Just feeling a little disheartened. Since having my first laparoscopy on 4th October and being diagnosed with endometriosis I have felt quite alone. I find that women that I speak to in day to day life do not understand what I have been through, am still going through and what I might go through in the future, living with the condition. I am 30 years old and am doing my Diploma in Therapeutic Counselling whilst working 3 full days a week alongside college and placement. I had to have a few sessions off college because I was so exhausted and in pain from endo symptoms, which haven’t gotten better since having my surgery. I went back into college for today’s session and explained to my peers, who are mostly middle aged women, why I hadn’t been in. I said “My endometriosis symptoms were bad and I was in a lot of pain” and one woman’s response was “Still?”. She had a look on her face that implied that I was lying and had just been skiving off or something. I felt like screaming at her that she had no idea and that it probably won’t get much better, it will probably get progressively worse and it could end up in my having a hysterectomy. And I might struggling with conceiving a child. And the pain and symptoms can be so bad that they keep some women from having a job and going out into the world. I was so cross that she just expected it to be a short term illness and that I should be completely fine by now. For a trainee counsellor I felt that her lack of empathy and understanding was appalling. Does anyone else experience this lack of understanding? X
Written by
EndoEffect
To view profiles and participate in discussions please or .
Yes with my family, so I do completely get you with how annoying and upsetting it is.
I just wish people would either accept it, or ask but don't judge me. It's so frustrating when they believe it should just all be okay and that it's only superficial like it can't possibly be that bad or affect you so much.
I have my family whom just say "well it should be better now so just keep trying or try harder, and stress less, take supplements, then things will just happen". Like it's something we can control, it's much deeper than that emotionally like a part of you is out of your control, it will do what it wants and no amount of trying or coping is going to make it suddenly go away or get better, and no one gets it. I mean we're not even trying so I don't get why people say that, I'm just explaining to family how it affects me and how my cycles / periods aren't nice, how I get emotional, how we're trying to help me cope and enjoy life, so that means recovery, time off / time to myself etc.
She sounds so ignorant and uneducated, I feel that women don’t offer sympathy as they are not going through this condition , don’t know how it effects us physically and mentally either. I don’t tell anyone as I don’t think it’s their business and they dismiss it as a bad period! If only .....
I was treated bad by an employer who were all women and had a lack of understanding, in the end I had no choice to take my employer to court for disability discrimination.
A little note for the future, if you feel you are being treated unfairly always note everything down, you might need it in the future.
Employers don’t want females like us with problems, it’s not like we asked to live in daily pain etc .
I haven't had a diagnosis yet but people are so uneducated that they think it just like normal period pains or think it something that will just go away .
My mum was one of these people that just treated me like I was being a drama queen because she didn't understand and she has never had any pain with her period at all.and she had never heard of endometriosis.
The more we will speak about these thing and others speak about it hopefully the more the world we will get a better understanding .
My favourite is when someone says oh they had that removed and they are fine now, turns out she had something different xx be strong and congrats on still trying for your dream even though you have to deal with this disease and stupid horrible people, I don’t say uneducated because you can go and look it up! Big hugs, keep fighting xx
I'd like to see them have a week of our pain, then roll your eyes at us, I'd have just said if you don't understand LOOK IT UP small minded people just get on my nerves hope your feeling a little better today 😘 xx
A colleague recently told me life would be easier if I smiled more. I was on day 15 of what turned out to be a 30 day agonizing period and was at the end of my ability to deal with 24/7 pain plus work plus life. It’s annoying that this condition doesn’t ever heal for most of us, and it is hard for others (esp men) to understand. You are not alone. I worry daily I’ll have to quit work as I can’t deal with the pain and not lash out at people/fall asleep standing up.
I would like to ask what you are looking for when you mention your endometriosis to family, friends, colleagues ? Please tell me, is it sympathy, practical suggestions (I am guessing the latter would not be helpful from non sufferers anyway). Are you just looking for a hug and a sympathetic ear? I need to know to help someone close to me.
With me, it may be different for others, but I mention it to close friends and family as more of an acceptance and understanding; I have this, it causes these problems and that's why I can't do certain things / feel a certain way. I wouldn't expect hugs or sympathy unless they've been through something similar; I don't expect stuff from anyone therefore there's no disappointment / upset. That's taken me a few years to realise and I'm still working on it.
However I feel we shouldn't need to explain, it should be natural, not like it's being forced or pulled out of you.
In the case of work, my new place, I haven't mentioned it to my manager but I have mentioned it to HR so they have it on record and they do seem more understanding. With colleagues I've taken the approach of "I have a condition that can sometimes cause problems" and let them ask more if they want to.
Hi, i dont think anyone will really understand until they go through it themselves. Ignore anyone who reacts that way, they're not worth the added stress. Do you have any upcoming appointments for your endo? Do you have injections to stop periods? I found this helped me a lot. Stay strong x x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lack of support
Gaslighting and downplay of symptoms?
Referral Help Please
In need of support and understanding 
Do we have a choice? If we don’t, why don’t we? It’s our bodies… 
