Just a general moan and a heartfelt virtual hug to all us Endo sufferers

So fed up with this. This Endo malarky has evolved, tried and tested me and basically ravaged my body. After all these years of trying to cope, telling myself that this will pass, put the false smile on, you can do it - I really feel I cannot take this any more.

Life being life has been challenging, decisions were made (in haste due to foggy Endo brain?) made worse by trying to cope with 'normal' life experiences due to this? I always wonder if I did not have this, would I still be working in my chosen career? living with my ex in the house we both worked hard to get? My children would be happier/not have mental health issues? Maybe these things would have just happened despite Endo but I would have been able to work on a better outcome without being pulled down by pain, exhaustion or depression/frustration at not being totally all singing and dancing?

Some advice on top of all this moaning please. I came off anti depressants last year, as having been on them forever, I felt that they were not giving me any relief, that and the fact that I felt tired all the time, they were not working. Of course we all know differently, of course it was the Endo. Now months on, another op out of the way, daily issues arising within my family/no let off with the challenges, does anyone think that after hearing this rant, I need to go back on anti depressants? Yes, I know my choice, so the alternative question is - how many of you are on anti depressants due to feeling so rubbish from this?

If I could only get a decent nights sleep every night, I am sure I would be able to cope with the world in a different way, with some energy, insted of dragging myself through every day, unhappy, trying to support my daughter and do 2/3 days of work a week just to earn an extra bit of money to be able to pay my rent....

Wow sorry everyone, life is just so bad at the moment, my happy go lucky approach has disappeared, this I must add, disappeared at least 6 years ago and I cannot seem to get it back.

Hugs to everyone in the same position as me and lets hope they find a cure very very soon x

8 Replies

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  • Hi there. So sorry to hear how things are and have been for you. This blooming endo life is not easy both physically and mentally.

    I can totally sympathise with depression as I am a fellow sufferer of it and have been on medication for it for this and for other issues. I am probably going to ask/state the obvious but have you only ever been on the one type of medication? As some agree/work better for some people than they do on others and also have you been on a high dose? I tried a couple before I found one that helped. It was Fluoxetine. It didn't take away the endo pains, symptoms etc and yes I still had a few days of feeling low, but no where near as low as I did without it and it helped me to cope mentally better with it all.

    I am currently not on any medication and haven't been for past 18 months for 2 reasons: 1 I thought I was strong and could cope without them and 2 I am trying for a baby. However I am struggling and feel if I could I would be going back to my GP to go back on them. So I have been trying other ways. Firstly I tried Reiki but didn't feel that helped (I was also trying this to help aleviate the pain from endo). I am now beginning to undertake Hypnotherapy to see if that can help.

    Enough about me!

    Only you know what the end of the line is for you before you know that you really cannot cope anymore without help. It does sound like everything is becoming too much and perhaps going back to your gp to discuss may help. It may be you can try another antidepressive or they may be able to help you with techniques to help you sleep better. Sorry I can't be of much help, but I wanted to let you know that your words were not ignored and you are not alone. I hope things get easier for you soon x

  • Hi silverandglass.

    The endo has alot to answer for. I can guarantee you have always done the best for your family and with or without the endo life has its challenges. You must be strong as yo have coped with this. I admire all us women. We get on with your lives regardless... W take medication to help us through o ave procedures to keep us going but still it's there and we keep going.

    I too suffer from this horrific on-going pain. It's nothing like anything you can describe and unless you suffer from it you cannot appreciate how it affects ever aspect of your life. I find that I comfort eat when the pain eases. I sleep little and am therefor constantly tired. When the pain is at its worst walking becomes unbearable and I cannot get comfy t all... It's so bad I cry... Best wishes to you. Which treatment have you tried? I m newly diagnosed and am yet to have any treatment.

    Have you gone back to your GP or consultant?

  • Virtual hug back to you.

  • Hi just to let you know I'm on anti depressants too I take nortriptyline and although originally I wasn't convinced I needed them I can honestly say I feel better and am coping much better with everything. They also have helped with the pains in my hip and leg. I still have pains but not so bad that I'm limping!

