So I have endometriosis, will be having my lap surgery next week. I am a uni student, 20 years old. My endo is really bad to the point I lost my job and I've been told by my university that I am unfit to study. Endometriosis has really taken a hit on me; physically, emotionally, mentally and now financially. I feel trapped and lost. I am fighting with my GP for a medical report in order to defer my university year but it is not luck.
I wanted to go in the surgery with a clear head but I feel the complete opposite. I feel drained, lost and hopeless. My endo symptoms go on for 3 weeks, which leads to literally 1 week of recovery. My mental health is just gone down the drain no matter how much self care/self-love I do, I literally feel like I've done everything and now there is nothing left to make me feel sane.
I am not sure what to do anymore with anything! In my head, I just feel like I have to be up on my feet as soon as possible since I've got my education on the line and my financial responsibilities. I have been searching day and night for work at home jobs, because I am bed bound for 3 weeks because of my endo. But I literally get rejected left right and centre!
I feel worthless, no job, no education, nothing! All my life plans just have gone. I have been misdiagnosed for 4 years countless of unnecessary meds all for nothing. I am at a point in life where I have no idea on what I am doing.
Thank you for reading my rant, sometimes life gets too much
I am open to any suggestions or advice from anyone.
Written by
leila875
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I'm sorry to hear your endo is so bad at such a young age. But it sounds as though there is a lot more going on, you sound like you feel overwhelmed generally by everything.
I have really extreme endo which wasn't diagnosed until i was nearly 40 by which time it had spread everywhere bowel, diaphragm even lungs. Sadly 4 years is not that long before being diagnosed but here is the good news. You do have a diagnosis this means you can take some control of the situation. Also it has been diagnosed reasonably quickly so you probably don't have too much damage.
Have you had a good MRI or TV ultrasound by a skilled sonographer?
This is the first step once you get this done you can go ahead and get some treatment. Please be very careful about who you choose to do your surgery. I had my first op with a non endo specialist gynae who missed almost all the endo and just burned to the top of it off, this meant i was back in for another op very quickly.
The progesterone only pill can help hugely. I take that and it has completely stopped my periods and all that pain. It doesn't cureendo the endo will still grow but it can make life so much more livable.
If you have surgery with a good surgeon it will also really help, even my bad surgery at the start did really help with my pain for about 3 years. Things can get better, the situation you are in can be improved a lot, the way things feel now is not how it will feel forever.
Can you do most of your uni work from home? I taught at uni for many years and I know my students had online access to libraries, they could get all the research papers online, they could even watch any lectures they missed online. You probably don't need to attend much in person ask your supervisor what help you can get with all this and ask if you can defer things for one year if you feel that with the op it is all too much. You should be able to get a deferral if you talk to your lecturers , you can contact them online and have a zoom call and explain everything. Most lecturers will be supportive , a few of your female lecturers will probably have endo themslves so they will understand.
So take things step by step:
Talk to someone at Uni and ask for a deferel.
Organise a really good scan before you are booked in for a lap
Have the lap and take at least 6 weeks off to get strong.
While you are off uni do all your recommended reading while you are stuck in bed it will give you a huge head start.
Once you have recovered form your lap you can head back to uni with most of your reading done.
Restart your degree, life will be so much better.
YOu have a diagnosis you know what is wrong and you have the power to cahnge your circumstances, just take it one step at a time. XXX
I am really sorry to hear about how endo was for you. I cannot imagine what you have been through.
I've had an ultrasound which shows the endo as well as some cysts. The point of the lap is to scrap and drain as much as they can. In terms of my uni, I've asked to defer a year since it is not online and I just really think I need fix on myself. In terms of recovery as well as mentally. I just really think that I need to put myself first and it is something I've never really done. I think all I've got are just nerves and they are getting to the best of me. Like you said I just have to take it one step at a time.
Honestly thank you so much. This has really calmed down my thoughts ❤️
I'm really glad I could help even a tiny bit. I think being quite ill puts so much strain on you it can end up making everything feel really overwhelming. It's a really good idea to defer for a year if you feel you aren't strong enough. I deferred my masters degree diertation for a few months because there was a lot of upheavel in my family and it. was so much easier going back to it when I felt calm and ready. Once you have the lap done and out the way and you feel physically better you will probably feel much less stressed and overwhelmed. You can do anything just take it one step at a time. xxx
It is hard and those horrendous feelings and pain become foremost and not easy to deal with. Make sure you have decent painkillers, tell GP what you need, politely, rather than ask. Much harder for them to refuse.
