please can anyone help with how to manage the excruciating pain with endo?

[AFC007]

I'm currently prescribed mefenamic acid (250mg tabs) and cocodamol (30/500mg tabs) but the gp said there is nothing else. They barely touch the sides and I'm in complete agony. Does anyone have any ideas/help that they could please offer me? I have a heat pad constantly attached to my tummy but even that's not eliminating it completely. Please any help would be SOoooo appreciated 💛

[Mindfullness4791]

I'm sorry you are in so much pain..I swear by Naproxen and Co-dydramol, which is stronger than Co-codamol x

[AFC007 in reply to Mindfullness4791]

Thank you so much for the reply. So pleased they've helped you, I will see if I can get them from the drs x

[Brambledoggy]

Morning. No meds helped me, not even liquid Morphine. In the end I took Paracetamol with Nurofen (together) in safe dosages and that took the edge off. Try and take “before” the onset of pain. Also go and get a TENS machine from Boots. Have a look on internet first. I bought a Livia device, see if they help. Hope they still make them, not sure of price? Take some getting used to but worth it (for me anyway) Good luck. Nina.

[Brambledoggy]

Don’t get the Livia device from USA, they walloped me with a giant customs tax. I see there’s a device called Myoovi in UK which also has good reviews. Not cheap. They should be free on the NHS IMHO!

[AFC007]

thank you so much Nina! Really helpful. Yeah I was actually looking at the Myoovi one, only thing that's put me off is the price ... but as you say could be worth it and it does have good reviews. And tbh at this point I really would try anything so I'll give it a go. Thanks so much for your help. Rebecca x

[BloomingMarvellous]

A number of suggestions to help out. Pain from endo is thought to be aggravated by the fact that endo lesion tissue is nerve rich with those self same nerves being stripped of their protective sheath. Standard pain relief is little use by this analysis so some medics go down the route of Amitriptyline and Nortriptyline. The latter has less side effects but you will need to ensure you drink plenty of water with it . Takes two weeks to really kick in and is taken daily. Lowest dose is supposed to be 10mg but I take 5 and get relief but less zombie like.

Curable App ! Honestly worth its weight in gold. GP can prescribe a free trial for 6 weeks or you can try it free for 2 weeks yourself just signing up. Not costly and always available. Only side effect - you have to put the work in.

Get yourself a copy of Heal Endo by Katie Edmonds and work out your pathway. Everyone’s a nuanced version and there’s plenty of well evidenced research and sensible tips.

[AFC007 in reply to BloomingMarvellous]

Thank you SO much for all your suggestions. I am looking at the Curable app now and I will definitely get that book and look into getting those meds. Thank you for your help

[BloomingMarvellous in reply to AFC007]

Hope you feel better soon xxx

[1Poppy1234]

I have oramorph they don't like to give it but if you use it every now and again like every fourth day as it's addictive it does give some reprieve but I had to push like mad for it. X

[AFC007 in reply to 1Poppy1234]

Thank you Poppy!! Yeah the GP said they won't give me anything stronger but I'm going to try x

[1Poppy1234 in reply to AFC007]

I told them I couldn't cope with it, I told the consultant too and asked them to give me a prescription for it. I'm very careful with it though. Also you can ask the consultants secretary for it. Xx

[AFC007 in reply to 1Poppy1234]

Ok thank you. I'm going to ask for it too! Glad it's helped you a bit xx

[Pacotj]

mefenamic acid didn’t touch me, I find that etodolac is better, and tramadol instead of cocodamol which I take with paracetemol. When the pain is at its worst though, the only thing that helps is morphine. But the pain clinic reckon that physiotherapy will fix me and i should just take anti depressants for pain instead 👍 obviously haven’t taken their pitiful advice. Oh and I use lidocaine patches too x

[BloomingMarvellous in reply to Pacotj]

Please folks take a breath and do good thorough research before ditching stuff. I totally get being at the end of our tether with pain and feeling utterly fobbed off but before pushing stuff away get the why behind the suggestions ……..