    I'm sorry your having a tough time and I'm sure the endo is making it harder to cope with the stresses you have and if your not sleeping and are tired that's not helping you cope either so the best advice I can give is speak to your doctor. Like I said I wasn't convinced I needed them until I broke down in tears as I told my doctor how I felt. I actually didn't say much think it was obvious from the tears but she was very sympathetic and told me to try them and I did and I'm so glad my friend convinced me to make that appointment. Anyway maybe they will suggest a different type like squidgy says, which may help but the main thing is finding a way of feeling better and feeling you can cope with everything. I also felt better with accupuncture for a while but only when I was having it regularly and gets expensive so haven't had it for a while. Sending a big hug xx

  • Hi Silverandglass,

    Virtual hugs and love being sent your way!

    I have been diagnosed with endo that has bound my ovary to my insides and interstitial cystitis and at 23 I can't help but feel very bleak about things and know the feelings you have described only too well. The part that is getting to me the most isn't the pain of the endo or the feeling in my bladder, it's the bone-aching exhaustion that comes in waves everyday. No matter how early I go to bed or how much sleep I have I always seem to wake up just as tired (if not more) than the day before.

    I have been told by my consultant to go on anti-depressants for pain management for my bladder mostly however currently am dealing with the symptoms by diet (very strict endo diets - rabbits have more choice than this diet! :p )

    There are days when I can't help but feel that I couldn't possibly do this for 10 more years let alone 50!

    However I think we all need to remember to give ourselves a break and a little credit. That we are all getting through the bad days and surviving this terrible disease that ravages physically and mentally. I find speaking to the women on this forum such a comfort as some days I wonder if the pain and exhaustion is all in my head and this forum reassures me that I'm not being 'weak', I'm just getting through each day the best way I can.

    So I'm sorry I haven't got any answers for you but I just wanted to write to say that I'm sorry you feel so bad, I understand how difficult it can be and me (and all the other ladies on here) are sending you warmth and hugs and a listening ear without you feeling like you need to justify the way you're feeling.

    Catness xxxxxxxxxxx

  • Thanks for the replies everyone - having other advice does go some way into putting everything into perspective and people that understand/are not judgmental is all positive.

    I was on Citalopram (went from 40mg to 20mg) as Fluoxtine made me want to commit suicide! I think the aniti depressants have positive effects but due to not feeling on 'this planet' whilst being on them (again not sure if it was Endo fog or the meds?) I felt I needed to be in control of situations more i.e to be able to read the signs when my daughter is having a crisis. I also thought the fatigue was due to them too. Bottom line, I think at the time I stopped, when so much was happening and me not feeling great, insted of coming off them, perhaps I should have upped the dose to be able to cope better? Anyway, due to not being on them for many months now, I feel a sense of achievement/feeling more? but not coping with the emotional rollercoaster I am on, feeling like I did many years ago when I wasn't on them, crying all the time at the slightest thing/being irrational/snappy.

    @squigy - I hope the hypnotherapy works, even if to relax you somewhat/distract your brain from picking up on the pain? My heart goes out to you if you are trying for a baby with all this stress physically and mentally. You must have tried so many things? I always say that it was fate that I wanted children at a young age (I was 19 with my first 22 with my second) as I had my ovary removed when I was 24 and had the severe Endo symptoms/ops since then and now how difficult it is to conceive with this going on. There was a post on her some time ago with a link to the programme This Morning whereby a Endo sufferer spoke about her heartbreak of losing so many babies before finally having excision some years later. Maybe you could find it to keep your spirits up? I always say though, if they could invent the same hormones as when you are pregnant, the only time I was pain free/spot free/literally glowing, then Endo would be no more but again, everyone is very different. Hope you find a consultant to help you through this.

