Post endometriosis woes. I feel like I've... - Endometriosis UK

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Post endometriosis woes. I feel like I've lost the years that should have been the best.

elzb profile image
elzb
6 Replies

I feel like nobody I come across will ever understand what Endometriosis has done to me mentally. I'm 19 and had my first laparoscopy in December after nearly 4 years of feeling unwell. I was put on to Mycrogynon 30 when I was 15 and it helped a lot however I still had a constant dull pain in my abdomen. I became exhausted and my grades started to fall. I went from being 14 and predicted to leave school as an A* student to leaving with A's, B's and one C at GCSE level. I was heartbroken and disappointed, everyone was saying that they weren't bad grades and that if I'd missed less school and revised a little harder I would have done better. No body understood that I physically couldn't have done that, mentally I was desperate to but after a day at school I couldn't sit up and look at books. I was too tired and felt too low. I missed at least a day a week from school throughout my last year.

I managed to obtain a place at my chosen college who had assured me that they would help and stand by me to allow me to achieve my predicted ALevel grades of ABB. My attendance dropped to around 50%, my friends didn't notice, and when they did they didn't realise how bad it was. I couldn't wake up in the mornings, and when I did I could so easily fall back to sleep between getting up and leaving for the bus.

I had never been a 'bad' student. I'd always been very very academic and thrived under exam pressure, I was seen as a 'gifted and talented' student, but everybody seemed to ignore that from my records and blame me for being a lazy teenager. I became depressed throughout this time yet was too scared to tell anyone. Every time I have tried to confide in my mother she totally misses the point and we end up in an argument, I'm too ashamed to go to my doctor or even tell friends, partially because I feel I am being ungrateful, there are people with far worse physical symptoms from endometriosis but it was mentally killing me.

I finished my Alevels with one single E grade. I was devastated, I wanted to go to uni, I'd always wanted to and I've always had the mental drive and capacity to do it, my body just wouldn't allow me to get to college to absorb the information I needed, and even when I was there I felt too ill to concentrate.

I got a job in a a coffee shop working awful hours, I missed a lot of time until I had my laparoscopy - it then took me a month to recover enough to be able to return to work, and even then I was on reduced hours (probably more due to the nature of the job: fast paced, always on my feet and super early starts). Eventually, 3 months after the op I realised I was no longer in constant pain, I had energy to do things, I could get up at 4am to go to work on 5 hours sleep, whereas I used to struggle getting up at 10am after 10 or 11 hours sleep. I felt well for the first time in almost 4 years.

However now the excitement and novelty of feeling well has worn off, I've realised I'm in a really bad position, and one that i never ever dreamed I would be in. My friends are finishing their first year of university and that's where I thought I would be right now. Instead I am in bed in my onesie, sobbing. With my curtains closed and door tightly shut. I have already finished work for the day after waking up yet again at 4am. I have no grades, nothing to show for the last three years of my life. I hate my job, I hate my body and although I know I have the ability to fix it all, I almost feel that I don't want to, I've always hated it when things don't go to plan the first time around. I won't be able to get into university without first retaking my a levels, but I don't want to go back to college, especially now as I am too old to get it free. Unless I was magically able to get into university for a start this september I can't see myself ever wanting to go, I feel (arrogant as this sounds) too mature, like I've dealt with too much to have to live with people years younger than me. I have learnt that there are more important things to life than drinking and partying, mostly because I have never been well enough to do either of those things.

I'm feeling really, really down at the moment, I feel like I will never be able to escape where I am right now, both physically and mentally. I need a new job or I need to study, but who wants to take on a 19 year old with no qualifications? It just frustrates me so so much that everyone thought I was milking it and would be fine come exams days and results day. Yet now I'm sitting here - yes i proved them all wrong but I feel like the rest of my life has been ruined by this and that I will now never be able to forget my time suffering from endometriosis, because even though it's not inside my belly anymore, it's still inside my mind and it's still making me miserable.

I'm looking for someone who understands how I'm feeling that can give me some advice on what to do and how to move forward from this place because right now I feel like this is where I'm going to stay for the rest of my life, and that thought makes me want to stop living, because it seems there is no point to it.

I really really want to progress in life and be in a reasonably paid job that I gain some level of enjoment from - or at least feel accomplished and porud of myself- even if it has to be 'proud considering the circumstances' so that I can truly feel I have completely overcome my endometriosis... at least until next time.

