Advice for pain: Hi everyone, I’m recently... - Endometriosis UK

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Advice for pain

Marley2017 profile image
14 Replies

Hi everyone,

I’m recently diagnosed with endometriosis and still awaiting my follow up appointment which is in late June. The pain has been getting progressively worse over the past year and my most recent period (currently on day 8 of this) has left me bedbound for the last 3 days screaming and writhing around it’s been so bad (on my 30th birthday of all weekends!). The gynaecologist recommended a medication (an acid beginning with a but I can’t remember more than that) but the GP is refusing to prescribe as they’ve never received the letter from her. I have borrowed some mefanamic acid from a friend (I know I shouldn’t but Im desperate), paracetamol doesn’t touch the sides. My husband wanted to ring an ambulance over the weekend I was in so much pain. I’ve never experienced pain like this (and I’ve given birth) and I’m at my wits end. Any advice or tips to help with the pain that’s not medication based (with GP refusing that doesn’t seem like an option at least for the next couple of months till I’ve seen the gynaecologist again!)??

Thanks in advance xx

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Marley2017 profile image
Marley2017
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14 Replies

I'm sorry to hear you are in so much pain. My gynaecologist mentioned cannabis oil. I don't know much about it but its supposed to work for pain management.

Marley2017 profile image
Marley2017 in reply to

Thank you for your reply. I’m going to have a look into cannabis oil now.

Faybee87 profile image
Faybee87 in reply to Marley2017

CBD oil really works for me, build up slowly and use a reputable company. I use Love CBD and use the balm topically as well as the oil sublingually. I turned to it because I can't take ibuprofen or aspirin and strong cocodamol from the doctor works great until it makes me constipated! I was taking cocodamol regularly but now only take it infrequently in extremes thanks to the CBD

Ginge32 profile image
Ginge32 in reply to Faybee87

Hi, I’m really interested in CBD as an alternative pain relief but don’t know where to start!

Where did you get your CBD from? X

Faybee87 profile image
Faybee87 in reply to Ginge32

I get mine from lovecbd.org, they send you a leaflet with your order explaining the dosage, I just followed that and it's worked beautifully. Don't be tempted to take more than recommended, I did at one point and it gave me the worst migraine I've ever had. Kind of shows how powerful it can be though!

hm89 profile image
hm89

Happy 30th! Sorry it was so rubbish for you. I never bother with paracetamol, but I try and take ibuprofen preemptively as it has more effect that way, or for very bad pains rub voltarol on my lower abdomen, especially around my hips. You can't take it with ibuprofen but it's stronger and works quickly as it's a gel. Also, seconding Clara on the CBD, I haven't used it for cramps but it worked really well on a shoulder injury I had, plus it really lightens your mood!

Marley2017 profile image
Marley2017 in reply to hm89

Thank you. It wasn’t a terrible birthday, at least I had a very patient husband and son helping me out! Going to try the cannabis oil..pains subsided a little today and it’s worth trying anything to not go back to this weekend again!

Immy1992 profile image
Immy1992

Hi Marley.

I was diagnosed 3 days ago with endo "spread everywhere" the dr said after my diagnostic laproscopy surgery. I'm now awaiting for my next surgery appointment and my follow up discussion within 2weeks time, to have it removed (cut out). In the hospital I stayed in for 1 night the nurses were good to me and I was looked after well, they kept all my pain medication (morphine, I.V drip & fentanyl, first day, then tramadol, coedine and paracetamol and ibuprofen then next day) topped up as much as possible. I am still in pain now recovering from diagnostic surgery and from the ongoing endo, but they have given me 7 days worth of coedine and anti sickness pills, which I'm not taking unless absolutely necessary, as I hate feeling like a cabbage.

So I would say what helps alot without medication is to now stay rested, step back from heavy work if you can and be comfortable, be aware you are a lot more sensitive and fragile to things now. (posture- do not stand for too long, 5 mins is deffo long enough, lie on back or on left side, clothing- loose fit or no trousers or knickers if possible, obviously no sex at all either is important, don't use tampons use pads now if you bleed) and drink plenty of warm drinks like tea's and lots of water. Go totally gluten free and dairy free and eat little but more often helps too. All of these tips should help decrease the irritation and flair ups of endo resulting in unbearable pain and bloating. These tips will hopefully help you ride out the pain a little more untill you get a more permanent method like surgery.

Good luck and stay strong

Marley2017 profile image
Marley2017 in reply to Immy1992

Oh I hope you’re recovering well from the surgery! Pain meds are all well and good while you’re in hospital and there’s nothing else to do but they’re awful at home. I remember being on tramadol and codiene after another surgery (completely unrelated) and not being able to work out why I felt so zoned out and sleepy!

Thank you for all your advice, some of them I already do but there’s lots there to try so it’s worth experimenting with anything at this stage. With regards to not being on my feet I’ve been so much less active for the past year cos of this and the weight is piling on its depressing! And married one month ago and no sex...poor husband has dated an active healthy girl for 7 years and suddenly we get married and it’s all gone out the window this year (we laugh about it cos what else can you do eh!)

Best of luck with your recovery and upcoming surgery x

thelordsanger profile image
thelordsanger

your husband is right if the pain is above child birth your well with in your right to ring a for ambulance. mefanamic acid is not a opiod so i would not worry if it was Tramadol i would so no. its your GP job to chase up the gyne i would find your nearest Patient Advice and Liaison Service (pals) just type it in to google . as they can talk to the gyne and relay messages ect tell the its a emergency please no false humility if its a answer phone say so again on the machine please let us know how you get on

Marley2017 profile image
Marley2017 in reply to thelordsanger

Funnily enough I had a text from the GP this evening saying there was a prescription waiting for me so they must of spoken to her since I spoke to them last week.

Thank you for your advice, I’m a nurse (mental health) and im great at advocating for everybody else and advising them on what to do but won’t do the same for myself! Silly really.

The pain has subsided now and I just have a dull all over ache so hopefully that’s the worst of it over until next time.

thelordsanger profile image
thelordsanger in reply to Marley2017

what was your perscripton my wife say her mefilic acid is geting less efective she wants to ask for what you had does not mean she will get it though

Immy1992 profile image
Immy1992

Thankyou, I'm recovering ok so far each day.

Congratulations to your marriage and I'm sure he understands. He can be there with you through this journey and it will make you a very strong couple. You will have to think of other ways to enjoy eachothers company as much as possible while your waiting and being "Mother Mary" for a bit, it will be worth it lol.

Good I'm glad there were a few things there to help, but if you have an instinct that something might be triggering the pain off a little more its probably worth listening to and seeing if stopping that helps you out a bit, as it's your body it's good to listen to it's signals.

As well as you mentioning weight gain yes I'm going down that road and I've only been off work for not even a week yet, it's amazing how quickly this happens lol, but I'm going to stop with the Chinese takeaway rice and noodles and chicken and mint chocolates and much more, and go back to fruits, veg and salmon from tomorrow.

I think we have to make ourselves as healthy as we can to feel better.

Best wishes

Imogen xx

Faybee87 profile image
Faybee87

Just to add, I follow the primal blueprint, and that's really helped in terms of reducing flare-ups and keeping the weight down. I was already strictly gluten free before I even knew what endo was so hard to say if that made a difference, but the PB is really healthy without you feeling like you're cutting everything out. I've made a point of focusing on eating around 9 portions of fruit and veg a day (max 3 fruit). The Mark's Daily Apple website is a great resource if you want to know more.

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