Coping with the pain: Hi Guys, Hope... - Endometriosis UK

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Coping with the pain

Booknerd1598 profile image
33 Replies

Hi Guys,

Hope everyone's having a good a day as they can.

Ever since my lap in July 2 2and diagnosis of endo stage 3 with cysts. The pain has been horrendous, much worse than it was before. I've repeatedly gone back to my drs to ask for pain relief or some help in anyway.

Apparently they never got my discharge paperwork so they said they can't do anything until then!I really emphasised my needs and they said they wouldn't try anything else. I'm on cocodamol 30/500 and Diclofenac 75mg, it's just not cutting it at the moment and I always get the impression they think I'm just asking for the sake of it!

I know drs are reluctant to give out stronger pain medication due to addiction reasons. I wanted a review of my medication but she wouldn't even do that.she said she was going to refer me back to the Gynaecologist, but looking at my notes she hasn't done that either.

I've tried tens, heat and ice packs, aromatherapy oil and the medication.

Has anyone got any tips I could try please, even if it's something small

Thank you for listening to my rant any advice would be hugely appreciated!

Best wishes to everyone

33 Replies
CryBaby91 profile image
CryBaby91

Hi :) Have you considered CBD oil? It's not a cure by any means, but may take the edge off. Also, I find heat works better than cold treatment, but that's me lol. Hot water bottles and plug in heated pads are my life line!

Docs are reluctant to hand out opiates yes, but reluctance shouldn't mean leaving a patient in so much pain they can't function. Ask to see a female GP, that occasionally helps. Be brutal with them, tell them this is preventing you from having a life and you can not be left like this. There's tablets like gabapentin which are not opiate based, they could easily try those with you. You could also push for a referral to pain clinic, they only deal with pain and will listen to what YOU need, regardless of why you have pain. They can do stuff like physiotherapy, acupuncture etc.

Might sound contrite but doing yoga daily has been a huge help for my pelvic pain and back pain! I can stretch my back out really gently and it gives me some extra mobility when I'm all tense and seized up. It isn't a cure, doesn't get rid of the pain entirely, but it does help slightly. I use YouTube and put in Yoga for Endo :) there's so many free videos, it can really help.

Most of all, keep a diary of your symptoms. Track how they flare depending on your cycle, plan around bad days. On better days try and keep up with a good diet and some exercise, bad days you may have to do less but it can help to do a little bit. Listen to your body, you know what hurts and what helps. We can all be different! But take control of everything, basically become your own health monitor haha and then take all the information you collect to the GP to get them to see what a month in your life looks like. Xxx

Booknerd1598 profile image
Booknerd1598 in reply to CryBaby91

Thank you so much for replying, I haven't tried cbd yet but I'll give it a go and the yoga! Thank you for the kind words x

Art33 profile image
Art33 in reply to CryBaby91

so grateful to read this,the diary is such a great idea,its helped me so much as i had a horrible experience with gynae today,what was meant to be a process towards recommended laparoscopy after a really ill six months and many other health professionals directing towards suspected endo, turned to me being dismissed based on the last clear scan and my notes that i am simply mad and to see about my mental health,..reading this and seeing the women on this page support,encourage, and advise one another has really soothed and empowered me to understand one opinion on a clear scan and notes are not an end and that there is hope for my sanity yet,so unbelievably frustrated though but know i can pirsue so many suggestions so grateful too,big hugs🙂

CryBaby91 profile image
CryBaby91 in reply to Art33

I absolutely hate hearing people say they get dismissed over clear scans, it fills me with rage and disappointment. There really needs to be NICE guidance given to these gynaes so they understand that clear scans do not mean no endo, so they stop telling patients they are fine when they might not be! My ultrasound scan was 100% fine, everything was "normal". During the lap they found both fallopian tubes full of endo and a thick band of adhesions where my cesarean is that fused my anterior wall to my bowel. I wish i could call the gynae that told me it was in my head! They should be absolutely ashamed. I'm glad the forum has helped you to feel more in control of your health and empowered to push for proper answers. Pain is not normal. And being a woman doesn't mean we should deal with it. Cyclical pain is not caused by mental illness either, so keeping the diary can help with that argument. It is so easy to fob us off with "you're depressed", but i can say from experience that it is not always that simple. I did deal with my mental health and was suckered into believing it could be all from my childhood trauma, all that happened was I got worse and worse. Yes i could deal with my mental health better through mindfulness and stuff, but my pain remained. That's how i knew it wasn't caused by my mental health, I just wish i hadn't listened to them and delayed my diagnosis even further. Xxx

Lindle profile image
Lindle

What is the treatment plan going forward? If the lap was done in general gynaecology you now need referring to a specialist endo centre with stage 3.

