The mental health side of endo, any advice?

Hey guys, I was just after some advice from your own personal experiences if possible! Although I've been in pain for what seems like forever, I was only diagnosed last month. Unfortunately I had a lot of issues with my lap and I'm now off work until further notice.

How does everyone explain to friends, family, colleagues what's going on in their head when you don't know yourself? I haven't actually been given any information about endo so I've relied on websites and groups for support (until my follow up in march). I know it's not been long that I've had an official answer but, but my friends are so so so ignorant, no matter how hard I try to explain what's happened/happening.

Being off work is making me depressed (more so than normal haha) , and losing friends because I'm 'so blunt' at the moment and I'm 'off work, so why can't you reply to my messages quicker?' How can I get them to see I'm not just being moody, i not only have a disease but I've got a hematoma that is extremely painful... and that's just one of many post op complications. Being off work is driving me crazy and I don't think I've ever been so stressed in my life 😂 Any advice would be appreciated as I'm stuck on what to do next!

Thanks in advance x

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  • I'm at home all day too since my high school has kicked me out due to me being 17 and my attendance being so bad from pain, I'm awaiting to be accepted into another school.

    Can you pick up any hobbies?

    I've picked up singing, jewelry making, sewing, cream making, and yoga.

    But most of my day is spent in bed which I admit is really boring, but don't get mad at yourself your body just needs that. Try to pace yourself so when you do get back to work you don't over do it.

  • Thank you so much! Good luck with your new school, lets hope they're a bit more understanding. I'll definitely look into finding something other than candy crush to fill my time haha!

  • hello there....

    im not sure how to aproach this subject with because my answer may be scary...

    first of all...if you are already loosing friends because they dont understand and you have to try hard to keep them LET them go....they should be the one to comfort you now!!!! Yes you can let them know you are not well physically and mentally BUT you hsve to focus on youself no on chasing people who clearly dont care.....

    Trust me your helth is WAY to important.

    Sadly i can confidently say majority of women with endo feels lonely or alienated...even when they loved ones next to them....it just because nobody understand the pain you going through physical and mental...

    Im /was stage 4 agressive endo. had 11 hours long surgery with doctor who is pioneer in endometriosis only 12 days ago....Im in bed recoveing now...

    to me even i had big supporting network i got the most mental help from other women with endo....im not saying thats also for you BUT im telling you possibility...

    i had and still have friends looking after me and its great but everything whats happened i have to 'digest' myself...

    i wish you all the best xx

  • Thanks for your advice!!! It's such a shame that so many woman feel like this because of something out of our control. So far, I'm finding groups like this a god send... however I do feel like a pain when I write in them but I think that's just my anxiety talking haha. Everyone seems super nice and willing to help! I hope you have a speedy recovery lovely, lets hope it gives you some relief! Xxx

  • This is a horrible disease and a very lonely one. I was diagnosed with depression far longer ago than endo so I've learnt to live with that first.

    It's hard and some days you need to just go with it and sleep and watch tv. And don't be hard on yourself. When you're a bit better tell friends you are struggling and would appreciate their help but understand you are hard to help as you yourself don't even know what will help.

    I'd get some anti depressants if you can from gp or St. John's wort from a health found shop to give your system a bit of support. Then when they are in your system and you hopefully feel a bit better do please get some counselling. Your gp can refer you. Your work may have employee assistance too. And if nothing else call the samaritans to just talk it through with some one that will just listen and not judge.

    Hopefully all of that will help you a bit which in turn will mean you'll have strategies to cope with others and things to tell them. Most important is to be kind to yourself and not be too hard on yourself.

    Take care and good luck

  • Thank you so much. I was diagnosed with anxiety and depression a few years ago, but weaned myself of meds because I thought it was time to try and cope on my own, then boom this comes along! Sod's law. A few people have mentioned counselling and I'm no stranger so it's something I will more than likely do! Thanks for your advice and I hope you're well x

  • Sure counseling can help you to maybe learn to accept the pain and some ways to maybe cope with it but if the counselor never had it then I'd say time wasted .

