I hope this explains a little how it feels to have endo and what you can do to help.
I'm hoping that if I write down what it can feel like to have endo and how my family and friends have coped then it may helped others.
I would like to stress at this point that endo does not make all women feel this way and the amount of pain they experience varies greatly - some don't get any at all. I can't speak for everyone with endo as it affects everyone in diffrent ways and there isn't any one feeling which is felt by all... but I want to explain how endo can make women feel.
Endo affects women both mentally and physically. It can be tiring and draining and hard to talk about (especially for teenagers, I think). Women can be more hormonal because of it or being on drugs to try and supress the endo. Or they can be facing the thought of surgery or have lots of worries to do with the affects of endo. It is also hard because it feels as if you have just been in pain or know you are going to be soon and it can make you unreliable, both for employment and for arrangements with friends. It's hard not to feel like you are always letting someone down and it is a huge pressure on your self esteem. It really takes courage to cope with this disease. And I believe it makes us all stronger people in the end. But it can be hard to keep that in mind and easy to feel like you are "sinking under".
Endo pains can be fairly unpredictable. I think most would say they felt worst during or around the time of their period, but this isn't the only time pain can be experinced. As well as pain it can cause sickness and faintness. Sometimes I have to ask my family to help me by making food so that I can take pain killers or running a bath for me to just hop straight into. They arn't big things, but believe me they help. I also deeply apprechiate my family knowing when to just ignore the things I say... I sometimes come down stairs in the morning and say to my mum "I'm just warning you, everything is annoying me today". I hope that helps her too, as then she knows not to take things personally!!!
I asked a friend how me having endo affected them. The worst they were affected was when I had surgery.
Here is what he said:
"Well for a start I didn't understand it - I mean I understood it messed your head up so you couldn't explain. So I didn't know what you were going through or anything until later, some of it until I read your website. And when you had your surgery I hated it because I didn't understand how the cyst fitted in anyway and I have a thing with hospitals. Mostly I just didn't know what to say or do and was a completly useless friend because of it. I would have visited you if I hadn't been in Scotland at the time, but I would have probably been rediculous and scared and just sit around not knowing what to do,
I think if I'd had a website to look at several years ago it would have helped me to understand."
Looking back I wish I had tried to communicate better with my friends. I had to make the effort with my family because I lived with them and they saw all the ups and downs. My Mum and I sometimes wrote eachother notes or e-mails when it was hard to talk. But I feel I became quite distant with a lot of my friends because they didn't understand what I was going through, and I made little effort to help them realise.
I also wrote things down for my head of year at school because I got very depressed when my cyst started up. Writing down things like how I felt and how I wasn't coping at school because of it helped me because my head of year would remind my teachers for me that I was going through a rough time as I found it hard to do it myself.
I can't always place why I feel how I feel. Sometimes I want to just sit and cry without a reason. Sometimes I feel irritated by everything and anything... my skin feels like its crawling with ants and my blood feels like its bubbling ready to explode and I just shout at everyone! Sometimes I end up hating myself because I can't control what comes out of my mouth.
I think these feelings are also pretty commen for any teenager, but prehaps they are worse for those who are suffering from endo.
Soph explains how she felt when she hadn't yet been diagnosed with endo but was suffering from her symtoms: "I actually think the doctors didn't know what to do for me. I was very depressed during this time and I felt I was on my own. Family and friends were sympathetic, but I still felt this way, they couldn't take my pain away." (read soph's story)
I think family and friends must feel a bit hopeless when they realise they can't wave a magic wand to make the pain go away. But still they can do little things like going to the doctors to give moral support, helping through hard times like if the person in question is having surgery, and helping them see the world isn't crashing to an end. I always find it comforting knowing things are happening as normal around me even if I am feeling too bad to be doing normal things myself. I don't like it when I'm treated like an invalid, I just want things to go on as usual!
One of the most important things, I think, is to make sure that there is enough support. Family and friends are needed to keep you grounded and to generally take your mind off things a lot of the time. Sometimes when I am feeling particularly low I can't make distions for myself and feel like I have no energy. When there is someone around to keep me motivated it helps and great deal.
I also find it a great help that my Mum takes me to my nearest endo support group. She came in with me the first time (as I'm a bit shy and wanted her support) and now I find it helps to meet other people face to face who are going or have been through similar experinces as myself. I don't think I'd have had the courage to seek out this support network if it hadn't been for my Mum. I think she is more help than she will ever realise.
I know it may seem like there isn't a lot you can do, but it can mean the world to someone in pain or suffering emotionally just to have a hand to hold through the hard times.