Stage 4 Endometriosis & really struggling, please can anyone help?!

I am a 26 years old female on the edge.

I had all the usual symptoms when I was younger, heavy, painful, irregular periods, couldn't use tampons when I was younger, and started my periods at 11. I was at the doctors every week until they decided to investigate. I had a laparoscopy in 2010, they found endo everywhere, bowels, bladder, and the usual female places. Unknown the anyone they perforated my bowel during the op and sent me on my merry way with the devastating diagnosis. I took peace in knowing that there was a reason I was in so much pain and I could try and do something about it. 5 days later and getting no better after the op my mum decided enough was enough and rang an ambulance. They came, pumped me with morphine and took me to hospital, I had an emergency laparotomy which thankfully saved my life. It lasted 8 hours in which they found 2 15cm square cysts, I had septicaemia but I was alive. My left tube and ovary are useless and my right side is damaged. I've been told to have a baby but I'm infertile, I will need IVF but my partner isn't ready yet. It's been 4 years since the operations we've had our ups and downs because of it but still together thankfully. Present day I am really struggling with the endo, it's horrendous. I have a 5 week cycle, the first week after period isn't too bad but then the pain starts, almost passing out with bowel pain, period pain on a high which radiates down my legs. Horrendous back pain etc... I feel awful, fatigued, emotional and just in constant pain. I get a week break out of every 5. I almost went to hospital to demand a hysterectomy last week I had just had ENOUGH. Is there something I'm missing... Does someone have something magical to help me... Please...

Thank you in advance if you reply, I really appreciate it!

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1 Reply

  • Oh bless ya hun you have been through the mill! I wish I had a magic wand then I would make this horrible disease disappear! Maybe though I would also put the pains etc we feel onto those who have ignored us and brushed it off just so they see what it is like! mwahahaha!

    I bet you have constantly been to the drs for stronger pain killers etc. Has the contraceptive pill been tried and help to you? I was on Loestrine which helped a little. Some say the coil can help but also for others it doesn't. Sorry to hear IVF will be your only option. I know how you feel there. You can't go on having these 5 week spells with 1 week that is relatively any good. Keep pestering your gp/gynae until they do something..even if it experimenting with different tablets etc.

    I have been going to a fab hypnotherapist/counsellor who has tried to help me deal better with the pains, symptoms, effects on everyday life. It has by no means cured me, but I think it has helped me a little cope mentally better, but I am also on anti-depressants so that has probably helped too. Again it doesn't make everything wonderful and light, I still have plenty of absolutely crappy days where I am doubled in pain, fatigued, bowel problems, in tears. It has also given me someone neutral to offload on. My husband is great support but I fel like I am burdening him and don't want him getting worried and upset about how much pain and how low I am feeling and how it is a struggle..although he is getting better at reading through my "I'm fine" face!

    I'm sorry I cannot be of much help, but I wanted to reply to thank you for sharing your story, responding to your post so you know that you are not alone and this site is a great place to rant and offload. I hope you are having as much as a good day as possible xx

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