Having endo makes me feel so down at times, most of the time i JUST GET ON WITH IT because i think to myself its not cancer Deb, there are alot of people out there that have alot worse illness then endo, people with cancer seem strong and try to make the most of life so why cant i feel like that with endo.

people around me dont say anything about endo to me but the moment i say " my back is killing me " or " im so tired " the look on thier faces says it all. i often think wouldnt life for everyone be better if i wasnt here moaning about pain and being tired?. i mean what am i here for ? yes i go to work yes most of the time i put a brave face on but i dont go anywhere, when i try to do my houswork im in pain so i end up sat on my sofa , bed or pc doing nothing.

I truly dont understand what my life is ment to be about i feel like im just here to suffer.

sorry for the rant but if i talk to anyone about these feelings they dont understand and they think quick check she has taken her antideprsants. my partner is the only one that actuly says " babe i know its frustrating for you and its not only you that is going through this I M TOO, i understand it gets you down and you need to let it out ". he then cuddles me and lets me cry like a baby on his shoulder, it does help to get it off your chest yes its an unfair disease and it rules our life but let it out once in a while i also keep a dairy that i write all sorts of things in but when im really down thats the first thing i do get my diary out and scribble, draw angry faces, sware.

I just felt like i would share this with you guys cos if anyone is going to know how i feel its you guys xx

I wish you all a pain free life

Debbie x

29 Replies

  • We are all here for a reason, if you have children especially need to be here! and I too feel exactly the same, try to convince myself that after 30 years of this rubbish, I should just except it. Isn't that what they tell you? acceptance is part of the process?

    I am glad you have such an understanding partner, I have been through 2 long terms (approx 10 years each) on my own for the last 7. I go through so many realisations when I try to convince myself that I needed to leave them due to them being 'damaging'. You spend so much time feeling down, sleeping, not wanting sex due to pain that you start to believe that you are worthless/weak so the ones who treat you badly take advantage of that. I was lucky that I had a massive realisation and stopped the idle threats and accusations of having an affair cos I had to get up out of bed in the middle of the night to go downstairs to ride through another bout of excruciating pain..... Still, part of me also convinced myself that they were better off without someone that couldn't always attend invites, do the housework, deal with the kids and be in a 'bubble' most of the time. Lucky for them, they have both found new partners (literally within months which also convinces me that yes, they had had enough of me too) only sometimes I can say at least I am not being psychologically damaged, physically abused any more, some other poor person is......

    I came off the anti depressants about 7 months ago as I am currently going through a hard time with the Endo and I convinced myself that the meds were making me even tireder, really weren't making any difference to my mood, felt even more 'out of it' but it is only now that I realise that it is indeed the Endo making me feel like this and not them! I am glad to not be taking them any more due to being on them for so many years but like you, in desperate times, I wonder if it was them ensuring I did not try to kill myself? I do feel different this time around (my last really bad period of Endo was 2005 and I literally had a breakdown and couldn't go to work for 6 months) I had a lap and a mirena fitted for heavy periods 2 years later and it seemed at last I was getting to an end of it all. For the first time in my life I had what i could only say was 'normal' period pains, light periods, although irregular and sometimes only 2 weeks apart, I could at least have 3 weeks of semi- normal compared to 3 weeks of complete agony, tearfulness, tiredness and 1 being 'myself'.

    Just because you put on that brave face, the false smile all the time, people around you eventually get fed up with you, even stop phoning (my fault also, as I am normally in bed or just not in the mood to talk, that's why this is so good) but I know if I personally knew someone in my position and I was 'normal' I would ensure I rang them at least once a week just in case that person had been stuck indoors for days/in bed and needed just a friendly voice to hear..... I know it isn't all their fault for not understanding but don't make me feel guilty when I haven't rang for weeks, I haven't been out living the high life/spending time with my other friends, leaving you out, I have been in bed, like you said, just trying to cope with the pain, get some sleep or if really bored, trying to concentrate on the TV.

    I think the more you are in tune with your body, the more it upsets you when it all starts going downhill. I do remember a time when i was happy, could manage a few more things than what I can cope with now, perhaps drawing on this makes sure you don't do anything silly?

