BSGE Question and Insomnia

Hi.

I have been trying to look on BSGE website, and it just constantly says

"No Records Found. Sorry, no record were found. Please adjust your search criteria and try again."

And the same when I try search places nearby to me....can anyone shed any light?

Also, has anyone else developed insomnia amongst other things? I'm stuck awake until about 4-5am...every single night, sometimes with just the pain to focus on, but I never used to have such issues with sleeping, and its so unbelievably frustrating on top of everything else.

X

20 Replies

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  • I can totally relate before everything got bad last year I would sleep like a log, my mom said I never moved or anything and even if there was a loud bang and she'd go to check on me I'd sleep through it.

    Within the past year I've had issues sleeping, anything from waking up from pain literally screaming in pain, waking up because I just did, not being able to sleep from pain. Having issues where my legs are because curling up is how I sleep but it tenses my pelvic floor causing spasms. Sometimes it's chills, hot flashes, cold sweats, feeling just uncomfortable or I keep having to do to the washrtom (especially on my periods) Then there's days when all I can do is think and sleep just doesn't happen.

    I find doing yoga before bed and working on breathing helps a bit also soaking my feet in essential oils.

    Sometime hormones are to blame. With them it's either what hormonal treatment your on or if your hormones are bouncing up and down naturally. You can soak your feet in evening primrose and rose gernanuim for that. Lavender essential oil is good for sleep, you could diffuse some.

  • Thank you!

    I'll look into them :) I know it's horrible, most of my pain is on my right side, I can't even lay on that side now, and if I do, it'll wake me up :(

    I'd had yoga suggested to me, but I didn't know I'd be with doing that, as even walking hurts, so I thought maybe doing that might?

    Thank you for your reply x

  • Do some really light yoga and hold the poses, the only way you'll get bette is through pacing sadly. In october I could barely move now I've gotten back into dance a bit.

  • I have terrible insomnia now, between the pain and the stress of the disease. Epsom salt foot soaks before bed help. I'm doing one now. Just know that if you overdo them it's a laxative.

  • Where in uk are you?

  • I'm in Durham currently, and at least for the next 18 months x

  • Hi Mia your nearest ones are at Newcastle upon Tyne and [edited to comply with our code of conduct] Middlesbrough. I wish I could help with the insomnia but I suffer with it too. It has got worse since surgical menopause.

  • I didn't know there was one in Newcastle, thank you very much!

    I'm sorry for you too, its so horrible, every single night just lying awake :( x

  • Yeah I know, I do have periods when I sleep like a baby but then all of a sudden don't sleep at all. When it's like that it just makes it harder to cope with the endo pain and working full time. There are nights when I just wish it would all end, but nothing lasts forever and us endo sisters are so much stronger than we think we are. Well get through it .alaways here if you want to talk.

  • Thank you :)

    I'm still needing to find out what I have, I do feel 90% sure I have endo, but just one op so far found nothing. I've found the details for the nearest BSGE to me, I'm going to try call them tomorrow.

    I have an appointment with a different hospital next week, would you recommend me asking for another lap? Different gyno?

    My pain has got even worse than it was before in the last 3 weeks, and over the weekend and today I'm getting seriously fed up with it. Like fed up to the point of thinking "is this actually what the rest of my life is going to be like!?" If so - that's not really a life is it? Every single day in bloody pain? :( xx

  • Yeah I know what you mean. Yes you need another lap but with a BSGE centre. No point going to a general gyne. I think if you want to and can afford to you can see them privately for first consultation then transfer over to their NHS list for surgery. Costs around £250. Just wish I could afford to do that as I'm trying to get a second opinion as original surgeon left disease behind after hysterectomy and says there is nothing more he can do, and that I need to learn to live with it. I'm worse now than I was before. Actually said to him , well if this is my life now then I don't want it.

    If they had to live in pain everyday then something would be done.

    It's not right and it's not a life.

