Feeling hopeless tonight...

[Mistiek]

I have so much running through my head and I'm feeling so alone tonight...

I was booked for depression because off all this crap with endo and my work being stressful... I had one more week off to go and found out that I was being reduced to half pay as apparently I had used all my sick Leave. I decided to return to work and have been on lighter duties ever since. I managed to get a quick lap date which is on Monday and I'm thrilled that it's moving quickly but have had to use annual Leave to have this as I can't afford half pay. I found out this week that my sickness resets in November... I initially I was happy as I have been told I have adenomyosis and will likely need a hysterectomy after the diagnostic lap...

I later found out I have to accrue this leave so I can not have my hesterecromy until I have accrued enough.... This will take me ages! My partner is not very forthcoming either and just keeps saying well if you can't you can't.... would prefer if he said if it gets offered soon go for it we will make a plan!

I'm so tired of all the pain! The illness the tiredness etc and just want my life back and feel I'm getting there with all the treatment planned.... but because of work I may not be able to... I'm so disheartened.

If I get offered a hysterectomy this side of Christmas and I turn it down, will I have to restart the whole referral process again?

I don't know what to do or where to turn... I know if im offered the op and sooner rather than later and work don't make a plan for me I'm financially unable to afford it... but physically and mentally I'm not sure I can wait!

Just want to cry all the time.... no one seems to care

[givemeananswer]

Ugh, I just wrote a huge reply and hit a wrong button and lost it all! I was in your shoes in 1997, had two small kids and we had no money. I had just made management two years prior then a new owner came in and my health went to crap.I was 33 but they didn't diagnose adenomyosis until 2003 after 3 prior laps. Stress and endometriosis are a lethal combination. We have to be thankful for we we do have as scary as it seems. My hubby has stuck it out even though 17 years later I am still suffering and he has had to be away most of the time being the sole income provider.I am thankful for him. You sound young, I am sorry for not having a better more promising outlook of a story for you.But I hope things go better for you. You are not alone, thanks for sharing and making me feel less alone as I am here at home alone reading your story.

[Mistiek in reply to givemeananswer]

Hi givemeananswer, thank you for your reply...

I'm sorry you are on your own... that must be tough. Yes I am young ish. I'm 36 now have 2 of my own children And my partner has 2 of his own.

I was married for 10 years but it took me all this time to get diagnosed and it caused a lot of problems in my marriage. I have a new partner now and we have been together for just over a year. We moved in together in Feb and my problems started soon after... its been such a roller coaster ride for him and I'm surprised he is still here... He is very supportive and very caring and looks after me very well...

We both have good no job, he is in the police force and I'm a nurse. We have a lovely home and a lovely life... but we live within our means. We split everything in half and neither of is are flush. So if I lose half my pay we both suffer. So I know it's hard for him to say it will be ok and we will make a plan.... but... I'm the one going through the pain and have had to wait so long to get this far.

My step mum was saying I need to find a way to do this as I have waited to long and this illness is affecting my life too much... she says if I wait I will crack and she is right. It has ruined so much of my life so far...

Now my work is suffering... I have only been a nurse for 2 years! I studied hard to get this job... I have an amazing man and an awesome life... hut I can't do anything like is used to... have not gone hiking and walking in ages, not done any photography. Moody, sore and depressed. I feel like I'm loosing everything...

I need this op and if it's offered I need a way to sort it out so I can have it and not financially suffer !

Argh... just have not figured out how yet. ..

[Chaosa in reply to Mistiek]

I also have to decide whether to have another (endo) surgery done and money is the only factor that makes me hesitant. I think I will go through with it just to give me a chance at normal life, I hope that if I am better I might be able to make better financial contributions in the future.

I hope that you are offered your surgery at the optimal time for you.

Can you start trying to put money away now for whenever you come up on the list? Having a dedicated bank savings account and putting in savings from small daily sacrifices (like skipping a coffee) might show your partner how important this is to you and make you feel less guilty about putting a strain on your finances.

(I know I feel guilty and the whole situation is upsetting but I figure health is not something to skimp on and stress isn't something that we should indulge ourselves in if we can possibly help it.)