Booknerd1598 profile image
Booknerd1598 in reply to Lindle

My gynaecologist discharged me after a 2 min phonecard telling me about my diagnosis so I have no treatment plan other than the pill in his eyes. I'm considering going private now just for a consultation as I need to be rereferred. I was unaware about the specialist centres.

Thank you for replying x

Lindle profile image
Lindle in reply to Booknerd1598

Are you in England or one of the devolved boards?

Booknerd1598 profile image
Booknerd1598 in reply to Lindle

England

Lindle profile image
Lindle

Will get back later. Did you get a discharge note saying where the endo is and presumably the cysts are endometriomas? Do you know which side or both?

Booknerd1598 profile image
Booknerd1598 in reply to Lindle

Unfortunately I was only informed that I had stage 3 and had no decent follow-up and no discharge paperwork which is what I'm chasing now. Thank you for your help x

Rocket14 profile image
Rocket14

Hiya, sorry to hear what you're going through. I'm on tramadol twice a day with paracetamol as a top up. I'm cutting back on tramadol as they are addictive. A&E recommended I doubled the dose on a bad day and when I said they're ment to be additive, the doctor said people who understand this don't normally become addictive!!!! Really.

Heat has helped me a bit but lying down if possible helps me.

Booknerd1598 profile image
Booknerd1598 in reply to Rocket14

Thank you, I really think it comes down to the individual dr at the end of the day. Heat does help me aswell.

CryBaby91 profile image
CryBaby91 in reply to Rocket14

Do you both have a plug in heated pad? Hot water bottles are great but can't be laid on, so I use a heated pad for my back and long bottle for the front. Heated wheat bags are good for your neck too :) xxx

Booknerd1598 profile image
Booknerd1598 in reply to CryBaby91

I have an electric heat pad which is more or less my lifeline at the moment!

CryBaby91 profile image
CryBaby91 in reply to Booknerd1598

Mine too haha I can massively recommend the long hot water bottles if you don't have one? They stretch your whole side, it's super helpful for when your whole side hurts xxx

Booknerd1598 profile image
Booknerd1598 in reply to CryBaby91

I used to have one, but found it was too fiddly to fill up and I'm clumsy as it is haha! Glad it helps you x

CryBaby91 profile image
CryBaby91 in reply to Booknerd1598

Oh no! I'm quite clumsy myself and have to really really focus when i do the bottles, hence buying the heated pad to reduce the need! Apparently there are ones you can buy that wrap around your body and have a heat pack in the back, usually they are for sport injury but it might be worth a try if you need to be active whilst using it. I'm tempted to try one :) xxx

Booknerd1598 profile image
Booknerd1598 in reply to CryBaby91

Does sound tempting! Might try it if I could wear it at work that would be amazing as I'm always on my feet! It might be worth it , anything to help the pain at this point am I right aha x

hanybobany profile image
hanybobany

Hi lovely, I would get in touch with the hospital that diagnosed you and tell them to get their arses in gear! Ask them to email you the discharge paperwork and explain that you can’t get proper pain relief until then. Unfortunately, as you probably know, everything is a fight or uphill battle when it comes to endo. Also, find a specialist endo doctor or nurse in your area and demand your GP refer you to them. In the meantime, keep talking to people and tell them how you feel (this forum is great). I wish I could say that it’s an easy ride after diagnosis but unfortunately it’s usually not because most healthcare professionals still don’t know a lot about endo and the effects it can have on someone’s life. It also depends on where you live as to what treatment is available. You may have to travel to see a specialist but I would highly recommend that you do. Keep fighting and know that you are not alone. Sending hugs!

hanybobany profile image
hanybobany

Forgot to say. I currently take codeine, diclofenic suppositories (these are fab because they last for 12 hours) , pregabalin (taken at night because they make me extremely drowsy) and top it up with paracetamol. The pill is not pain relief and didn’t work for me due to the many side effects and the fact that it does not address the problem. My endo is stage 4 and I will probably need surgery in the near future because it is so unpredictable and dictates my life. Anyway, I hope this helps 😊

Booknerd1598 profile image
Booknerd1598 in reply to hanybobany

Thank you that's really helpful, feel like I'm pulling my hair out with it all it's been hard to cope with the diagnosis as I kept being told it will be nothing!!. Definitely going to keep at it. Be easy if they actually listened to their patients for once!

