Some stuff I'd like to say about endo....

[Duckybun]

Well lying here in bed trying to fall asleep which isn't happening because of my pain despite the tramadol I took before bed and I started thinking about what it was like before the pain got this bad....

I am in mourning, mourning for the girl I just to be. I'd forgotten how mucrh this this disease has stolen from me untill just now when I actually put my life into perspective. The 'bad' times that used to come and go have lengthened so much that for the last 6 months or so they have merged into one long nightmare. I was trying to remember the last time I actually felt truly content and satisfied... It was last summer and I was walking along the road with the sun on my face and I remember just smiling and feeling joy at being able to appreciate the warmth on my skin and the sound of law mowers and the smelll of grass. The only reason i remeber that day is because it had been so long since i had felt that that it shocked me and i made myself lap up eery second of the pureness of it so as to not to forget. Nowadays even walking along the street, it takes all my concentration not to be consumed by the constant physical and mental struggle to fight against the fatigue, soul weary exhaustion and sense of loss, that I never find myself with a natural smile on my face. I mourn for the days when I used to get up in the morning happy, stretch out and feel the muscles in my legs tense and relax and the blood flow into them and the feel of them coming to life. i miss feeling ready to take on the world and anything it could throw at me. I mourn all the 'stuff' I used to love doing, rock climbing, running, salsa classes, going to the pub getting drunk, staying up all night and dancing on tables.... I used to loose track of myself sometimes with all the madness i used to get up to, traveling round south america with my backpack and exploring the world. I miss enjoying the time I spend on this earth....

I seem to spend all my days now disappointing myself, my friends, my family and my work colleagues. I wake up every morning after a night of restless and unrestorative sleep and I feel like my legs are made of lead. I always sleep in because I literally do not have the energy to fight against it anymore. It is easier to close my eyes and go back to sleep for another hour rather than lie there awake but feeling too heavy to move.I am always late.. For everything, I start my day late, which I berate myself for, I run late all day, which I berate myself for, and never feel like I catch up with myself. I'm fed up of having a plan in my head of what I'll do in the morning, but always having to have a plan b in the back of my mind because I know that whatever it is I want to achieve the chances are 90% I won't get it done, and if I do it won't be done on time according to the plan a schedule. I hate that my close family and friends tolerate this and joke about having to factor in 'E***s' time. I hate the fact that people I don't know so well just think I'm crap at time management.

Just once I'd like to wake up and feel joy, it is so exhausting waking up and thinking 'right couple of deep breathes and assess how much energy you're going to have for the day ahead'

I hate having to face the prospet of ivf, and worrying that even if it works I don't have the energy to satisfy myself with an existence that I find fulfilling and stimulating let alone a child.

I hate watching my beloved husband struggle to support my when I am not the woman he married any more, I wish to god I was. I wish I could do all the things that would make us happy, I wish I could make him laugh the way I used to.

This disease has robbed me of my energy, my joy, my fertility and my hope... It has broken my heart

X

Ducky

[Juleyanne]

Sorry to hear you feel so low. You do have a husband at least. My previous partner left me years ago for a younger woman and had a child with her. I am infertile and now menopausal but luckily I wasn't maternal but it still makes you feel inadequate. I now live alone with my cat and pain. My cat is my companion and I adore her. I don't feel able to have a relationship at all as I am bloated and sleep badly due to pain and feel less than half the woman I once was. I have so many horrible bowel and bladder symptoms a relationship would be embarrasing. I do feel for you this condition is a life wrecker but I try to cherish what I have got, a few friends I see when I am not in so much pain, my cat, the odd walk when I can and the beautiful countryside and wildlife and driving my car, reading and writing when I feel up to it. Small but significant, I have used Mindfulness Meditation to help me cope with all the pain and symptoms, it is not easy but I am trying to come to terms with accepting the life I once had is gone and to appreciate the smaller things I still have.

[maydog]

You sound really low , do you have an understanding Dr ? I've had endo all my adult life, though only had it diagnosed when I was 30 and newly married. My 30s were full of dispare and IVF . My husband has put up with so much too. I decided after a badly failed IVF cycle that enough was enough. I was now in my late 30s I had the mirena coil fitted and started the adoption process. I can honestly say I haven't looked back. I have two beautiful children and since my coil my periods have stopped the pain is now almost non existent . I am 44 now and I wish when I was at your stage there had been a site like this to give me support and show me that there is hope after endo . Lots of love x

[Lillil]

Wow Ducky. You have brought me to tears. This is a masterpiece! So to the point, without missing a detail. You are so right that it's not just the pain that tares at our insides but the potential loss and loss we have had and face in our futures. It's how we effect others and how we get angry with ourselves and our situations.