    Again, I think the years of trying to fight this, convincing ourselves that we are normal, may be coming to an end the older you get. The normal process of getting older means its harder to fight maybe? also what you need to remember is that you are strong, had to be strong and just maybe, you can't be brave any longer? Why punish yourself continuously? cos when you are down, the thoughts tell you that you shouldn't be feeling like this, acting like a 90 year old. Tell yourself off and try to accept. If no one else around you can accept this, then that is their problem. Who is to say you have to be the life and soul of the party all the time. Deep down, you must be doing something worthwhile? You still work, you still have your partner, as hard as it might be. This alone tells you that whatever you do in life, that is the reason. I bet you are a lovely person, please believe this yourself and don't beat yourself up too much. This is a 'real' illness and whether it is life threatening or not, it will always be a struggle as it just doesn't go away. Next time someone raises their eyebrows when you say you have a back ache, be assertive and say, "I bet if you had a backache you would take painkillers and go to bed and I bet this only happens once every few years or so. Imagine what it would feel like if this was every week/every day"..... people need to be told. Not easy, I know cos in reality, you end up not bothering to say anything at all, therefore everyone around you thinks you are ok. My so called friend can be quite nasty sometimes and if she gets pain, she always says to me "at least you can take strong painkillers, I can only take paracetamol" Like I want to be on strong pain killers all the time!!!! I have to make her realise that she is being mean and when the brain is working, I do indeed tell her that at least she is not feeling that pain every bloody day! I hate having to play one upmanship on pain! some people say such stupid things.....

    Sorry, I have gone on so much. This website is the first I have been on and I have so much to get off my chest, when you said about being depressed, I knew exactly what you meant. I wish other people empathised on a level that made you feel better. I know that if one of my friends just visited for a cuppa, it would make my day but I think that boat has well and truly gone. Why would someone want to just sit and listen to me moan?

    Keep going, there is some light, we have this for a reason, the reason is we are the strongest, the most understanding, people around, it is still all worth it. xxx

  • Me too ladies, I have no children and am 46 now. What path do I take, not the normal mother, grandmother one. So is there a point to being like this for the next 30 years, just the treadmill of home, work and sleep. No energy to plan anything, constant pelvic and back pain and no one understanding how you really feel? xxx

  • Some sad stories, we sit here reading and understanding exactly how each other feels, I lead a double life an endo one full of pain nod misery and the other fake smiling and bubbly personality, to be honest this is the only way I can do it. Ladies life is worth it I believe we are the strongest ladies and WE were given this awful disease as we are stronger than most and the only ones who can cope. This group is inspirational and understanding and I thank god I found it. Big hug to everyone xxx

  • How many of you keep a dairy ? I truly think i would of gone mad without mine it really does help.

    i hate that feeling when you just want someone to sit and listen to you so you can get it off chest but saying to myself " whats the point in trying to talk to them, they dont want to feel down listening to me, they dont have endo they can come and go as they please so what do they care " no one calls me anymore or asks me if i want to do anything which tells me they have said to themselfs " whats the point in asking debbie she wont want to go or she will only say no". i know there is alot of you that will know what im saying. my family say they understand and then they dont bother with me untill they need a favour and like i said my partner is the only one that shows he cares not just when i have surgery but everyday.

  • hi JustMichelle,

    If you want to keep a dairy all you need is an A5 notebook and just start writing how you feel, how mad you are at the world, i start by saying " here i am again this week has been ........... " thats it im off writing a book lol . the best bit is you can say whatever you want about whoever you want and no one will see it.

    trust me it makes you feel alot less stressed once you write it down ladies.