Prilo profile image
Prilo

I have read that cocodamol worsen the symptoms of Endometriosis. This has been my case as well as I only started having pains after I started using cocodamol for my period pains in March this year. So it’s even better to try other pain killers instead, as cocodamol will only stop the pain for few hours then worsen it afterwards.

Booknerd1598 profile image
Booknerd1598 in reply to Prilo

Thanks for replying, I've not found it that helpful either to be honest. I hope you found something now that helps x

G_A_A profile image
G_A_A

Hi 😊Medication wise I currently take combined ibuprofen and codeine tablets followed by paracetamol two hours later - although sometimes all that does is knock me out or just reduce the pain a bit but not fully get rid of it

Additionally I alternate use of the following:

- Electric heat pad

- Hot water bottle (if I can’t use my heat pad)

- CycleSoother

- Electric massage pillow (like this amazon.co.uk/Massager-Shoul...

I also try and distract myself with things I like to watch.

Sorry if this is a silly question, and I understand you don’t have the discharge notes as well, but do you know if they actually removed the cysts and much of the endo?

I hope some of the suggestions help!

Booknerd1598 profile image
Booknerd1598 in reply to G_A_A

All I'm aware of is removal of one cyst on my ovary not sure which side but I'm guessing left as I had alot of pain on that side before, and some endometriosis tissue.

Never thought of a massage pillow, they look quite nice!

Booknerd1598 profile image
Booknerd1598 in reply to G_A_A

Is the cyclesoother worth it? I've seen it a few times now and wondered if it was just a heat pad?

G_A_A profile image
G_A_A in reply to Booknerd1598

Yes the massage pillow is definitely worth it! I’ve had mine for about 6 years now

As for the CycleSoother it’s 50/50. For me personally it definitely doesn’t tackle high level intense pain, but once my pain is at a low / mid level then it plays it’s part. It does have a heat function but I don’t find that side of it that great. The other function which is the pulsation/vibration is what works for me, it almost feels like it shakes the pain away and makes my body forget that it’s there 😂 It’s almost like a TENS machine I guess, but slightly different. Also it’s not as discreet as it’s made out to be because it’s loud, it literally sounds like an electronic shaver/clippers. So all in all it’s not the worst purchase in the world, but it’s not the first item that I reach for.

Booknerd1598 profile image
Booknerd1598 in reply to G_A_A

Thank you! That's really helpful, definitely look into the massager!

Lovedsibling profile image
Lovedsibling

Hi Well it’s been almost 9 years since my diagnosis of endometriotic cyst was made but after my daughter it has got worse

My pain starts before period during period n then stays even after period

Almost 10-15 days a month a require pain relief

Paracetamol doesn’t do much

Heat pads are good but I’m a working mother so can’t do do in work place

Suppository are good as they provide pain relief without causing acidity

Haven’t tried tens or cbd oil

Anyone can share experience about that

Booknerd1598 profile image
Booknerd1598 in reply to Lovedsibling

Thank you for replying, I hope you find something that works. Tens is OK for me for a bit but doesn't help much in my experience but everyone is different.

CryBaby91 profile image
CryBaby91 in reply to Lovedsibling

CBD is good for inflammation, I use it daily. Not a complete relief but it does take the edge off it all! Not a weak CBD though, highest strength possible. TENS is good as a distraction, I've found it most useful for my back pain but on my belly it didn't help. Everyone is different though! If you need to be able to use something when moving around because of work then you can get wrap around heat packs which are like a body wrap with velcro, then it has the heat pack in the back or front. Some are just for hot water bottle inserts but some are rechargeable packs :) amazon do a good range, just put in rechargeable hot water bottle and there's a few different styles :) might be helpful! Xxx

Lovedsibling profile image
Lovedsibling

Thanks for replying Any I get some recommendations for tens and heat pads rechargeable

As there are many companies and I don’t want to waste money

Booknerd1598 profile image
Booknerd1598 in reply to Lovedsibling

I've personally got beurer off of amazon found they are decent tens and heat pads.

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