Worst endo pain ever😩

[JodieRose13]

So Wednesday I began my worst flare up of endo that I’ve ever known, I’m struggling with what to do for pain relief, I only have co codemal, but that barely touches the pain, I’ve been for urgent scans and that shows nothing else ‘bad’ going on in me which could of perhaps explained this severe pain, but no it’s my endo making itself known again! Does anyone have any advice for pain relief as I feel so helpless and low about it all.

[Rehanat]

Go to ur drs, they shud prescribe stronger pain relief x

[JodieRose13 in reply to Rehanat]

I have an appointment next week thank god! Hopefully they do give me something stronger

[Rehanat in reply to JodieRose13]

They will, I’ve ended up gettin codeine as paracetamol/ibuprofen wasn’t helping anymore .

[Anna19901]

Hi just read you post Have you tried Amitriptyline or noratriptyline before if you haven’t you could speak to gp regarding this I’ve tried them before at the beginning they worked great but stopped working for me but for some people they work great hope this helps

[Xroisinellenx]

Hi, I feel for you so much, this has been me the last couple of weeks. I had to go for a urgent scan too but they said it’s just Endo getting worse and told me to up my codine to 2 tablets at a time.

Then Friday night I was asleep and suddenly the pain woke me up and I could not move! My partner rang an ambulance for me cuz the pain was so bad but they did not turn up for 5 hours!! I ended up just dosing myself up on pain meds and watching Netflix to distract myself. Then i took tramodol on Saturday morning and slept the day away, but the pain was still there, tramadol is good if you can just sleep cuz it lets you fall asleep but it does not get rid of the pain.

Codine seems to help me. Xxx

[IndigoMoon1234]

When my pain gets really bad (crawling round the floor bad), it appears to be when an endometrioma ruptures.

I have tried so many different types of pain relief and nothing touches the pain. The only thing that helps a little is a hot water bottle.

I recently attending a pain management course. They made lots of suggestions including pain meds, surgery, hot water bottles, tens machines, hot baths, gentle exercise, change of diet, distractions, heat patches, accupunture, massaging the area, weight loss, meditation, relaxed breathing, muscle relaxation programmes.

The nurse at the hospital also suggested rubbing clary sage essential oil in area. Her endo pain is so bad she faints.

Hope you find something that helps you.

[E-ZEE]

Hi !Its to difficult situation I can understand ,yeah but it's true hot water bottle really helps me,also my doctor suggested me tens machine as I went to her ,I did not try it yet, but you can try these sort of things aswell instead of painkiller, I am using Naproxen it is a strong painkiller.Hope you will be better soon xx

[Thecraftyadder]

I got my GP to prescribe me some volterol suppositories for extreme flare ups. I'd been given them in hospital a few times. I tend to go into vomiting and diarrhea stage when the pain is at its peak so I have to ride that out for a few hours with a hot water bottle as I can't take anything. Then I use the suppository. Its gives 18hrs of pain relief. You mustn't take any other NSAID pain relief that day but taking this up your rectum gets it into your bloodstream really fast. I get the most horrendous low back pain and it was the only thing that knocked it out!

I've also tried Naproxen and Mefenamic Acid before though I can still feel the pain through those. Hope you can get something stronger sorted.

[Claireb79]

I find tramadol is the only thing that helps at all. I hope you get the pain relief you need soon.

Have you had a laparoscopy before? My scan didn’t show anything at all and that my ovaries were completely clear. 3 weeks later a laparoscopy showed advanced stage endometriosis covering my ovaries and my bowel was fused to my uterus! I don’t think scans really help diagnose unless there are visible cysts.

[Natduke]

I'm on naproxen, gabapentin and tramadol which all taken at once get rid of the pain but I also have 2 children so make me drowsy so can't take around them so once they are asleep or I'm with their dad I will take them they help me sleep along with the hot water bottle hope you get something stronger I take codine but it blocks me up which causes more pain so have to have lactulose with it x

[Hidden]

My dear friends,

When I was totally debilitated with pain and I saw my GP, 30 years ago, he told me that endo was so rare that I could not have the condition.

No way!!!

I also managed to get struck off by one practice for requesting pain killers out of hours. I was so desperate.

My marriage ended and I met a new partner.

My period routine was this, two extra large tampons inserted, (I had tried three but one would drop out and cause more problems! I would place two maxi pads in my knickers. I over laid them trying to work out where the most bleeding would be, and make sure I didn't lie on my back.

"This was my three weekly bedtime routine!"

I would place incontinence pads under the bottom sheet.

Then I would put tight knickers over the top to hold everything in place. Then I put on pyjamas bottoms or better still, jogging bottoms in a dark colour.

I would lie down and start praying, really praying. I would lie on my left side. Then not sleep, being aware of every clot, dropping. I never slept.

I snoozed for too many nights and got up exhausted every day.

Pain!!!

I ended up addicted to Dihydrocodiene. In those days, this drug was more readily accessible. I went everywhere to access to this drug.

My new partner told me that there was something wrong. I had no idea. I thought that I was normal, I'd had no menstrual education. Wrong, so wrong! The subject was taboo. He was so shocked and then I sort help.

I was costing me hundreds of pounds in protection. I bled through, tampons, pads, protective sheets, sheets, mattress protectors, and then into the actual mattress. I was not popular!

Anyway, final diagnosis was able to tell me that I was riddled.

EVEN IN MY RETINAS!!

If you're interested, let me know and I will tell you the rest of the saga. Thanks for reading, it's helped me to off load.

God bless you, my fellow sufferers.

[Elhems in reply to Hidden]

Hi, oh my sounds like u have been through hell! How are u now? I’ve been diagnosed since 21 now 43 and been on zoladex all that time when I shouldn’t have because of bone density! But they didn’t know what else to do. Emma x

[Mash11]

Hi there

have you tried massaging your abdominal area with castor oil? Then placing a hot flannel on top. It’s really soothing and castor oil helps to break down endometrial tissue which you will excrete. Except you must not do it when on your period or near it as it can make you bleed heavier. x

[CS32]

Hey, I take 30/500mg of co-codamol and x2 200mg of ibprophen. That seems to help at the moment. X

[ourmolly]

I had severe endo, so bad I had to have a hysterectomy at 28 years old, as the pain and bleeding was so bad they could not let me go through another period, as it was too painful to pass. Also, I had rectal bleeding with large clots. I still have rectal bleeding at 65. My ovaries were left because I was so young. Do not suffer in silence. Keep telling your GP and Consultant about your issues.

[Mel2912]

Ring your doctors and ask for a pain management appointment and then they’ll help you to try and get your pain under control I’m on morphine and diclofenic suppositories and amitripiline on a night time I’m waiting for a historectomy I’m only 35 but I’ve been so poorly for a year because of adenomyosis I’ve had 2 children I just want my life back xx