Anyone else who can't sleep?

[ragingchocoholic]

Fancy a chat?

I hope you aren't in pain now.
I've got a good book on the go so I am leaving my phone downstairs and will read if I can't sleep...wish me luck!

Sweet dreams all and no earworms....

Good luck floral!!

And let us know what you are reading

@wobblebot what are they doing about your endo? It’s not acceptable to be in constant pain and just given opioids.

Good luck 🤞

@Zofloramummy I'm waiting on my second laparoscopy..

I moved house a few months ago and so I had to get re-referred which made everything take so much longer. Luckily the gp referred me to the private hospital (nhs clinic) which has a waiting list of a few months because the nhs hospital has a waiting list of 9-10 months!

I'm not working, either in pain and withdrawing from the painkillers with nasty side effects of numb to everything emotionally and physically. It's a disaster it really is. My marriage is falling apart and my DS is struggling to understand and so is now a very angry and confused child.

It's such a mess 😪

Oh god wobble! Are they going to do the burning thing? I had a colleague who had that surgery. Prior to that she was fainting regularly and off loads as she was so ill. She ended up with a full hysterectomy about a year later.
How old is your ds?

Yeah, that's what I had before too. I'm so scared of needing a hysterectomy because they with have to remove my ovaries too.

I've discussed trying a chemical menopause to see whether it helps (if it doesn't a hysterectomy wouldn't either) but I feel too young to go through all of that.

DS is 8. He's intelligent and articulate but emotionally quite young and vulnerable. He's been through a lot in his short life and on top of everything his dad (my ex) is an arsehole.

I’m 43 and have started bleeding between periods. My mum and my auntie both had hysterectomies in their early forties.

Your situation is just Pants. No wonder you aren’t sleeping! Is your ex still living with you or elsewhere?

Hi...
Sorry to jump on the thread.
I have endo too and pcos....
Im 35 and only having symptoms the last few months...

I found out i had endo on hospital discharge notes, that was found in a scan that i was having for something else, so havent actually spoken to a doctor yet but it explains alot.

What are your symptoms of you don't mind me asking....

Hope you get some sleep :)

No DS dad and I split up about 7 years ago. My DH and I live together.

Thanks for the acknowledgement though. I t really helps me to understand that I'm not going crazy!

Well my symptoms are extreme pelvic pain. I don't have any bleeding as I don't have periods due to having a coil. I have an investigative lap initially and they excised what they found but unfortunately the pain returned within 6-9 months (that was a year ago). It would come and go but I've been progressively getting worse consistently for over 4 months now.
When o say extreme pain it is crippling. I cannot stand up straight, it feels that tight. It also feels like I'm repeatedly being shanked in my ovaries and stamped on. The pain radiates down my legs and into my back daily often too.

I know that I have pain on the higher end of the spectrum but I wouldn't wish anybody to have to go through half of what I do.
I am usually active, happy, ready to go but it turns me into a crazy psycho bitch that's excessively emotional and reclusive.

Does a coil exacerbate the symptoms? I don’t have endo so I’m pretty clueless. I should imagine this is affecting every aspect of your life. Is your DH supportive? Ultimately even if you do have to have a full hysterectomy at least you would be regaining a quality of life. I’ve always found that opioid meds don’t actually reduce pain they just disconnect you from the world enough to allow you to exist with the pain iyswim.

Are there any hormonal treatments you can try?

Yeah there are, which is the drug that puts your body into a chemical menopause.

The coil for the most part helps people to live an ordinary life as it reduces both the frequency and flow. For the majority if you don't have a period then you can't have pain.
Unfortunately for me I have the opposite in that because I don't have a period I always have pain.

I'm ina and e (have been for hours), DH and DS have just left so they can eat and get DS to bed. I'm sooo fed up. It hurts so much yet I feel like a huge pain in the backside

Oh wobble I hope they give you some lovely IV pain relief. I think you might have to start considering a hysterectomy so you can actually enjoy life again

I'm struggling to get them to help me to be honest. I've just been told that I can't keep going back there because they can't do anything else to help me. I'm devastated on top of everything else.
I'm going to go to a different hospital because surely that's not right?
I really don't know anymore 😪

Can’t they try and give you IV pain relief to stabilise your pain? Admit you and get you to see gynae tomorrow? Surely there must be something?

I think the problem is that gynae is part of a different hospital, albeit mere feet away but still different management.

I'm lost I just lay all night sobbing. I'm not the type to stamp my foot and demand especially when it comes to the nhs but I genuinely do not know where to go from here.

I'm not surprised mental health declines rapidly with long term pain sufferers though. The worst thing I'm put up against is that once I've had the lap, the idea is the pain goes so every HCP asks me just to carry on a little longer..

Any idea how long you’ll have to wait?

I was told end of may/beginning of June as a rough idea but I've not been given a date yet

I'm at my gps again. My SIL who's an a and e nurse advised me to go to a different hospital but I'm petrified of being told the same. I really don't know what to do anymore so I'm just sitting in the waiting room crying like a loon

Did you get into your GP? Could they try a slow release patch like fentanyl?

I did yes thanks for asking! I spent an hour with the senior partner of the practice. Pain management wise he has said that I won't have anymore barriers to get what I need and I can go to him with new ideas (I will look into what you've suggested).
He spent most of the time discussing dealing with other problems in my life and showed me strong evidence for the relationship between childhood trauma and endometriosis and then recommended a pioneering freedom program to me. It was eye opening.
He showed a ted talk (never done that with a doctor before) and as I was leaving I thanked him for spending so longbridge with me and he choked up and said that he would spend all hours with me if it meant I got better.
A wonderful experience after yesterday!!

Oh that’s brilliant! I’m so pleased that you have finally been listened to and offered some other routes than “just wait for your op and go away”. A slow release patch basically gives you a baseline of pain relief and you can have meds for breakthrough pain as well. It might be more suitable for you as you are in pretty constant distress. I’m a firm believer in the mind body link and I’d grab every thing he offers. How nice to see there are people who really care about well being not just time scales.