How to get my life together again?

I have endo,ovarian cysts and also not have nerve problems due to all my operations, im a manic depressive and i am on alot of other meds. I had to leave school and do my work at home due to the fact i could no longer go to school, it was hard as this illness usually effects people in their twenties and up and no friends or family had heard of this illness.

After my school years i attempted college and it became impossible for me to go to college as there were so many days i could not go to college and i was chucked out due to this. (although when they took me on, they knew about my illness)

Anyway, ive been ill for about 5 years now, i was literally just 14 when diagnosed, ive been with my boyfriend for 2 years, and im really sick of bein in all the time and not being able to do anything, i just dont know how to get out of this rut, i really need some help and my doctors and local hospital are useless.

please help, i cant carry on like this anymore!!!

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  • This sounds a bit familiar! I've had endo since I started my period, literally from the very first one and 13/14yrs. It went undiagnosed until last year at the age of 29. I learnt I had to take control of myself as much as possible from my early twenties, no one else was going to do it for me, I'm very lucky and am only sick from just before my period until just after - so about 7days out of every month.

    I found exercise aided me a lot. I do yoga and pilates as well as things like dancing etc to help get my endorphins going, inverted yoga poses help me and pilates makes my core stronger and better able to deal with the waves of pain. I was also depressed for a few years as I felt like I'd lost control of myself and didn't know what to do about it, I spoke to a counsellor. I've also improved my nutrition - lots of fruit, veg and fish. I'm also lucky that I've got a partner that learnt about my issues and is really supportive - he usually helps carry me to bed when I collapse on the floor with pain.

    Would you be able to study your course remotely - so via internet or correspondence, with a different college? There'd be less time pressure and you can do it when you're well. Is there a endo support group near you? The only advice I can offer that has helped me, is accepting this is what you have, give people some factsheets - you'll find them on the endo website, make some lifestyle changes - more exercise and better nutrition. Realise you will be sick, so make sure you've hot water bottles on hand, whatever pain medication the doc gives you and some good films or books to distract you. You're hormones will be entirely up the left - so be aware of the effect they'll have on your mood and that it will pass. Find a support group or a counsellor to help you with anything that's on your mind. Letting it out is better than bottling it up.

    Don't give up on yourself at this stage. It's a horrible situation to be in, but you're in it, so try and grab some control back, it does wonders for your heart. I hope this helps a bit, these are things that have gradually worked for me. There is no quick solution unfortunately! I now have a brilliant full time job and I've sat down and explained everything - so they let me work from home when I'm ill - there are hours when I'm fine and able to work, so would rather. The exercise thing is something you have to work at constantly, it will take a while for you to notice an improvement. The better nutrition - well it manages your weight and your skin - both look good so the wee confidence boost is always welcome.

    I've had one laparoscopy done - last year, my endo is back full force, so I'm now starting the blood tests and checks again. Have you pushed for further procedures from your doctor. You will have to push with some doctors to get further treatment. Tell him your quality of life has gone to the dogs and you need help, arm yourself with as much knowledge about it as possible and don't take no for an answer. Sorry for such a long answer!

  • Thankyou so much! Made me feel so much better, it really did! Its hard as i dont know anybody else with endo, i know people with cysts but not endo and theres no support groups any where in my area! Its so hard not to give up some days!! But its lovely to know people can get through it! Thanks soo soo much!!

  • Dear Victoria,

    What can I say but ditto ditto, I also had endo ovarian cysts and adenomyosis from the onset of my periods and was diagnosed when I was 29 and am now 45. So I feel I know exactly what you are going through and how alone you can sometimes feel. Yoga saved my life it really calmed my nerves and made me feel in control of my body. Being in pain is as with any long term illnes depressing and exhausting. Firstly you need to find sufficient ways of managing your pain you can ask your doctor about pain management courses. I would also ask your GP if you can see a therapist i know there is a lot of stigma attatched to this but I found the help and support of a professional invaluable in different ways than friends, family, or boyfriends. Exercise really is the key, it will lift your spirits and generally makes you feel better about yourself even if you have to force yourself the rewards are always worth it. My personal favourite is Yoga if you are not up to a class try a dvd or look on line youtube ....I also found accupuncuture helpful i went weekly to a training university it wasnt very expensive. I did a hypnosis course, read books on NLP both fascinating and helpful. Nutrition plays a very important part as to how you will feel day to day there is a very good book by Dian Shepperson MillsEndometriosis-Healing-Fertility-Through nutrition. You dont have to try all of these just try one and see how you get on.

    I hope this has been a little helpful. Endo it is overwhelming but chin up tiger !

    Lu x

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