I’m looking for people with similar symptoms who can give me advice that has pain all the time not just when periods

[Mel2912]

I’ve been really poorly for 8 months I’m more a less bed bound and can’t eat much living on food replacement milkshakes I’ve had camera in my bowel bladder and was fobbed off by gynaecologist consultant eventually I’ve got my turn to go In for my first laparoscopy I’ve went from working everyday doing 12 hour shifts every other weekend walking about 10 mile a day to not being able to stand and wash my dishes without feeling like I need to lie down the pain is getting worse even with morphine I’ve begged to be admitted to hospital but they say it’s not an emergency as I’m not dying but they won’t take into consideration that I can’t look after my children or do anything with them as I can’t get out of bed much for the pain I feel like I’m cracking up cause nobody seems to care that I’m really in agony so there’s obviously something wrong

[EndoJaz]

Sorry to hear this, do you have a date for your lap yet? Maybe you should go to A and E for help, I have done this when things are bad, sometimes get sent away but other times have had scans etc. It may be worth a try if you can stand the journey. If not then at least go back to your GP and demand help. It’s horrible I know, I have spent since the age of 12 arguing that my pain wasn’t imagined or normal and only had a diagnosis aged 40. I really hope you get some help soon xx

[Mel2912 in reply to EndoJaz]

I replied at the bottom sorry I clicked on the wrong reply xx

[RJB212121]

Hya sorry to hear you’re feeling so bad 😩😢 hopefully you’ll get some answers via laparoscopy 🤞🏼. Have you had a date for it yet ? Ive also felt the worse Iv ever felt this last month . Like constant pain and all the symptoms. Just seem to be 10x as bad atm . I had some bloods taken and my ca125 level came back raised . Nothing showed up on ultra sound though so just waiting hospital appointment now with Gynaecologist. Next step is laparoscopy. Iv had all the other things done aswell think Iv had a camera every where at some point 😩😅. Hope you feel better soon . It’s hard with children to look after aswell . X

[Mel2912 in reply to RJB212121]

Thankyou for the reply I’ve given up on AnE my lap is on the 31st it’s been like torture waiting for appointments no matter how bad I’m feeling I’ve learned there’s no point in going to AnE cause I’m not dying

[Mel2912 in reply to Mel2912]

Xxx

[Mel2912 in reply to RJB212121]

Thankyou yeah it is I feel awful not being able to do anything with them through the summer holidays my laparoscopy is the 31st august xxx

[Mel2912 in reply to RJB212121]

My cA125 levels weren’t raised either

[Mel2912 in reply to RJB212121]

Do u have pain all the time or is it just when your periods due xx

[EndoJaz]

Well I really hope you get some answers and it’s successful, keep us posted. Xx

[Mel2912 in reply to EndoJaz]

Will do thankyou xxx

[TinyRoo]

Hi so sorry to hear your in so much pain all the time. I know how you feel in that respect because I have been diagnosed with extensive endometriosis and struggle on a daily basis. I had a range of weird symptoms when it first made its appearance. I know it's a shock to the system when you have been so active! I think the lap will give some clarity.

However has your doctor mentioned physiotherapy or pain management via a clinic? Does your morphine actually help? Are you taking any other pain medicines?

Sorry to hear it seems like your not getting the right support at the moment. Really hope things get clearer for you so that you can get the right support.

[Mel2912 in reply to TinyRoo]

I’m on diclofenic suppositories morphine and codeine for the pain it eases it but doesn’t completely take it away it’s unbearable if I don’t take it and also I’ve been on antibiotics for 8 months I had sepsis last year the consultant saying it hasn’t been investigated properly as they told me it was from my kidneys but it must have came from my pelvis I’ve had the same pain in my back end it feels like my cocksix bone but it’s not it’s behind it its got that bad now that I struggle to sit down all I do is lie on a pregnancy pillow on my side and try and sleep so it passes the time away till my laparoscopy xx

[TinyRoo in reply to Mel2912]

Hi, I know what you mean. I have tried most drugs and found amitriptyline helps most, especially for the nerve pain - sharp stabbing, hot pains. Just be careful with morphine/codeine as there is some evidence they might cause opioid hyperalgesia where pain can get worse and tolerance.. If I'm honest, from a pharmacy perspective and personal use I don't particularly like opioids. Sometimes use them and like you said it eases it but doesn't get rid of the pain. I take regular paracetamol 1g four times daily. Might be something you could add in if you have no other illnesses that may contraindicate its use. TENs machine or hot water bottles might help distract you from the pain. I use my old slender tone belt at a low setting. It distracts me a bit and feels like a tens machine. I just find my TENs machine falls off when I bend. I'm also trying to go as vegan as possible as I do find dairy and meats really intensify the pain (seems to be helpful in endo anyways).

Sorry to hear you had sepsis too! That is pretty serious. Glad that's being treated though. 8 months of antibiotics is such a long time! Aw pregnancy pillows are great - I use one too as my pain also is in my bottom region and deep within my back/around my hip into groin. I find posture affects it a lot too. Sometimes hurts laid on my side.

Did they do any scans of your kidneys? Hope your lap is soon so you don't have to wait too long x

[Mel2912 in reply to TinyRoo]

Yeah I’ve had loads of scans and my mri showed a bulky uterus sorry to hear that your in pain too xxx

[Hidden]

Hi love sorry to hear that xxx I’ve waited a year and all they gave me was an ultrasound they gave me a blood test and didn’t even bother to discuss my results and said they’d call back to talk about treatment. Ibuprofens and paracetamol don’t work anymore it’s hard feeling like you have to convince everyone that you’re actually not faking it and ur in excruciating pain I struggle to do activities and I’m just fed up

[Mel2912 in reply to Hidden]

It really is 😥I started to think I was imagining it and being lazy cause I was tired and couldn’t get out of bed I still don’t know what this has done to me mentally till I start to go back to work when I’m feeling better xxx

[Catd81]

Hi Mel, sorry to hear you are suffering. I was on the same pain meds as you, I’m now currently taking morphine, diclofenac suppositories, tramadol and co-codamol which has finally got my pain at a manageable level. My advice to you would be go back to your gp and tell them you can’t cope anymore and need pain management asap and then insist on seeing someone from gynaecology as you have a very limited quality of life. That’s what I did and am now waiting for my app for a full hysterectomy which I should be getting any day now. I completely broke down to my gynaecologist and told him everything I was suffering and he was fantastic, after years and years of fighting to get there someone finally listened! I really feel your pain and hope you get somewhere soon! Even if your lap doesn’t show anything doesn’t mean it isn’t there you just need to fight for it and don’t let anyone fob you off! Only you know the pain you are suffering so you’ve got to make sure they recognise it. If there’s anything I can do I’m always here to help x

[Mel2912 in reply to Catd81]

Thankyou I’ve got my laparoscopy on the 31st of this month and if I don’t see an improvement after that il definitely will thanks for the advise xxx

[Kamane]

Sending you love xxx I know how scary it can be to not receive help. I’ve recently had something weird happening to my head and was getting nowhere with the healthcare system (NHS and private!) as it wasn’t an emergency according to them. Private neurologists were booked up for months ahead. I would say keep at it, keep ringing GP or go to A&E again if the pain is unbearable. But I know my advice is not helpful as I was in the same situation and A&E just sent me home. But probably would have gone again if the pain got worse. Sending you a big hug xxx

[Mel2912 in reply to Kamane]

Thanks for the reply it’s nice to hear your not alone sending hugs to you too ❤️Xxx