    Who knows ? Maybe hormones making the mess also help get depression going .

    In any case

    You will find that anyone in long term pain there will be depression.

    For all pain.

    If it goes on long enough your body gets tired of fighting .

    If you are not depressed I'd be surprised .

    But you can do things to swing it better in your favor

    Take advantage of good days.

    Go for walks. Hang out with friends .

    Swimming .

    See a good movie .

    Even if the good days are not a lot make the most of them when they come

    Overall your health will improve with good food excersise and happy moments .

    Nobody gets happy 24/7

  • Hey,

    One of the most true posts I have read - no one understands what goes through your head and to be honest no one ever will. You need to have a great support network and if your friends aren't cutting it then are they really your friends? Sometimes "friends" can be all for them and none for anyone us, I had a few likes this and I just cut ties with them. They didn't seem bothered so why should I? Its difficult, I get that, but try to do an activity which makes you happy - of course the way your body feels physically permitting.

    I find these forum a great place to let my feelings go and get the advice I want; have you tried writing a blog? Not necessary to post online or anywhere but just solely for yourself? So you can express your feelings on paper, feel like you are getting them off your chest?

    Hopefully your review in March goes well and up until then you can be as relaxed as possible. Enjoy your time off work, I know it can get boring and feel depressing but use your time off to "find yourself"... go for walks, draw, write, find ways to channel your anger on the world for not getting it. :) xx

    P.S. have you explained to your friends what actually is wrong? explain exactly what is going on and how you feel, they might surprise you and be there xx

  • I lost literally all my friends after getting diagnosed and for other reasons, and I work full time which is exhausting so weekends are spent in bed recovering. I've had depression for a while but this has made it a lot worse, what with this and vaginismus I just get so fed up with having a 'broken' body and how I see myself, but it's all about taking one day at a time and remembering that mental health is just as important as physical health! Hobbies are a great distraction when you have the energy for them, but don't beat yourself up when you don't! I try to work out lightly once a week and dilate once a week but it's good to know that you don't HAVE to do them in order to feel good about yourself.

    Hope that helps a little! x

  • Hi I know how you feel . In the early days I didn't realise it could come back in some people . I thought it was just a matter of removing a cyst and a 6 month of zolodex . Endometriosis uk is good as is this site . Find out as much as you can from people on here . The NHS might hzve you believe they have done their bit and discharge you time and time again . That said the NHS website does explain it can be incurable but managed hopefully so it doesn't interfere with your life too much. There are only a few options turning off your ovaries which are a mainly (by gonadotropin agonists or surgery to remove them or natural menopause ) or more up and coming is removal of the affected areas excision rather than laser seems to be touted as better and there have been good results with that but few surgeons seem to be sufficiently specialised at doing that . At least if you get to a bsge end centre you have a better chance at them doing this exision in a way that produces results. Scarring from surgery can cause issues in itself so you need the minimum of surgery if you can. As regards work mine is now at least qualifying as a disability under equalities act . It took 15 years of protesting about it to them like '!!! Maybe try to explain to your manager and pick out a few closest friends to explain your in a lot of pain and it's taking time to sort it out. I'm not zen advocate of pain relief that is strong but to if you need it to sleep and keep your sanity then pls do take them . Your welcome to pm me if you gave any questions. Sorry I hope I have answered yours . I do agree though it is hard getting through to people and getting across it's not always period pain . The endo if stimulated can still cause pain for example if it's on your large intestine or elsewhere that's Why hysterectomy isn't always a cure . And docs didn't really spell this out for me . In fact I have to spell it out for them sometimes. All the best

    Xxxx

  • Ps and its up to you when u reply to a message . Ah the joys of social network sites and mobile phones. Xx

  • People who have no empathy or do not walk in your shoes just may never get it.

    In those cases I feel no obligation to be truthful to them or try to explain anything .

    They will think what they want don't waste your time

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