You might want to revisit the “antidepressants “ being a poor suggestion. They aren’t suggesting necessarily that you are depressed or some kind of emotional judgement. Some medications are repurposed for pain relief because of how that source of pain operates. Paracetamol, tramadol, morphine manage pain differently to the nerve pathway pain relievers such as amitryptyline or Nortriptyline . Different mechanisms. Endo tissue is nerve dense and is partly why it’s so bloody hard to get ontop of. Morphine etc aren’t the best routes to managing that type of pain. You still might decide they aren’t for you but understanding why they are put forward is useful. Everything has downsides and side effects but if it’s an exchange for relief of the chronic grinding pain that’s a start.

Swelling and inflammation in the pelvic region caused by the lesions will also cause additional pain burden and movement changes which aggravate pain further. Proper pelvic physio is imperative whatever else we do for long term management. Surgery or no surgery, hormone treatment or not … we all could really benefit. It won’t necessarily cure pain or the endo but it’s key to pain relief and life quality. There is a lot of poor pelvic physio out there but have a listen to @leah.brueg podcast (52?) with pelvic physio specialist Dr Angie Muller to understand the practical factors around this discussion.

Feeling ambivalent about methods that are poorly understood by both the people poorly delivering the service and people receiving it doesn’t negate its value. Ensure you get the best.

[Pacotj in reply to BloomingMarvellous]

Totally understand, issue is I’ve tried gabapentin, pregablin, amitryptiline and noratryptaline all with negative side effects that were intolerable. The advice I was referring to was the physiotherapy side of things, just felt unheard and let down by the service as the only thing they are offering me is physio and feel like I’ve been passed back and forth (being referred to the consultant from physio to now be referred to physio from the consultant)

[BloomingMarvellous in reply to Pacotj]

Of course it’s a horrible place to be and totally with you on being passed around. It’s a grind. I found the Curable App a breakthrough but also have to add proper surgery , NAC therapy or as per the Edinburgh University protocol is likely to be essential for rooting out a lot of issues. The poor level of care and terrible access in UK just really a big issue for all of us.

[Pacotj in reply to BloomingMarvellous]

Totally agree, it’s truly exhausting. I’ve worked in healthcare for a long time, in theatres, and see how woman such as myself are treated and the difference in care between the medical specialities. What is the app you’re referring to? I forgot to mention to OP that myoovi has been a lifesaver for me when I’m working to keep me at work, and I get regular massages with an abdominal therapist. I also asked to be referred to pelvic physiotherapy, however that was short lived as they discharged me due to unmanageable pain.

General lifestyle changes such as trying to eat well, and rest (not exerting yourself in exercise!), rest is the number one thing which can dictate my day or week.

[BloomingMarvellous in reply to Pacotj]

Try Curable app. Free for 6 weeks if prescribed by GP or 2 if you sign yourself up. I’ve found it really helpful but you have to put the time in especially at first. It’s cheap thereafter.

Try looking at @corerecoverypt and the hypopressive breathing techniques. I went from morphine laden screaming with pain unable to get off the sofa for months to being functional. I did - few zoom sessions as one to ones but she now does an online course which also did. Frankly in middle of pandemic it was a lifesaver. Being a true specialist in the area really really helps - plus acknowledging that standard pelvic physio is woefully inadequate was an excellent place to put together a functional programme that really addresses the problem. I was literally on the verge of quitting life with the level of awful pain so am eternally grateful to have found something well founded and successful. I don’t quit until have turned every stone ( guess it’s being an acupuncturist and nutritional therapist also gives me a thorough physiological and biochemical understanding)but I was utterly done. We’d even discussed how to get me to Switzerland my husband was in despair at the poor pain management and appalling care.

I never understand why medics in the field don’t acknowledge that one route is not the saving grace . A three legged stool rests on 3 legs not 2 or 1. We need biochemical , physical and psychological approaches together for real care and recovery. Just even getting different teams to share info these days let alone work together seems a pipe dream.

[PM24]

You poor thing. It really is crippling. I started off with Codeine then asked for Tramadol which I was prescribed, then, after a particularly awful attack of pain I called the GP and asked for Morphine which I was given. I think it was because I was rather assertive and just directly asked for it rather than just asking for a painkiller. I was in agony at the time and I think the GP could tell this.

However, nothing really takes the pain away. Morphine makes me vomit so I avoid it unless I really have to take it. But I find Codeine makes me sleepy and relaxed so I tend to rely on that.

I really hope you find relief. Contact the consultant you’ve been dealing with if you’re unable to get help from your GP. Don’t take no for an answer. Good luck.