it the better. Most people can’t begin to understand what we go thought but it better to try and enlighten people than to feel ashamed of being different and having endo. we should all be proud to talk about it because it shows we are brave and strong women. xxx

  • Since being diagnosed with endometriosis in jan 2013 I tell everyone about the condition. Yes at first it might be embarrassing but I beleive that we need to have more awareness of this disease.

    I'm a teacher and when I was off for 6 weeks following my second lap (which resulted in the removal of an ovary) I returned to work and was posed with th question from my sixth formers - why were you off? I had two options - tell the truth or skirt around the truth. I decided to tell them the truth. I explained about the condition and th symptoms of it - I explained about what I had done and why. The students were amazed that they didn't know about these things and that these conditions needed teaching about in school. At the end of the lesson one of the students came to speak to me about her periods. I told her to visit her GP if she was concerned. It turns out she has cysts on her ovaries - she came to see me to thank me for telling her about what I had been through as she just thought that her heavy periods were 'normal'.

    Since being diagnosed and telling people about my condition I have found out that two women who I work with both suffer from endometriosis - but didn't want to talk about it before - we now regularly meet up to have lunch and discuss things endo related - it's good to have the support. I have also directed them to this site and to the many endosisters on Twitter.

    We need to put the embarrassment aside and tell people about this condition. We need to remove the belief that it's just a 'heavy period' and we need to educate Young girls to talk about their periods and problems associated with them.

    I would like to apologise for the mistakes in the text - I have just re-read it and seen the spelling mistakes and missing letters. I'm writing this on my iPad and for some reason it won't let me go and correct them without deleting everything.

  • This really resonates with me ladies. Now in my mid forties, I am telling anyone who will listen, that I have advanced stage 4 endo, what that entails, consequences for fertility, sexual relations, etc. That wasn't always the case though. even when I was first diagnosed at the age of 37, I kept it to myself and just told people I had 'lady problems' !

    I think as you become older you become more confident and comfortable with yourself. I had a moment recently ( as I started to embark on more surgery) where I thought that if I didn't speak up and started giving people the facts then how would they ever begin to understand what I and thousands of other woman are going through? I finally spelt it out for my Mum (literally: Mum, take a pen and write it down, e n d o.....) A lot of my female friends now know that they have a Pouch Of Douglas (who knew?) So I like to think I'm doing my bit, putting the endo word out there.

    It's always down to the individual if they feel comfortable enough to talk about it, we all deal with these things differently, whatever it takes to cope.

    All the best ladies xx

  • I didn't know I had a pouch of Douglas either until my endo decided to occupy it.

    What's also rather embarrassing is having shooting pains up my bum because of it :/ lol


  • Yes, it can be! While I don't really have a huge problem describing what's going on, my male manager openly invited me to speak to a female manager about it if I needed to - I think that was more for him than it was for me LOL!!!!!

  • yes, i don't have the guts to tell them, i couldn't even tell my family about it, especially my sisters, they're too narrow minded they think i got it from sex and it's a disease, what a crap, thats why everytime i go to my ob have to go alone and when mom ask i only say few words i dont want to get into details, well mom knows i have it but not the details i want to keep it myself or they would slap me in the face again telling me im a dirty woman.

  • Your not the only one. I feel how you feel I struggle so much to talk about. I feel scared aswell because I know someone who has cancer and I get such looks if I talk about my condition it's like what because I don't have cancer or a condition that no one knows about I shouldn't be aloud to talk it!? We shouldn't feel like this but sadly we do.

    I also hate it aswell on Twitter there are a lot of women and girls I follow that have this horrid illness and they all make out they are there to support you i have asked for advice time and time again and never ever got any support or advice back, yet I'm always there to help. I don't think this helps either because if no responds to you then it just makes you think "am I being stupid?" "Is there any point in my asking?" "Am I saying the wrong things". Then awareness isn't being made.

    I can only talk to a few people my dad I'm not close with and sadly doesn't understand he even said to me once "oh your used to it now so" it's like what the hell we go through this everyday and its people like my dad that make us women not want to speak up!

    My mum is amazing we have our moments about it at first she really struggled to understand because she mainly felt helpless, my stepdad doesn't really understand either he's nice about it but deep down I just know he doesn't get it.

    We're all in this together and we have to make our voices heard I've learnt now not to overly care about people's responses sometimes I'll snap because if they take the piss then they need to knocked down a peg.

    Keep strong girl voice it to whoever you feel you can it takes time but I'm getting there!

    If you need a chat Im always here.

    Facebook: Louise Anne Barnard

    Twitter: LouiseBarnard

    Louise xxx

  • I feel the same and I get very embarrassed and upset trying to tell others whats going on. So like you I just say @I have a bad belly' or 'im not feeling well but i'll be ok' and sometimes its really hard because Ive had to be rushed to hospital with pain 2 within the last 2 weeks and it just seems to be getting worse rather than better but I don't want to put my problems on to my flat mates. I don't know what to do. xx

  • I sometimes think it's worse because other women can't empathise. Because they have a deluted version ( ie a "normal" period with a bit of pain) they can't get their head around endo. Also I think because women bleed from their vaginas it also becomes ok if we bleed all the time, even when not our periods. If we were bleeding constantly from any other body hole and in pain all the time, we would be in hospital until they got it sorted. But because its your vagina, oh that's ok then.

    We need to continue to raise the profile of endo so people understand.

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