Please help : I feel really shit - just... - Endometriosis UK

Endometriosis UK

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Please help

rossemma1
rossemma1

I feel really shit - just been really sick

My pains are terrible and I’m struggling to sleep.

My legs are killing me

Any advice

16 Replies
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Hi Emma, I will send you a private message. x

Bless you hunny I hope you are OK... I feel awful too tonight and cannot sleep 😔 I'm sending you all the best wishes, I get like a restless feeling in my legs that hurts so much and keeps me up too

rossemma1
rossemma1 in reply to Ellenlar

Thanks for the reply - I just feel so lonely as my partner asleep as he had to get up at 6am..I usually go to hospital but I’m getting lost at knowing what to say each time

Ellenlar
Ellenlar in reply to rossemma1

Aw I completely understand 😔 it's so hard when you have to keep explaining thing to people and many don't understand or know what endo is! I'm so sorry your having a rough night though, as lonely as it may feel none of us are really alone we have a incredible support system of women online who just understand and know what it's like, I'm very lonely too 😔 I don't have anyone in my personal life I can talk to, I've recently joined this group and follow alot of strong amazing women who understand online and it really help, you will be okay and you will get through this😊

rossemma1
rossemma1 in reply to Ellenlar

Thank you that’s so kind. Are you diagnosed yet? I was diagnosed in September through laparoscopy.. not currently working which is probably best but I’m 7 weeks post op and still no better!!

What time do you stay awake until?

What do you think the best thing to do is

Ellenlar
Ellenlar in reply to rossemma1

I'm undiagnosed 😩 I have suspected endo effecting my bowel and bladder on top of other endo pain 😩 I have a amazing endo team and got rushed to preop but then covid hit and my local hospital stopped the surgeries 😔 I missed 80% of my uni time from pain and I can barely walk atm so had to gap year, but iv come up with constant kidney issues now to. And that's amazing you have gotten your diagnosis, I'm not sure what to suggest really it's what ever you feel is best to do, have you gotten a head pad and any pain killers? Maybe if your able to, make a nice cup of relaxing herbal tea, I hope your okay... Ans I have insomnia so I sometimes crash with fatigue but also can't ever sleep, I hope your okay x

rossemma1
rossemma1 in reply to Ellenlar

Where are you from?I’ve taken tramadol - dicoafinic and just had some oral morph.

Have you been to A&E before if so what do you normally say

Ellenlar
Ellenlar in reply to rossemma1

Hopefully those kick in soon! And I have many times but not since I was told its suspected sugnificant endo, but before I've explained my pain and they just give me codeine and tell me to leave after a examination and blood tests (but they presumed I was imaging it because I'm autistic so mt situation is super different, as is everyones,) I do call 111 though, But also everyonea situation is different and if you if you need to go and get more help then maybe u should but I can't say because I don't know your situation, I think try not to panic and wait for the medications to hopefully work soon then see how you feel, you will be okay hunny you, just stay strong and you will get through this!! Sending you all the positive good vibes

rossemma1
rossemma1 in reply to Ellenlar

Thank you x, at the moment I feel like I’m dying.. I go to A&E fairly regularly and I suffer from mental health but most of the staff know me and treat me well but when I see Gyne a couple of weeks ago she said there’s noting more I can do for you - you’ve got chronic pelvic pain, don’t want you taking all your meds you’ve had your lap so you don’t have endo anymore!!! I was like how rude and upsetting

Got a review with my consultant in 3 weeks

Ellenlar
Ellenlar in reply to rossemma1

It's amazing your local a and e are so lovely mine are over too overwhelmed I get overlooked 😩 aww bless you honestly that's so rude I am sorry she said that to you there's no need for rude people 😔😔😔 I hope your okay hun, I can imagine it's so upsetting and stressful when staff don't listen 😔

rossemma1
rossemma1 in reply to Ellenlar

Still laying here dying - wising it could be morning so I could go to hospital

Ellenlar
Ellenlar in reply to rossemma1

Bless you hunny I wish I could help 😔 sending all he good vibes and best wishes I hope you feel better tomorrow x

roshsp2012
roshsp2012 in reply to rossemma1

Hey, so sorry you're going through this! Was it a general gynaecologist that completed the operation or a endo specialist at a BSGE centre? If the former, I would insist they refer you to an endometriosis specialist as they could have missed endo. Be strong and don't take no for an answer, even if you have to get PALS involved. Its ridiculous for her to say you don't have endometriosis anymore, she could have missed some. Its a chronic condition, the op hasn't cured you. Might be worth asking your GP to refer you to a local pain management service. They may be more helpful.

I have a few natural things that might help. Send me a private message if you want the info xx

Are you on Dienogest? I was in the same boat as you and this drug really helped post op to get my life back. Originally only available overseas but now made here called Zalkya. This is the only pill I found works at controlling periods and therefore the pain vomiting and diarrhoea. Just ask you gynae or nurse to try, it’s cheap / free and no side effects xx let me know Hun..

Hope your pain has eased off today x

Google LIVIA device. It’s like a TENS machine and depending on my level of pain, can offer a lot of comfort, especially with a large heat pad laid on top. You can also walk round with it on. I haven’t found any painkiller that touches my pain and doesn’t have scary side effects. Nina

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