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elzb profile image
elzb
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6 Replies
Bekie84 profile image
Bekie84

I really feel for you this condition really does take over your life I don't understand how it felt at school as I got it later in life I am now 30 and have struggled for years and finally got diagnosed last year after they removed a lump of it and thought it was cancer I have 3 children so really struggle with it all but listen you are young still and you can pull your life back it helps a lot when you have people to support you it's hard though as unless you have the condition you can't understand but we are all here for you on here and when you need a moan about what this condition has took over in your life we are here to pick you up from it you have overcome it your a strong person and you need to realise that to overcome this part of it you can do it here anytime to chat take care x

MISS_TLW profile image
MISS_TLW

Elzb, bless you it sounds like you really have had a rubbish time.

It is good to speak to people to get things off your chest so well done you for writing this post.

You are 19, wow you have the whole of your life ahead of you don't you worry about that.

You can have all the things you want in life, people change careers all the time and try new things. It's not to late to study or do an apprenticeship. So maybe contact a local college in your area, job centre, recruitment agency.... They should help and guide you on the path you want to go on.

Stop beating yourself up for having enfometriosis, it is not your fault so please don't hate your body.

You are entitled to have low days, everybody is. Go and speak to your doctor and explain these feelings and they should help you also.

Do it for yourself :-) keep us updated xx

Bryonybear18 profile image
Bryonybear18

Hey,

Im 22 and recently diagnosed, I suffered with school and college and never bothered with uni.

Considering how far you've come really dont be negative towards yourself! Think of all the people who literally just cant be bothered to do anything, they quit school/college/uni and opt for JSA and all other benefits they can blag because there too lazy to do anything! I work as an assistant manager in a hotel (neither school or college was to get this job it was just by luck and being willing that I got it) were currently hiring staff and you sound like someone who we would employ with out any trial etc, you sound like your willing to learn, flexible, capable and determined. This is what employers want, not some sheet of paper listing times they've been in class etc. Feel free to private message me for a chat, you've come so far dealing with your endo and enduring college try to focus on what you have achieved not what you haven't. xxxxxx

Jdgirl030 profile image
Jdgirl030

I think you need some support. I can associate with your pain because your story echoes many of my own experiences with endo. It sounds like you might have depression and rightly so. You have been through A LOT! Depression can create a negative mental filter. We can only focus on all the awful things we have been through and often begin to wrongfully predict that life will always be this way. This leads us to retreat and feel unmotivated to start living again. I think you should see your GP. Don't accept antidepressants as I don't believe in medicalising depression which is completely understandable and normal based on your circumstances. Instead, ask for a referral to a counsellor or local Improving Access to Psychological Therapies practitioner. Hopefully you can then get some professional support to move forward. 19 is still young (although I know it doesn't feel that way right now). When you are 29 however you will look back and wish you had done something at 19. Perhaps a counsellor will support you to begin to see this.

Best wishes x

Shellbell84 profile image
Shellbell84

I agree with all the comments above, but I get that you're probably not in the place right now to be thinking of your future and actively seeking new prospects. U sound exactly like me...10 years ago. Fortunately I have those ten years under my belt and realise that everything has happened for a reason. I've had many jobs, some good, some horrendous! None of them pushing me to my full academic potential, but all have mentally got me to where I am to day. It's been 6yrs since my last bout of depression (I tried several times to take my own life) and I can't say it will never come back, especially dealing with endo, but I'm happy and have learned to deal with it. You will get there, I promise. Do seek help though. I couldn't have done it alone. And use us! It's good to get it all out and see you're not alone. I wish u all the best and here if u need to talk xx

nayjay profile image
nayjay

Hi Hun, sounds like you've really been through it lately- sometimes things don't go to plan and illness takes over, but all is not lost just yet! The fact you get up at stupid o clock is something you should be proud of, you hate it but you do it. You are an intelligent person and employers/colleges will see that! It's not too late to go back to college if you choose to? It might take you a couple of extra years but you can get where you want to be! I know it's really hard when you're in pain and feeling low and demoralised but hang in there. Might it be worth trying to get some help? There's lots of youth organisations that could support you with education/employment/emotional support-eg connections or similar in your area! Or maybe even your gp? You have nothing to be ashamed of...I'm fact I think you've done great, endo is a challenge, it really is. Just keep plodding! And ..my brother had no qualifications at all..yet 5 years in has a great job and future, it's more about attitude, willingness to learn and that kind of thing.

I really do understand how tough it is, emotionally and physically... Sounds like time to really focus on feeling better, look at agencies that can help, maybe see if gynae can review you? You need to let off some steam. If the last few years have been crappy... Write them off, they will shape you as a person and it will give you an extra level of strength lots don't have. You will be ok! Message me anytime if you want to chat

Sending lots of hugs, it's time to take care of you! Education/careers will work out in time

Xxxxx

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