nervous to share

hi I'm Jacqueline ive recently give birth to my only baby at 25. he's 4 months now but I was told id never ever have babies as I've got pcos too. I've had about 6-7 operations on my endo ive suffered from being 17 years old.

the pain is crippling and makes life so stressful. after my baby everything has got worst I struggled with the pain through out pregnancy but thank fully had a fast easy labour of 45mins with no pain relief as I honestly believe my day to day pain is worst.

baby was born happy healthy with no complications my most precious miracle

I've now found out that not only is it back with a vengeance its spread onto my kidneys which is scary as hell. and also making life very hard having a demanding new born this horrid disease pcos 0 sleep and no help apart from when his daddy is home from working 12 hours I just wanna ask is there any thing anyone thinks might help other than drugs as I'm needed to be alert 24 a hours for my non sleeper and has anyone ever heard of it on kidneys before???

thank you in advance xxx

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  • Metformin. You can get it for pcos if you're affected by that side of it

    Congratulations on your little girl. x

  • Hi lovely, it sounds as if you're having a horrible time of it. A lot of people get relief from a tens machine have you tried that? I believe there are other types of drug free pain relief patches too, but hopefully someone who uses them will come on here and recommend.

    A friend was advised to use an infra red pain relief device that's very small and fits in your hand when she broke her pelvis. She gave it to me to try for my endo, but it didn't work for me, it actually made it temporarily worse. It may work for you though, but it might be worth seeing if you could borrow one (maybe from your GP - it's worth asking) first, rather than spending money on it and deciding that its not good. It might be worth a try.

    I've just had another round of endo surgery and although it wasn't on my kidneys (they thought it would be be because they already knew that my bladder was badly damaged and I had constant kidney infections) it was on my liver.

    All I would say is that if they'd told me that my liver was affected before the operation I would have been really really alarmed as I imagine you are now that you know it's on your kidneys. They managed to get rid of the endo from my liver and other organs and also detach my liver from my diaphragm (they'd glued together) and it hasn't left any lasting damage. Actually (given that I had 5 organs operated on) I'm feeling much better already after 3 weeks because even though the op was lousy and I'm still hurting from it, the pain before was constant and horrific and I'd had it for 20 years before being diagnosed - I can't really remember not having pain, you just kind of get used to it and get on with everything don't you?!

    It is alarming when you realise that an organ is involved, but try not to worry too much. We know that stress makes the pain worse and you must have a lot of stress with a young baby and so much pain already. If you've got a good BSGE specialist team working with you, they'll look after you and help you no end. They usually have a specialist nurse who could help you with finding a way to manage the pain while having to remain completely alert - as you do. Are you under a BSGE specialist endo centre? I suspect you are, but if not, then you really need to ask to be referred to one asap. Not only will they carry out more successful surgery, but certainly at our nearest one, the specialist nurse is on the other end of the phone if you need her for advice and it sounds as if you need a friendly helpful voice just now.

    I really hope you get on top of the pain soon, so that you can feel better and really enjoy this time with your baby. Very best Molly x

  • Dear of you congrats on your baby! I'm Waiting for lap and I'm in so much pain I think it's on

    My kidneys as I've all got kidney infections my pelvis pain and kidney pain is crippling 😔 I know how you feel there will be light at the end of the tunnel and we get some answers 😀 I've used a tens machine it will help'! Can you describe ur kidney pain and how you feel to me x

  • I'm so sorry to hear of your pain. I can't offer any solution but only let you know I feel your pain and know what you are going through. I have been so much worse since giving birth, I think the lack of sleep doesn't help.

    I think mine has spread also.

    I agree that the day to day pain we suffer is so much worse than labour.

    Sorry I can't help, but sending happy hugs your way x

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