New to the forum

Hi all,

I'm 29 and I've not been officially diagnosed yet, but I've been having pain every month for the last year. As I'm sure you all know; it's excruciating! I also get really bad leg and back pain with it.

I had a scan recently (which showed pockets of blood in my uterus) I'm now just waiting for my gynae referral to come through and hopefully have a laparoscopy.

My question really is: how to cope at night with the pain? I usually wake up at 3am and can never get back to sleep properly. Zapain is starting to not be as effective and it makes me spaced out :(

12 Replies

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  • Hi there,

    I am using an i phone ap called

    'Be Calm' it's a meditation and really helps to block out the pain. The drugs make me feel terrible and i have changed my diet and do gentle exercise every day which has all helped. Hope that it helps :-)

  • Really interesting bingobongo. What is the exact name of the app? Just looked up in the app store and there are a few with similar names. Was going to go for 'be calm now'.

    Closingwinter,

    I know what you mean about night time pain. bingobongo's ideas are good supportive things you can do to help. I also eat a very healthy diet and I'm starting yoga today which I hear is good for pain. I also get acupuncture which helps.

    The yoga course I'm doing is online and specifically designed by 2 women with endo for women with endo. It costs £36 until March 30th when it doubles in price. yoga4endometriosis.com

    I have no connection with this product. I just really like Melissa's (one of the yoga women) website cureendometriosis.com where you might find other things that could help you.

  • Hi Brownlow and closingwinter. It's called 'Be calm' and in a purple swirl icon. It's brilliant. I couldn't sleep last night after my lap yesterday and was in alot of pain. In my opinion it works on your subconscious so i think would help even if one finds it hard to visualise.

    Going to try the endo yoga. Thankyou, feels lovely to have support :-)

  • I downloaded it....but didn't like her voice because I'm a fusspot! I'll give it another go.

    I also find the Barefoot Doctor really good barefootdoctorglobal.com Over the years his books and website have helped me gain mental strength. I also think he's very funny because he doesn't take things too seriously.

    I use his Tai Chi dvd for gentle excercise and to calm my mind.

    amazon.co.uk/Barefoot-Docto...

    Wishing you a speedy recovery after your lap. Hope you have lots of nice food and some good dvds to help you through. Take care. x

  • Thanks Brownlow. That's a really lovely message. Watching son of lassie which is making me cry- those anaesthetics really mess with my.emotions! X

  • I might try the app, but I'm not great with visualisation etc so it may not be the best option for me.

    I've been looking in to Yoga, but I'm just about to move (3 weeks) so I'm going to leave it until then. I shall check out the yoga for endometriosis, thank you :)

  • Don't forget the good old hotwater bottle too. not directly on the skin mindyou, just place it over the clothes or wrap it in a towel so you don't cook the capilliaries near the skin surface.

    If you find that being more upright helps with pain then relocate to sleep on the sofa sat upright leaning to the side .

    If you have pockets of blood in the uterus - it could actually be a sign not of endo but of adenomyosis. Very similar disease - but adeno only grows in the muscle wall of the uterus and when it bleeds the blood gets trapped there unble to escape down the vagina.

    adenomyosisadviceassociatio...

    this will not show up in lap op s it is hidden from view inside the uterus wall.

    Endo grows on surfaces of tissue andon anything it likes to grow on..it is a much wider scale disease but is easier to see in the lap op.

    Adeno can be hinted at in a lap if the outside surface of the uterus appears lumpy bumpy in places where it shouldn't be like that.

    Read the website at any rate - because it is worth knowing about adeno as a possible cause and there is excellent advise on planning for surgery on that website too.

  • Wow, well that certainly fits in with a lot of my symptoms too! Thank you :)

    I used to sleep on the sofa with a hot water bottle but it was too uncomfortable :(

  • My GP has just prescribed me amitriptyline to be taken at night.

    I haven't tried it yet!

  • Let me know how you get on with it!

  • Closingwinter,

    I forgot to mention some of the non-drug things people here recommend for pain. I've just ordered a TENS machine. Some people use disposable heat pads that you can buy in places like Poundland or Savers.

    Someone else recommended a heat pad that you wrap around you and plug in to charge. I can't find the post now but it seemed quite a good one if a bit expensive at about £50.

    These aids are all about heat but I read somewhere yesterday that some women find that ice packs work better! If you try this make sure you don't let any ice touch your skin. Put in a plastic bag and wrap in a teatowel or something.

    I'm just going off to get a hot water bottle now as I await delivery of the TENS machine.

    Hope some of these things might help you and at the very least take the edge off your pain. X

  • I definitely better with heat than cold! I like the idea of the TENS machine! I may have to investigate.

    On another note, work have told me I can't be there at the moment. I kept going in, doing half my shift and going home. They'd rather I stayed off and felt better than struggle.

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