You aren’t worthless by any means, you’re intelligent with so much ahead of you, and these are important things to remember and ground yourself with.
The hard thing is advocating for yourself, unfortunately with this we still have to.
The positive is your surgery is soon, allow yourself time to heal after as well.
Send your Uni info from the Endo UK site and that they should be supporting you with your education. This condition is in the top 20 NHS most painful conditions (at least it was a few months back) stand your ground that they’ve hindered when they should support. Same with the workplace, potentially you could have a case. You can claim benefits and your GP should have no issue with fit notes, also good to show Uni.
Whenever you have an appointment try to get someone robe with you. If it’s a phone call on speaker but make sure the doctor knows you gave support.
From the beginning, I've had male doctors that really put off the whole situation. I've been told that it is nothing and that I've been selfish since every woman does through it. Loads more I can say. From hearing all of that obviously does not help, makes you question what really is wrong with you and overall chasing after GPs/Doctors/Consultants becomes tiring.
Advocating for myself is something I do struggle with. It's something easier said than done. All my life I've bottled things emotions and thoughts in terms of the best for others but I never realised until recently that it is not the best for myself.
I've managed to get a couple of fit notes from my GP. I will definitely use them for support and benefits. I never really looked much into Endo UK but 100% will do from now.
In terms of surgery, I am prepped with items like my hospital bag is all packed and ready. I've changed a couple things around my rooms to make my recovery easier. But I honestly don't feel like I'm having surgery, for some reason in my head it is just like a normal hospital appointment. It's not hitting me, I feel like it will hit me once I'm in the ward. In a way, I'm hoping it hits me earlier when I'm around people not when I'm alone, so I can have that reassurance from people that I love.
Thank you taking time out of your life to respond back to me. It has really opened doors for me to research about. Wishing you the best! 💙
Try to ignore the drs stupid comments. They are in the wrong not you, so insensitive. It’s not something we should go through.
It’s really good you are getting treatment and I wish I’d done more years ago. You have advocated for yourself in getting this far 🙂 you’re doing far better than you’ve given yourself credit for.
the Endo helpline is good and could be useful to talk to someone before surgery.
Mobile phone charger is a must 😂 although you may not stay overnight, if your last down you might. Peppermint mint tea for after, helps settle tum down and something loose to wear after.
Just post if you have any thoughts, questions, etc, usually some response 🙂 this has been one of the best forums.
Let us know how things go, I’m sure you’ll be ok 🙂
We're really sorry to hear that you're feeling so overwhelmed by your endometriosis and the impact it's having on all aspects of your life. If at any time you want to speak to anyone, we have a really wonderful helpline (0808 808 2227) that's manned most days by our brilliant volunteers who all have personal experience of endometriosis and who will be pleased to talk to you about a way forward with regards to treatment options for your endometriosis as well as supporting you with speaking to your university. The times the helpline is open can be found here: endometriosis-uk.org/helpline
Wishing you all the best with your forthcoming laparoscopy. Everyone's recovery times are different, so take it one day at a time, be kind to yourself and let your body take the time it needs to heal.
Take care and reach out whenever you need to - we're all here to support you x
I can’t really add anything to the amazing replies you have got but I wanted to say you’re not worthless bless you. Endo is overwhelming and consuming. You know your body more than anyone and can fight for what you need. There should be support from the uni for chronic illness? Hope you manage to get things in the right track for you but we are all here too x
Yes the replies I've received are amazing. I thought I would get replies to be honest. Yes Endo is very overwhelming and definitely dialled down by others. In terms of support for uni, I have arrangements that are put in place for me. These arrangements are accessed by all teachers and not very difficult to get. Such as I get a one week extension deadline to submit work as I cannot constantly work at the same speed as other student due to the chronic pain. But the thing is and no matter how many times I've fought back and stood my ground, most of the teachers do not want to support me. No matter how many times, I've escalated through seniors, it will last a week or so but then I'll be back at square one. Naturally, I've just become fed up with chasing them around.
The good news is that I've decided to defer the year just to work on myself and put things in the right track. I think it is something that I really need to do and it will be something I will thank myself for in the future.
Thank you so much for your kind words in your reply. The fact that you have replied really has helped me and shown me that I am not alone in this which is what I needed to see. Wishing you all the best! 💜
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No endometriosis - now what?
I don't know what else to do :( advice on BSGE clinic 
No endo found so what the hell is causing my pain?
No relief whatsoever from my symptoms - feeling I have "hit a dead end". What on earth can I do now?