    @Lilyloulou - By the time I was 16, I realised that I shouldn't be feeling this way/having really heavy periods/days that I couldn't drag myself into school but not realising this wasn't normal as no one really spoke about it that much in those days and was left to just get on with it. My GP gave me Ponstan and told me that it would help with thinning the lining of the womb and was also a painkiller. I suppose being young, I just listened and got on with it - didn't have the opportunity to research. Went on the pill, didn't agree with me, then met my childrens dad, and had them at 19 and since then have had an oophorectomy, which was done as an emergency/fully cut open due to being told for 9 months that I had a water infection, all in my mind..... and when I finally managed to get a gynae appointment/someone to investigate, they panicked and found a chocolate cyst the size of a gala melon (do you believe me now how much pain I was in??). I've also been put on Metformin due to having PCOS too but came off it as the diet was very restrictive and I got fed up with being able to just drink water when I could get out to socialise.Tried the Depo injection but insted of having at least a couple of weeks break from the heaving bleeding, bled constantly for 6 months.... had another lap which didn't relieve the bleeding but had less pain for a couple of years. After that was put on the Mirena which did indeed stop the heavy bleeding although still had spotting/light period every two weeks, which was a nuisance but for a while realised that this must be what it feels like to have a 'normal' period. Still on anti depressants during all that time/had a breakdown at some point? Didn't have sex due to pain/split with both my daughters dad and my next long term parner. That had been working for a while until up to two years ago (maybe more? endo fog) when my body just seemed to be aching more/having more time trying to sleep/more pain/brain fog and realising some of the symptoms seemed a bit different but deep down knew it was Endo. Tried Provera for 51 days (my gynae wanted me to try it for 90 but couldn't as symptoms became so bad, I was on the verge of killing myself) Had to wait 3 months for next appointment to see if the provera had indeed shrunk the Endo and here I am now 3 weeks after another op, having had 3 cysts and Endo removed from between my bowel and womb again. Please do research and write notes from all the posts on here - there are so many people on here who have had so many different types of treatment to me but at least it gives you some faith that there are consultants out there that should know what they are doing. But please insist and keep pestering them as you do not need it to be left for it to get worse - good luck

    @Catness - so sorry you are having to go through this at an early age, I think most women on here can sympathise with you as I am sure you will know by now, we all had symptoms when we first started our periods. I am glad you have this site to ask for advice and get some relief? from the knowledge that is here. It does sound really bleak (and I am sure the post I put on here yesterday didn't help you in how you are feeling?) but at least you know you are not alone in how you are feeling. It isn't all doom and gloom, I have had some periods of time whereby yes, as you said, strength cos that is what keeps you going. Everyone is different and all I can say is that eventually you do come to accept this, although you may not like it. I just hope you have people around you for support and do not have to go through the feeling of inadequacy that I have always felt due to no one understanding and work trying their hardest to 'lay you off' due to too many days off sick. There is so much information now that you have either that or a union on your side to be able to continue to work?

    I am 45 now and gave up my dream career 3 years ago, not just due to Endo but other circumstances but now drag myself into an admin job 2 - 3 days a week as my boss is understanding/I can be flexible and work from home if need be. It doesn't pay a lot but I am able to deal with this crap/my homelife and try to eat/pay rent at least.

    My advice to you now at your age would be try not to isolate yourself too much, make the most of the times you can have fun, (I did at least have a period of time whereby I always went out dancing/drinking/travelled) have the strength to be assertive and not feel 'useless' when the pain/fog takes over, everyone around you need to know this is not your fault, you are not stupid if you cannot string two sentences together sometimes and YOU ARE DEFINITELY NOT PUTTING IT ON.

    Also, try to check what food can make you feel worse. I do have periods of times when i just need to literally 'eat the cupboard' - normally when not in pain and it's not stopping me eat/having an appetite. I know that when I eat chocolate sometimes, I can instantly feel tired, then feel rubbish the next day, so keep this for times I know I am not doing anything. I try to steer away from processed food but will not beat myself up if I do succome. I have not found it hard/it is the way I eat, as I have taken this approach for years and to be honest I do not get 'cravings' or enjoy most 'rubbish' food any more. I would like to be able to eat more fruit/veg but am short on funds some days but get by eating cereal (which I have always loved) I am certain the Endo diet is good for everyone (not looked at it yet) but again, if it is really restrictive, I wouldn't want to try. My advice is perhaps a varied diet with loads of fruit/veg as suggested with fish/chicken, not much meat? Try to be aware of how your body is feeling/reacting to ensure you are getting the optimum health for this illness.

    This is one tough journey, I won't lie, but continue to be you, continue to be strong and care for yourself as much as you can. It does seem like a sentence but you will find ways for you to cope/be that person you are.

    Keep going girls - we can do this xxxxx

  • Thanks for posting this. I'm having a really tough couple of days, in so much pain that I'm having problems walking and cannot get comfortable, just had to stay at home on the sofa. I was only diagnosed in January, and haven't told work yet. I don't know why, I think it feels too personal and so many people think it is just painful periods. So then I lie and say I have a stomach bug and feel guilty.

    Anyway, I turned to this website yesterday and everyone has helped with their stories, I feel much less alone.

    Thank you! xx

  • Agreed we defo can. X

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