  • lol if it helps hun do what you gotta do x

  • Hi girls this is my first post I went for a scan yesterday and they said that my endometrium is coarse I think I've probably been suffering since my periods from age 11 I'm now 43 I've bee told i Have ibs but now it's got to the point of this month horrendous pain but even worse my moods are awful for two weeks I've been like another person and its awful, I was told I have adenymosis but also my right ovary is rigid, I'm due to see a gyni in 4 weeks time, I never thought that low moods thru endo (even tho I haven't been diagnosed yet) could make you feel so rotten have sympathy with every one :( x x

  • Hi Girls, I have just read through this whole post.... and for the first time I dont feel like a total nutcase. I can relate to all of it. I used to keep a diary years ago and i must admit, I should pick it back up, it can really help. Im 25 had problems since my periods began at 12 and was diagnosed at 15. I have all these same thoughts too. When people back off and dont understand it cann get pretty lonely and it makes you think your nuts. But weve all had to battle so hard to get where we are and just cope and that is a massive acheivement. Its so nice to speak to people who truely get it.

    Hugs to everyone and hope theres a lot of pain free days to go around... x

  • I have a lot of self hatred. My whole life has been plagued by mood swings, tiredness and pain. I got my period at 9 and only found out a year ago I had stage 4 endo. I am 31.

    I have had 2 ops so far and I;m back to being in pain again.

    I know exactly how you feel op. It just feels pointless.

    Lots of love to all.

  • Hi when you had your first period at 9 were they painful I had to take days of school every month from age 11 thought this was normal, I found it hard to get pregnant first time round thinking it was normal now with suspected ibs which I now know probably is down to endo, I know how u feel with all the pain and really sympathise with u Hunni hope u get sorted x x

  • Yes they were and extremely heavy which was kind of terrifying. I also started to have anxiety and fatigue at that point which turned me into a completely different girl than I had been before my periods hit.

    I visited the doctors constantly over the years and was told everything from Gastroentiritis to 'you are just lazy everyone is different' before they found the endo. I was also told 'You are a wuss it's just period pain' by a doctor in the ER when I fainted in a public bathroom.

    There really needs to be a an awareness shakeup over endo. Why isn't it taught to kids in sex education. It's not rare after all.

  • I used to feel exactly the same when I was 11 my mother never explained about them we wasnt taught in school if you should be getting all the pain that like you or I was, I was treated for ibs from the age of 14 and now only years down the line do you begin to piece things together, I've constantly got a dragging pain down my right side and over the years have ended up in hospital with suspected appendicitis only to be told its my bowels, like you say there isn't enough information to young girls about this condition we just think that it's normal to have to feel like this xx

  • Hi JustMichelle

    Try to persuade the docs not to give you a hysterectomy, I have been told it does not solve the problem and as you are so young, I feel it will affect you mentally too, knowing you could not have children....

    I would recommend the Mirena - lighter periods, less pain. Polycystic ovaries are a pain but I was given Metformin some years ago (this is for diabetics, they think PCOS is related to up and down insulin levels) I gave them a go but everything was too restrictive, can't eat this, can't drink that and basically I thought what with feeling like crap with Endo, I didn't want to add to the lack of socialness etc i.e I was drinking water in the pub!! Not drinking doesn't bother me now I am much older.....

    How did they diagnose Andemyosis? and did they not 'laser' this away? I had not heard of this until I came on here, but after having heavy periods for so many years, I bet this was part of what caused that?

    Try to eat as healthily as you can too - yea hard when you are in pain and your appetite goes, you are too tired to think what to eat. I am so aware of my body now that I know that if I eat chocolate, i will either fall asleep or feel a bit crappy the next day. Doesn't always happen but I make sure I am at home, its not too late and I have nothing planned the next day if I eat some! lol

    You can change your gynae if you request, so don't get beaten down. If you can, take someone with you, cos if you are anything like me, I always forget to say what I need to say and after so many years/ops what else can you say to them? JUST BLOODY SORT IT OUT!!!

    Keep positive and read up more on here or websites or the Endometriosis helpline. These should give you the information you need xxx

  • I know that feeling. I am fairly reclusive due to this horrible condition together with adhesions, diverculitis and an arthritic right hip and starting to go through the menopause, it is incredibly hard to get through some days and keep smiling because of pain and symptoms. I also know what you mean about some people's 'get on with it' attitude to endo and adhesions who haven't had to endure it themselves! I live for the day when society wakes up to the reality of life with endo and adhesions and we are all finally acknowledged as 'really in pain' and having to live and cope with an often debilitating disabling painful condition. Until that day, at least we all have each other and these forums to communicate with those who relate completely to what we are experiencing.

