How to cope with the waiting?..... - Endometriosis UK

Endometriosis UK

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How to cope with the waiting?.....

Bride2be profile image
7 Replies

I have just had an update from the hospital that I may have a wait until July for my lap which I have already been waiting 4 months for. I am pretty much in constant pain and can't take codeine all the time as it just makes me sleep. After two years of having no periods, they have now come back with a vengeance and I'm knocked off my feet for days.

Luckily work are being really patient and I can do some work from home and I have begged to be put on the cancellation list, as, aside from everything else, I'm getting married at the end of June!!! I just want to cry but I'm also now on a higher dose of antidepressants so I am emotionally numb!

What I am really suffering with ontop of the pain, is the constant fatigue and feeling like I have had flu for months. I have no energy, ache all over and feel sick and dizzy most of the time. Does anyone else have this and how do you cope?

I should also mention that my GP, and other docs at the surgery are useless and if your not dying,it dosnt matter...

Sorry for the rant. I feel like I'm boring the left ear off of all my wonderful family and friends who are so excited about the wedding and all I want to do is go to bed :(

Thanks,

K x

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7 Replies
worth71 profile image
worth71

i really feel for you, i waited 18 months for my lap, my own fault as they wouldn't touch me til i'd lost some weight, they didnt understand i'd put on weight due to the symptoms - i then had my pre-op in july, but had my lap just three weeks ago. there's not much i can say or suggest, except there is so much support on here, so rant away, i've had a few rants too this week - i have found that reducing my working hours to minimal helped with fatigue but also when i started losing weight i started walking much more, and as hard as that sounds to do when you're in pain (and it was, still is) i could almost just walk through the pain, its not easy, sometimes i'm limping lol, but since i've been regularly walking i think my fatigue has dropped considerably, or maybe its also the fact i've lost weight too i dont know, we're all different and its just trying different things i guess. the sick and dizzy is probably the medication, codeine makes me very spaced out, so i simply cannot take them when working/driving - take care xx

doubleL profile image
doubleL

God thats awful you have to wait that long, my work do medicals through a private company and going to see them seems to have kicked my doctors up the axxe and i ended up being sent to a private hospital - just wondering if your employer did anything like that, would be worth looking into?

I also feel like im ill constantly sometimes feel like im feeling sorry for myself a bit but its hard when the pain is always there if its not one thing its another.

Really hope everything gets sorted soon for you - its like a never ending torture xx

Cloudyrain profile image
Cloudyrain

Could you go on the combined pill between now and your lap? You can take 3 months back to back and although it often doesn't stop everything for endo sufferers, it can help reduce it. Alternatively norethisterone can be used to help alleviate symptoms.

Sometimes with endo you get pain that is indirect but gets mistaken for endo: often caused by tensing muscles and altering your posture to accommodate the pains. That's where baths and heat bags help. As does stuff like pilates, yoga or actual physical therapy.

Alternatively consider the endo diet - it is very well rated, and even if you can stick to all of it some of it is easy go do and really helpful.

Good luck x

CurlyWurlyAmy profile image
CurlyWurlyAmy

I waited 6mths for my lap. I was not prescribed any medication for my symptoms and they included dizziness, sickness, fatigue, chronic pain, hot flushes etc. I am a single mum and I work full time and there is a lot of driving involved with my job.

I would have a spanish type hand held fan, sugar sweets and cans of coke on me at all times when I was feeling faint - especially in the car and when I got home I would get my daughter fed and then we wud snuggle up in bed at 7pm with a hot water bottle and that would be me until the alarm went off to do it all over again the next day.

I guess you have to keep thinking to yourself that your lap will happen and you just have to stay strong and focused in your mind to get through the waiting. You have to have your own individual daily "survival" plan in place that works for you until then.

I had my lap 3 days ago so I'm not sure just yet how long it will be before I have to go back to my survival plan but we just have to stay strong because we will all get through it - because we are women and it is in our blood to be tough cookies!

Don't let the pain beat you, you have a wonderful wedding to look forward to, try to put that to the forefront of your mind - is there any chance u can reduce your hours at work? Or take unpaid sabbatical for the summer?

I hope you are ok x

wp22 profile image
wp22

Me too, you are exactly the same as me I too have been waiting 4months and hear last 2weeks ago I now have to wait until July. 6months in total and they make out that the longest we should wait for any op is a maximum of 18weeks. JOKE! I am so annoyed and disappointed by all of this messing around I just want it done and get on with my life. Its a farse X

Bride2be profile image
Bride2be

My sentiment exactly. Im so sick of all this waiting and not being taken seriously. I'm lucky enough to have not been in hospital for a long time but it just seems like no one has any time to really look after people. To them we're just a number, but its our lives which are being affected. It is a farse and its crazy that it is, as it affects so many women!!! X

sweetpumpkin profile image
sweetpumpkin

Hi all,

I am so depressed due to my endo only diagnosed in October 2012 after a urgent scan and a lapo.I have being so tired,in pain,angry,constipated and on top of it I have to work as a nurse which does not help.My manager at work is not very helpful and understanding at all.I was meant to have surgery on the 8th of January 2013 to remove 2 chocolate cysts and adhesion of my ovaries to my bowel.Surgery was cancelled and here I am still waiting,pain is horrible and I am totally exhausted by it all.I had a 3 months zoladex course,my period is not back,so is the pain and bloateness.Sorry for ranting :((

I wish you all the best with your wedding...sorry about my not so happy post.

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