    You will get answers and help, but it takes time and lots of patience.

    Just don't give up. If you ever feel like that Hun pm me . I will always be here to listen and try and help. You're not alone in this and never will be.

  • That's the sort of thing I said to my friend, and he said "well it will get fixed and get better" but having read so many people's posts, and how I have been for months, it doesn't actually seem like it does...and reading about how people have had to take antidepressants I don't know if that's how I'm becoming now, but I really hope I'm not as well.

    And exactly its not a life - I can't do a single piece of uni work because I'm always in pain. The other day I managed to walk to the bus stop and then had to turn around and come home, and I've only got about 3 months left of entitled sick pay, and before they won't be entitled to take me back - and then that adds more worry, because I was woking as a waitress I got to a point where I couldn't stand for 5 hours and carry plates :/

    I'm seeing my doctor on Thursday, can I ask them to refer me to a BSGE? And that's the cost for a private lap?

    Thanks for your message xx

  • Yeah GP can refer you. Don't take no for an answer though. Some GPS can be awkward. It is your right under NHS guidelines to choose where you go.

    The £250 is the rough cost of initial consultation.

    Let me know how you get on on Thursday.

  • I will, thank you :) x

  • Hi Mia

    I found the website did that too, so in the end I just scrolled through the pages and looked at each one to find the nearest. If I put in my county it said it and it also said it when I put in my town too.

    I try Bach Rescue Remedy Night time sometimes to help when I have insomnia, it's herbal and it seems to work and doesn't give you a groggy feeling the day after like some herbal sleeping tablets do with me.

    I hope you get a restful night soon and good luck with the BGSE hunt xxx

  • Thank you very much, I'll give those a go as well :) x

  • The website does say that a lot but if you get to the map and click on a pin near you or where you want to go then the information on that centre is given below, you probably need to scroll down to see it, as where the map was now say no records found.

    I suffer badly with insomnia and link it to my depression which can be linked to endo too. Various anti depressants help you sleep and some help with pain too. I didn't get on with amitriptyline as I felt so tired the next day but others say it works. I'm on duloxetine which helps pain and sleep a bit so it maybe worth trying something to help. All else fails get gp to give you some sleeping tablets - I have zopiclone that I take about once or twice a month when I've just not slept for several nights.

    Good luck

    bsge.org.uk/centre/

  • I'm really angry with my doctors to be honest!

    They prescribed me temazepan and it was like a god send, I'd take them and be asleep half an hour later.

    I was getting prescribed them for 2 maybe 3 months, and then new doctor saw I was getting them a lot, said they were very addictive and said he wasn't prescribing me anymore "sorry you'll just have to have some sleepless nights" felt like I could cry! And then my usual doctor agreed with him.

    I've been on painkillers so long they aren't even helping with the pain now, those sleeping tablets were like a lifeline almost for me, the only thing that was working for me and they just stopped them really abruptly :(

    Thanks for your advice as well x

  • Sorry to hear that. Maybe try asking again now you've been off them a while and had so many sleeess nights. Good luck.

  • I found that amitriptyline was a massive help when I started having severe headaches and resulting massive insomnia, caused by constant menopausal night /flushes/sweats.

    My GP prescribed the 10mg tablets, but told me I could break them up into halves, quarters or even powder and take as little as necessary. I found I was very groggy if I took a whole tablet, but a 1/3 or less was fine. I still take it occasionally, as although I'm (supposedly) post-menopause, now, I still have bouts of night flushes/sweats.

    Amitrip was originally developed/prescribed as an antidepressant (so always tell travel insurance why it has been prescribed, or they will assume depression, I guess). The doses for depression began at 40mg, I believe, then went up and up - which I find incredible!! However, it is rarely prescribed as an antidepressant, now, but is used increasingly for insomnia, headaches/migraine, fibromyalgia and other aches and pains (it helped when I had costochondritis) . It is not addictive, so I would talk to your GP about it.

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