Fighting the fatigue

[karenjack1000]

Hi there, I have stage 4 endo, a tumour on my left ovary and I’m currently on the list to have an oophorectomy. In the meantime I have been having decapeptyl injections with addback hrt. Im guessing the backlog for ops due to covid is going to be at least a year. I have other conditions too, ibs, anxiety, depression, gerd; which throw a lot of difficult symptoms my way. I’m struggling with extreme fatigue and wondering if anyone else has this and how you cope? I feel frustrated that I am no longer the active person I used to be and have major guilt that I can’t be the mum and partner I want to be. Does anyone else feel guilt like this?

[Daisy2212]

I’ve just recently turned 17 and am suffering with really bad endo to the point where I have to go to hospital every month due to not being able to move or help myself to the toilet, I have misssed out on a lot of stuff teenagers do but I always try to think although it may be unfair on us and effect our lives and relationships we have to do what’s best for us, sadly we didn’t choose it or want it but we have it and Im not to your extent but I’m not active like I used to be and can’t be the funny friend I once was but I know I have to look after myself first and try my best to hold on through the tough times, best of wishes for your tumour and endo all my fingers are crossed for you

[karenjack1000 in reply to Daisy2212]

Hi Daisy2212,

Thanks for replying. I sympathise with your situation and you sound determined to do your best to get through it. I hope you have a lot of support round you from family etc. Thanks for reminding me that we have to do what’s best for ourselves ☺️ I tend to forget that and struggle to keep up with what I think others expect of me which gets me frustrated and down. I hope things get better for you too 🤞

[AllthatGlitters]

Hi Karen sorry you are going through this, I have fibromyalgia as well as IBS, endometriosis and adenomyosis. It’s so tiring, the fatigue is unreal. I am also on the 2nd decepeptyl injection (without HRT as still waiting for it but sure this is making me even more tired). I also feel I am not the person I want to be, however if I have those negative thoughts they aren’t good so I try to tell myself I am who I am now, things have changed in my life however I try to focus on the things I can do, instead of the things I can’t. You are no less of a person because you have illnesses, we are just unfortunate to have to suffer daily because of it. Sending a hug, feel free to PM if you like x

[karenjack1000 in reply to AllthatGlitters]

Hi AllthatGlitters,

Sorry to hear you have all that going on. Thanks, I will try to stay positive and focus on the things I can do, that’s good advice ☺️ Hugs x

[635703]

Yes, I do feel very similar.

On zolodex injections with add back HRT tablets and extremely exhausted. Had Mirena out this morning and in bed with headache. On list for hysterectomy and told it will be 9-12 months wait.

Recently admitted to hospital via ambulance with vaginal pain and bleeding. Unless you’re dying, they fob you off as best they can. I left hospital with no pain relief ☹️☹️☹️

Was told cancer patients first and I would be next. So now, Gynecologist told me there was someone who bled so heavily they needed a blood transfusion and had been waiting a year. So that was helpful hey?!

So I will not be expedited up the list. I have asked but now it seems declined. I am unsure. 😱☹️😱☹️😱☹️😱☹️😱☹️😱☹️

Was in agony and almost screaming on examination - ugh 🤦🏻‍♀️

It’s such a bloody mess. This NHS and creates a two tier system for sure. Those who are able, crack and go private and the benefit of money is to be used. So I respect this choice wholeheartedly.

Really really feel very rough right now. Hope this goes away quickly.

[karenjack1000 in reply to 635703]

Hey, yeah I’ve been waiting so long for my operation that my decapeptyl injections are now being prescribed off book. It’s going to take a lot of patience to wait for NHS but my I do like my gynaecologist. she has operated on me twice now so I trust her. At the moment it is painkillers and hormones until the op. Will your doctor not prescribe you painkillers to help with the pain? Hope it eases up for you x

[635703 in reply to karenjack1000]

Well I went it via A&E in an ambulance and they didn’t prescribe me any pain meds to go home with. I got them from my GP. Gynecologist makes me uneasy and getting a second opinion from an Endo Specialist. How specialist I am yet to find out. Give me strength 🙄

Had Mirena out and got a throbbing headache and feel like I could puke. Didn’t sleep well because of today and can’t nap.

Amitriptalyne tonight though! That’s for trigeminal neuropathic pain though 🙄 Wonder if it helps the other kind of pain 😱😬

Nobody has said yes or no when I have asked this question.

Another customer in the Chemists was abusive to the staff and I spoke up for the staff. Told him he was being rude and unkind and to stop ✋

Honestly, today was challenging and so glad it’s almost over now!!

[karenjack1000 in reply to 635703]

You’ve got a lot going on, hope you get a good sleep tonight and the meds help. I don’t sleep well most nights which doesn’t help the daily fatigue. I’m sure the amitriptalyne will help you sleep but not sure either if it helps the pain x

[635703 in reply to karenjack1000]

I just spoke to Amy on the helpline. She was so lovely and really very helpful. I felt heard and supported.

We women are each so special and unique. I just love how strong we are, how sensitive and how we pull together.

This has been a supportive space, so glad I found it and thank you for your encouragement and support too!

Much calmer now and the headache has gone....getting ready to relax before sleeping 😴 x x x x x

[karenjack1000 in reply to 635703]

That’s good to hear. I didn’t know there was a helpline. And I agree, we women are strong and unique 🙌. Enjoy your sleep x