Feeling very alone and hurt, endo and friendships

I hate pity but I feel so alone and hurt right now. Tonight, I was speaking to a friend about how I am not feeling right. I have a mirena, on the pill and I am very emotional. Before I was diagnosed I noticed a difference where I was over emotional, very high and the deepest of lows.

Anyway this has effected my friendships at uni, I lost a set of friends as I was getting diagnosed. I am so better of without them and have some really good friends now.

Tonight a 'friend' told me to 'sort myself out' and I am full of bull....I have too much 'baggage' and stop making excuses on my behaviour from fatigue and endo.

I told her I am in lots of pain tonight I don't need this I am on morphine and she was like oh yeah yeah whatever more excuses you like to use. I ended up blocking her.

Maybe it is me, I'm trying so hard to get my life back to some sort of normality, I don't like being sensitive to comments.

I don't use my condition as an excuse but when you are on so much medication and on codeine/morphine, you do not think the same to when you are not on painkillers. Plus my body is still getting used to the mirena I think and the pill.

I have a really close friend whose mum suffered from endo so she is really supportive, but I don't want her to worry.

Sorry there are people worse off than me right now, I just don't know where to go to express how I am feeling.

And sorry this is long or doesn't make much sense I am in a morphine daze ATM!

X

11 Replies

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  • I so understand how you feel. I have lost a lot of 'friends' during my suffering which is happening now!

    I am actually thankful that I am no longer involved with these people as these are the times you realise who is really there for you and who actually cares.

    Please do not let those who do not wish to even try to understand what you and I and other sufferers are going through get to you.

    The ones that try and do attempt to support you are the ones that you should focus on and appreciate because your energy is already low!

    I have also learned to enjoy my own company as I mainly spend my time in bed or asleep or balled up in pain. Keep persisting with your doctors and consultants, and whoever wants to be there for you on your treatment journey, allow them. If they cause you to feel like you're making excuses or making you feel upset because of your pain - get rid!!!!

    Wish you all the best x

  • Sending you a great big hug ! Use this forum to sound off as you will find here a wonderful bunch of ladies who do understand how your endo ,the treatments and medications affect you.

    I have endo ,adenomyosis and also have had ME for 12 yrs,during which time many of my friends disappeared.At first it was just being dropped from social activities( was bedbound) and I felt so very hurt as it was like I didn't exist.However the friends and the many new friends who cameinto my life( lots through ME forums) are the ones who I know are my true friends.I can barely express how much I value my truefriends.

    Any hormonal treatment plays havoc.I have just got over 6 months flare stage after going on depo provera jab and Ive been an emotional wreck and also up most nights unable to sleep for pain.I find dihydrocodeine and gabapentin seem to make me wired at night.

    I once read a lovely poem online - it says people come into your lives for a reason ,a season or a lifetime.Google it ! It helped me a lot to realises that some people only come in for a short time and for a specific purpose eg your "friends "that have rejected you may only want you if you are fit to party.You maybe had some fun times,but now they have served their purpose and you must move on.Certainly true friends will stick with you in the good as well as the bad.

    So ditch these friends and concentrate on your close friend.It is hard sometimes as you don't want to bore people with your illnesses,but if you don't confide in people they cant even begin to empathise.My experience with ME has helped me cope better with endo.In some ays they are similar as the pain ,fatigue are hidden .Also unless you have suffered endo pain,most women just cant understand why we endo ladies can be making such a fuss!!

    One thing that may help is some counselling.Could you access some help through your university medical service?Do you get disabled students allowance??

    Is the uni aware of your illness?My sister is a lecturer and I know that she has recently helped a student in similar situation to access counselling and also she got DSA .

    Sending you another hug and please keep posting.

  • I know exactly what you mean. Chronic pain and interrupted poor sleep would make anyone irritable and sensitive. Some people will never have experienced it and so can't possibly understand.

    I got tearful and cross with the entire world last night just because I came home from work and there is so much I wanted to do (just stuff around the house that would make life better) but all the time I am battling against this low grade pain and my body just wants to curl up on itself in bed. People who don't get it say to take painkillers, but the painkillers never touch the tiredness or the wanting to curl up side of things.

    I know I am irritable, but it is as if my body is under attack all the time and I become very resentful of anyone who causes me to use up my energy unnecessarily. I can't understand how other people don't get that - but they don't because, for them, tiredness can be cured with one night's sleep.

    Maybe I'm old and bitter, but I'm not sure 'real' friends actually exist, basically we're all in this on our own. I don't talk to anyone about any of it anymore because I am sick of being told that I must have a low pain threshold or need to get out more and stop dwelling on it etc etc, but I am much more selfish about my time and energy. Now I never tell people it's the endo that's stopping me, 'migraine' is a much more understandable excuse and tends to get people off your back.

