Struggling with stage 4 endo

I got diagnosed with stage 4 endometriosis 2 years ago after a laparoscopy, since then have been very up and down with symptoms. However this week have reached all time worst period ever- passed out at work from the pain and had to be driven home. I know I had a cyst last month as had to stop the beginning of my IVF cycle due to the size of the cyst. Have been completely wiped out since the weekend, and never been through so many always 8 hr night time pads!! The pain has been horrendous. My GP has put me on mefemic acid and Zappain to help control the symptoms. I have a scan next week to see if cyst has burst or what it is doing. Today have slept and feel so tired and fed up, as a teacher I hate having time off work at such a busy time of year and just feel lousy - flow is slowing, but hip, back and leg pain is not great, seem to have developed upset stomach today and just want to sleep and feel very lather fix. Any hints and tips for dealing with fatigue or recovering from rough monthly would be greatly appreciated- have been drinking lots of water and tried to eat little an often as had no real appetite and hot water bottle is definitely my current best friend! Fingers crossed scan shows good news and next month is brighter! Apologise for the moan- just needed to get it all out! X

3 Replies

  • What did they do about your endo 2 years ago - were you dealt with in a specialist endo centre and did you have it all excised at the time? If not the the NHS contract requires that you are seen in a specialist centre with stage 4. Have a look at my posts on rectovaginal endo, endo on the uterosacral ligaments, the treatment pathway and how to find a centre. x

  • I kept getting cystrs when going through ivf and I found following the endo diet and ensuring I had good levels of Magnesium and Zinc helped. Bananas, almonds, Brazil nuts, taking my B Vits with a high amount of B12 also helped. I used a programme called foresight, its a charity and they test yr levels of Vits and minerals and am sure that's why our 3rd ivf worked. Good luck

  • I'm a teacher too and I always have a heat pad type waterbottle thing so I can place it in the microwave and place it on my tummy whilst at work. I take naps (when I get home) to help me with the fatigue as well as eat nuts and seeds. I now drink herbal tea as I find that helps esp the lemon and ginger one as it helps with the nausea I get. I also have sage and lemon thyme or something like that which has helped. Low GI has been great too so I don't have the highs then lows. I also have paracetamol with codiene, which I don't take at work but in the evenings it really helps, which is when I get the pain at its worst. I also take eveing primrose oil. I hope it all settles for you x

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