severe excruciating constant pain

[Cosmo21]

Hi everyone,

I am in the process of being diagnosed with endometriosis, have had an appointment with the endo specialist in my area who has said that he suspects I do have endometriosis and likely on the severe end with my uterus fixed in retroversion and some abnormality behind the cervix. I am every single painkiller under the sun, I can’t take NSAIDS orally like ibuprofen or mefenamic acid as it causes me to have severe stomach ulcers and rectal bleeding due to an interaction with another medication I have been taking for about 5 years now and cannot stop. I’ve tried rectal diclofenac but that did nothing for me despite all the doctors and the pain team telling me that it would be a miracle drug for me and that it would really help with my pain. I am a nurse and have been for 4 years working in acute medicine and so I have really been struggling with balancing my pain relief while feeling safe enough to practice, I won’t take any opioids and go to work and then end up in a&e because my pain is uncontrollable or sent home and curled up in bed for days until the pain settles. As such I have been on/off sick leave but have just come back a couple of days ago and have managed shorter shifts with support from my managers. When I’ve been in a&e it seems like doctors are just clueless and just keep me in until my pain is just about bearable and the second I seem “better” they discharge me with nothing having changed and feeling just so frustrated. My pain never goes away. It is constantly there, I describe it as someone going up inside of me, grabbing my organs, squeezing and twisting, letting go and then the cycle starts all over again every 2 minutes. It is unrelenting and unbearable. The painkillers im on (dihydrocodeine, paracetamol and oramorph) barely touch the pain. I’ve tried alternatives like a TENS machine, hot water bottle, hot showers etc and they have minimal effect too. This is ruining my life and has taken everything from me, I can’t eat, I can’t sleep, I can’t even shower without the support of my partner. I guess what I wanted from anyone who is reading this is some support and just some reassurance that this is not going to be my forever and that there’s light at the end of the tunnel. I’ve had a pelvic MRI that is waiting to be reported by a specialist endometriosis radiologist and then im going to be put on the list for surgery with colorectal involvement depending on what the MRI shows. I am just so fed up with this and how it’s taking over my life. My mental health has really taken a nosedive and I am really struggling recently. I am really sorry for the long post but I wanted to give context to what has happened. I’m really grateful for any advice and support you can give me.

Lots of love <3

[Sucrepouffe]

Wow Cosmo, you’re nursing 12hr shifts through Endo hell! Amazing! I’m with a pain team at my local hospital and they’ve given me Gabapentin ( I had used it before for other nerve pain ) but they upped the ante to 3600mg a day, which is the limit. That in conjunction with slow release Tramadol at 400mg in 24 hours plus otc Solpadeine, Nurofen helps but doesn’t completely kill the pain. My symptoms are much the same as yours, in my pelvic region it’s like someone is playing Fruit Ninja with a burning hot blade, just cutting and tearing at random. Gaba is considered safe as far as addiction goes, safe from ODing. My first lap was at 39 but I had symptoms from age 14-1998. From then until my diagnosis I Knew every 2nd period would be hell for the 1st 3 days. Debilitating, missing work, agony, vomiting, not eating. I’m currently waiting on a consult for my 2nd lap hopefully to remove some from my bowel. I have toasted skin syndrome, over my pelvis and top 1/3 of my thighs. I’ve had pain all the way down to my knee, in my groin, back and of course all over my pelvis. I think you should read up on Gabapentin if you’re not aware of it and maybe ask your pain team for a trial. Hopefully you’ll find it grants you some semblance of a life. I still live with excruciating pain every day, and like you my mental health is the pits. I’ve been extremely active all my life and this disease has just halted everything I love to do. Give it your best and try with the pain team for the Gaba. I tried Pregabalin but it didn’t work for me although it may for you, so all the best of wishes heroCosmonurse! SP🌷

[Mindfullness4791]

You poor thing. I am in a similar situation to you, on that I am waiting for a diagnosis. I'm 50 and had a hysterectomy last year. They said I didn't have Endo but I obviously do as the pain is horrendous and gynae now believe I do.I swear by Co-dydramol. It is the only thing that kills my pain. Along with any kind of heat. Plug in heat pads, stick on heat patches and I even have a wearable heat patch. I have also just started Duloxetine. Which is the only drug approved by Nice to relieve pain. I'm only on a small dose, so hopefully once it's increased I may see some improvement.