  • Hi anneliives, I was reading the replies above and I really agree with daffodil that you should let your tutors at uni know what you're going through (if of course you haven't already). I suffered in silence in my second year and didn't tell anyone and once the truth came out that I was living with a girl with depression who was dragging me down and it was affecting my studies, it was amazing how supportive the tutors were. I think when it comes to stuff like this you will find that often the older, more mature folk in your life will come in to their own. I don't think people of student age are always experienced in life enough to discern between when someone 'needs a kick up the.. ' and is genuinely in pain. Your 'friend' clearly can't discern the difference so obviously isn't the right person to be around right now. I find with friendships in general I love having people in my life from all sorts of backgrounds, with all sorts of personalities, but there are only a few in that bunch who I would open up to about what's really going in me in terms of the endo and especially the emotional affect it can have. Be discerning yourself about who you open up to so you don't get too many knock backs which when you're feeling low and sensitive already will only exacerbate your feelings. Keep your chin up girl, be kind to yourself and I'm sending you a big hug too xx

  • Believe me these people who are telling you to pull yourself together are not worth your precious time or energy **** them! you will find people who care. I know exactly how you feel the loss of friends has happened to me twice over now and to be honest it's just because their lives move on and mine has stayed in the land of endo, if you have one good friend your ok, just think your not going to be like this forever and people come and go depending on our situations. Big hugs keep strong hun xx

  • I also understand in fact I've had to cancel gong to a friends hen do tonight and I text her yesterday, and I've heard nothing from her at all! That says it all. I'm feeling like why would I now go to the wedding?!

  • I completely understand what your going through. Uni is hard enough without being ill. Then having your "friends" treating you like that is awful. Plus being on all sorts of hormones and pain killers just makes your mind go crazy.

    I fell really ill with endo in my third year. I was unable to completely the year and had to take the following year off too. One girl I lived with at the time. (A girl I thought was a very close friend at the time) went around to our group of friends and told them I was putting it on and loads of horrible things. So now I probably speak to about 2 friends from uni and even that's once in a blue moon. But luckily my friends from home where there for me. Unfortunately I cant really say that they have stood by me this time. But also they do have careers, relationships and their own life to take into a count.

    As others have said talk to your uni, get help. Don't try to go through this on your own. For me my family has been the best support I have so if you can open up to them, and this forum is brilliant to have a little rant, get support and see that your not alone. Us laddies on here know what your going through, and will try to give you the best advise we can.

    Hope things start to look up soon.

  • Hi angel

    That sort of low life don't deserve your precious time or effort!!

    They should think themselves luck they haven't got health problems, a good friend never counts how many times you moan or how often you are in floods of tears, but you can count good friends by how many times you are greeted with a big hug when you need one or a chocy cake and wine and a girly film for you both to cry over!

    We are all here for you angel, so you can shout and scream as often as you like!

    I give this special poem to people who are in need of some comfort and support and you definitely need it.

    When angels sense you need them

    And angels always do

    They come unseen from everywhere

    To help and comfort you

    They hover close beside you

    Till all your cares are gone

    Till they can see you're ready

    Once again to carry on

    Then some of them fly away

    And take their gentle touch

    To other hearts that need the love

    Of angels very much

    But one at least stays with you

    As your constant friend and guide

    For guardian angels never leave you

    They are always by your side!

    Print it out and put it where you can get most comfort from it!

    Take care and lots of gentle hugs and angel blessings xx

  • My 'friends' have never been understanding, they didn't want to know me when i was at uni, and when i was home i was too sick to do anything. They then started to b***h and moan and whine and create copious amounts of rumours about me. But one day i had my epiphany, f***k 'em! if they're not nice to you when you need it, why should you ever be there for them? They don't deserve you.

    Its a very extreme reaction i know, but that's more of a last resort. Give them leaflets and as much info as you can. If they still continue to act like that, just ditch them. They're not worth it and the stress it causes you can just make you worse!

  • Ah so sorry to hear that

    Unfortunately people can be cruel but you know this sounds like a person who does not deserve your friendship!

    I am 28 and have learnt a lot over my life as to who true friends are - I love the sentiment of I don't want loads of kind of friends but a few close friends

    I actually have two bbf's at the minute that I depend on...

    My hot water bottle and my painkillers ;-)

    Hope it all works out for you

    Sending virtual hugs

  • Sounds like it's a pretty regular occurrence.

    I've been "forgotten" by "freinds" who got bored of hearing about my pain or my next op

    Infact this evil disease with a nice helping hand from Hashimoto's thyroiditis has managed to drive a huge wedge between myself and my husband too.

    It's taken my glow and my personality and all the fun that went with it, my sister and brother are my best freinds as they both suffer health problems too, I'm very lucky to have them.

    This illness has a lot to answer to for so many of us and it downright sucks!!!

    Don't be upset about people who don't deserve a second thought xx

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