I know someone will reply that people should be positive, luckier than others, should not let it beat you...but I'm sure at some point we have all had these feelings, this despair or concern.

This site at least lets us know, however alone we may feel we will always have each other.

Big Hugs Ducky

Xxx

[jojo777]

All these are true, but if you continue like that you will definitely reach depression.

First of all, have you managed to follow the endo diet? It will give you some of your energy back, will reduce pain and bloating and maybe some supplements too will help you.

Light exercise will be ideal, as pilates, yoga etc, will activate endophirnes and will have more energy and good mood.

Meditation is good if you are up to it too. If you follow diet, supplements etc you will probably end up not needing tablets like tramadol. Have you ever thought that at least half of the lack of energy, low mood, bad thoughts can be from tablets like these ones? So strong and addictive painkillers have always side effects.

Good luck x

[Duckybun]

Hi ladies,

Please don't worry! I really didn't write the blog as a cry for help and I am not depressed, I'm just pragmatic and wanted to write down the reality of this disease for myself, I actually found it very cathartic getting it all out. I think us endo ladie put a brave face on it so much o the time that we forget how we really feel about everything! So I was just being honest about myself with the darkest side of what this is ease has done to my life.

Juleyann, hugs Hun. I'm so sorry this disease has ravaged your life as well, you are most definatley right about cherishing what we have and trust me when I say that I do. My blog was a blow out of all the negativity that's been building up for a while and doesn't have much to say on the positive side but that's not to mean that I don't appreciate the good things hat I do have. I'm glad you have your friends and your cat (I'd love a cat but my allergies don't allow it I'm afraid!)

Mayfog, I'm so glad things have worked out for you we're strting our first ivf in a couple of months but I know that if things don't work out we'll try a limited number of times and move on to adoption, so it's great to hear that the mittens coil has left you pain left and able to cope x

Lill, hugs back at you Hun, xx

Jojo I am on the diet and take so many supplements I rattle! Yes it helps but it still doesn't get rid of the fact that I feel like I have lost a huge part I what I use to be able to do. Thank you for your kindness x

[Lillil in reply to Duckybun]

I totally agree with you. It is good to get these feelings out instead of bottling them up on somewhere like here where people will understand where you are coming from rather than to people who may not, or who maybe you try to protect. Rightly or wrongly to others we cannot change how we feel, but allowing ourselves to process the information can help us to move forward.

I'm so glad it helped you. I knew you weren't depressed, just analysing and processing, I do it a lot too...it's healthy, we all use our minds differently and it's great we can share our experiences.

Xxx

[hogg_katie]

Dear Duckybun thank you for being so honest about your journey with endometriosis, it is a very overwhelming condition to live with and like you I have always felt it took away my life. Have you seen the blogs emlwy.blogspot.co.uk or hello-endo.blogspot.com/ they both have similar stories such as yourself which you may find comforting or inspiring. I would even suggest that you share your story on them also (you could do it anonymously if you wanted) please don't despair you recover and have a happier life ????

Katie

(follow me on Twitter @_EndoHappy)

[Duckybun]

Totally agree thank you for understanding xx

[manicmummy]

My heart goes out to all of you, Duckybun, I have been where you are now, I really have. To any one reading, I was about to start using morphine to cope with the pain, on a trip to A&E, by chance the nurse who took my bloods was an endo sufferer. She told me how cutting wheat and gluten from her diet had helped her. Long story short I was so bad I would have tried anything, much as I love bread I was desperate and really starting to think bad thoughts, about not being able to or wanting to go on with my life because of the pain, and lethergy. I follow a gluten free diet, I can't say I am pain free, but I am in much less pain, and for shorter amounts of time, I can function even during my period. I am managing on over the counter painkillers and hotwater bottles.

When I have had gluten, I do love my bread, I have learned "treat" myself early in the month, if I have had too much it hurts more. Being gluten free has helped enormously with my IBS too. If you search on the internet there is info about it, endo resolved was a site I manged to get alot of information from.

Just try gluten free, I was a bit better after one month, three months down the line I was much better, my partner and family commented on the improvement. No way was it coincidence.

Good luck x

[Duckybun]

Thanks yellow rose. Dh and I have had the work conversations as well. I'm self employed and we've agreed that I need to cut down the number of contracts down, so I'm cutting back big style. It is too much with the stress of trying to meet work commitments and the stress if ivf. When are you starting? We'll be starting to down reg in the next couple of months... Agghhh! Bricking it! We've also been given pretty low odds but I wouldn't forgive myself if I different try any how. All the best for your treatment, xx

Ducky