  • i was given as a last resort the zoladex injections which i wished i never tried not only are they painful but they caused me to become badly depressed as if i didnt have enough problems to deal with.

    Then they did a total Hysterectomy took the lot exceptfor shell of cervix as it was too badly stuck to my bowel.

    I am now 1 year post Hysterectomy and still in pain and getting sent back to Guyne hopefully they will do a Lap to see what the hell is going on ? I mean what else can they remove?.

    Oh i forgot i also ended up with my appendix being removed right at the start of all this as they thought the pain was that durrrr.

    On the plus side I have a wonderfull 17 year old son Jamie and I couldnt be prouder of him, I also have the best partner ever Simon, he is fantastic he supports me soooo much he does the washing, cooking, cleaning etc.... he also works so he is the one person other than my son that i could not live without. Endo is so hard on him also as he has to watch me in pain, suffer no sex, mood swings and countless opperations he truly is the best.

    Please God let us all find some sort of comfort and get us through this xx

  • Hi , wierd they took my appendix out first too!

  • Hi angel,

    I tell ya its lucky we need our hearts cos they would take that as well lol x

    its a joke they have all that education and they cant deal with endo. we are all beter educated on it then they are, shame we cant do our own ops lol x

  • Lol.. I totally agree. Iv found out more on this fab site in 2 weeks than i have of 6 yrs at docs/gynes.... I once in a fit of anger and pain threatened to cut my own uterus out at hospital ! Needless to say it fell on deaf ears! I was that desperate to make the pain stop..gota laugh or ud cry! X

  • Hi girls,

    I've been reading some of your stories, and I'm glad I'm not alone but I was wondering....

    Have any of you heard of or thought about doing a tea and cake afternoon in a community hall, so that maybe we could all meet up and just talk directly about our experiences.

    It may sound a stupid idea, but maybe it could help just having someone to talk to face to face?

    Let me know we could set up little meeting groups cause I know for years of feeling severely depressed and even thinking suicide and having friends come to check I haven't killed myself all cause of Endo which I didn't even know I had at the time, that maybe having a place to go so I could talk to people going through what I am would have really helped me.

    Keeps your chins up girls xx

  • Its something worth thinking about i think

  • Sounds like a good idea hun x

  • Thanks I just thought it might help we could have a giggle lift eachothers spirits etc, the have meeting groups for people living with being an alcoholic which is a disease of addiction, so why can't we have one?


  • Yes i agree we prob all live miles away, What area you from?

  • Mite prove a pain as we probs all live miles apart tho? U know it really is nice to have this site to turn to..x

  • Yeah definitely burying I meant we could set uploads of different groups in different parts of country sort of thing xx

  • I'm in Birmingham, there are more than 2Million women in the UK with Endo so I'm sure there would be enough women to join a group in every town and city even if we didn't meet up personally from this site, cause there are probably a lot of women who are unfortunate and haven't found this site, I do see what you mean tho could prove difficult xx

  • I live just on coast not far from newcastle. It would be interesting to see if it could work tho- i think a meet and greet support group would be fab x

  • Yeah that would be good :) im in london, would be nice to sit with cup of tea and share tips etc.....

  • Hi I have been on the Endometriosis.uk.org site and it informs you of groups that meet up every month I think? I have contacted one that is near me, Enfield but I know they have other groups in different parts of the country.

    I contacted the meeting organiser and she has emailed me with some details. I am aiming to go if I can get out as it is in the evening (normally so tired by then) but so desperate to meet other women going through this as stated before, not many people understand this crap.

    So yes, meeting in afternoons would be great but we are scattered too far and wide. Also, a lot of us work still (well, struggle in is the appropriate word I think) so evenings are the only time to meet.

    Good luck in your search and when I have managed to get to my first meeting, I will tell you all about it.

    Keep strong x

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