Too many years of this....

[silverandglass]

After 30 years and ops and meds, dragging myself through every day, surely things should be starting to change? Since my last op (July 2013) I have not been able to carry out many tasks without feeling totally exhausted. I have tried to pace myself, do little exercise, take the painkillers but still haven't really moved on. I took myself to A&E last year as I couldn't walk or lift things - they just piled me with more painkillers and told me to get my doc to refer me for an X-ray. I spent the next month totally bed bound , doc saying no point having an X-ray - it was cos I was not moving!!!! Since then I have had a couple of infections (ears, urine and belly button) I may add that I have had nothing like this for years which have really bought me down. In May this year I had finally had enough of only being able to walk for an hour without pain exhaustion and managed to go through PALS to get my gynae to refer me for an MRI. Got the results last week. They found ademyosis and fibroids and the back one showed some degeneration. So annoyed with my gynae cos he has now said the degeneration has caused the problems with my back ( so since I was 16, my back has been like this?) and has just referred me to a pain clinic and sent a letter to my GP to refer to back specialist. Sorry for rant but its as if he is happy my back is a bit dodgy cos now he hasn't got to deal with the Endo/ademyosis (not that I could face another op) and I have to now go through the process of convincing everyone that yes, my back may be shot but I am still in pain, feeling crap, positively desperate at times due to this bloody illness! I know all the GP will do is say Physio for you - I'd love to be able to manage anything and this is nonsense u are talking about as you have had the Endo removed...... Gah I'm going completely insane. I sure u ladies are also in the same boat with this. We so need a break from the hospital and constant explaining to everyone as to how we feel. Is there anyone on here who has ademyosis aswell as Endo? Not sure where to go from here. Thanks for listening x

[Ppdotter]

Oh I read your post and just had to reply as I know the feeling so well. I have just been told I need another lap or Zoladex.. Again and cannot face either. For 30 years I too have battled endo and severe migraines and had every drug going and all that goes with it. I have mirena and take mini pills and still my endo is back. I work part time and everyy day is a battle to get to work and stay there. This is after 4 years on incap benefit. Just want to send you lots of healing hugs and say dont give up. Its sooooo hard I know and I am longing for menopause now in the hopes this will all stop. It ruins the quality of your life. My motto now is" if I can I will - if I cant u know why". Youre not alone but I know also the feeling of isolation. That's why this forum is so great. Take care if yourself xx

[silverandglass in reply to Ppdotter]

Thank you for your reply. I am also saying this to my family and friends - who still don't get it!

I'm outta treatments but will continue with pain relief. I do get down and worry that all this bashing to the body will mean a shorter life - one that has only been half lived anyway .......

I worked two days a week before my last op and it was defs a struggle but more so cos bosses expect you to work at break neck speed when your body doesn't move at that speed, the cogs don't wurrrr at that speed due lack of sleep or the constant niggle of pain. Can't face it any more or the little digs about how u work ..... Good for U if u can keep it up, we all need something to aim for to keep sane.

You said you are on incapacity benefit. Was that a hard process? Is Endo being recognised as a disability now?

This forum is excellent and I have learnt so much from it too. The docs treat the medical side of this but are truly not aware of how it really affects u - even when they have seen you crying and so exhausted you can't even string a sentence together.

Lots of healing thoughts back to you too and some calm/pain free time for you to enjoy.

Kim xxx

[Ppdotter in reply to silverandglass]

Hi Kim

I was on incap benefit for about four years. It wasnt easy but I was totally incapable of holdin a job down. It was granted as migraines and endo with anaemia were so bad I was not working and my husband was helping me until gp said to apply. I really hope things improve for you - im waiting for menopause in the hopes of relief!

Feel free to keep in touch if you feel it helps.

Im at work today with abdo and head pain dosed up with pks and waiting for home time. I sleep so much too im in bed by 8! Lol. Old before my time.

Take care xx

[silverandglass]

You must be completely exhausted with the migraines too. Luckily I haven't suffered in the past, the odd hormonal headache or two but last month I defs had 3 migraines! The pain was so bad I was sick on nothing! It relieved the pain enough for me to sleep and boy did I. 3 days. Everything hurt at that point. I really feel for you. I thought it may have been caused by having a glass of wine as you probably know, having a few is out of the question cos why would you want to feel so rubbish when u already do? Luckily I like lime and soda....

It makes me mad as we all know this Endo and even your migraines are caused by hormones. I have asked my GP and gynae so many times to refer me to an endincrinologist (not sure how its spelt) but get knocked back by saying they only deal with diabetes! Well, a shame for anyone who has that but we also suffer - our hormones are all over the place, I have Pcos so my insulin levels ARE also not great so maybe if someone did have a look at the Endo/ado/Pcos, I might stand a chance?

All we can do is look after ourselves as best as we can - when we are not too tired/nauseous to keep up the vitamins/exercise that we know helps in the long run.

I'm glad you have hubby to support u - it makes a big difference to have someone who cares.

I try to keep a sense of humour about it all ( I am singing Hi ho it's off to work we go as I type) but it is wearing pretty thin.

The only positive about all this is I have learnt that if something can't get done, no big deal. I learnt how to be calm, not to rush (no choice really lol) and enjoy each day as it comes. Stress and tension will only make the pain worse anyway.......

You sound like you still have a lot of fight left in you. I hope work treats you well and you are getting the well deserved benefits from being out there and living as normal as can be.

If only there were jobs where you could turn up only when you felt able to work at your best.

Keep strong, keep going and stay happy.

Kim xxx

[Ppdotter]

Hi Kim

Another migraine today. :-(. Was booked to see a friend and had to cancel. Rang her up to explain and burst into tears. Endo pain also been bad all week. I know I have to deal with all but cannot bring myself to book another lap as I have anxiety and get very stressed. Trouble is I am sure the endo is causing migs as hormones blah blah. Sorry i feel low today and sorry for myself. How are you doing? How adeno affect you ? Are symptoms same as endo? I too have pcos for my sins lol

Sending you healing hugs xx