Pain management

[Elephy]

One of the GPs has declined to give me anything stronger than dihydrocodeine which is no longer helping me cope with my pain. I was in excruciating pain the other night the worst it has ever been and dihydrocodeine never helped.

I have another appointment with another gp on Monday and I'm scared they won't give me something stronger to help me cope with the pain in the mean time. I have already been referred back to gyne but on a waiting list and likely to be waiting a while.

Any advice on what to do if I don't get something else for the pain? I can't bare it when it gets like that.

[endowarrior12]

I’m so sorry to read about the position you’re in, it seems almost cruel that your gp won’t try anything else. I used to be on dihydrocodine however the constipation was horrific and agitating my already bad pelvic pain. After a long time and trying many things I’ve found something that works for me. I’m on regular tramadol and naproxen, also take amitriptyline at night which has been great for giving me a proper sleep. I know it’s hard and we shouldn’t need to do this but really stand your ground with the doctor, tell them how badly pain is effecting your life and that they need to work with you to find something that works, I hope you get on better with this other doctor and that you find a pain relief that helps x

[Elephy in reply to endowarrior12]

Thank you for replying. I feel when my pain Is at it worst tramadol doesn't touch the pain and I have naproxen but I don't really like taking it as it can really upset my stomach. Hopefully he will listen to me on Monday and can provide me with something to try. I've never tried amitriptyline x

[635703 in reply to Elephy]

Hi there! So…the naproxen should be given with a gastro restaint Medicine. You take this 30 mins before the naproxen and it protects your stomach - this is an option.

You can ask about diclofenac suppository. They work well for me but don’t know if they’re suitable for you.

you can ask to be referred to pain management and if you can see a Medical Psychologist to help you manage the pain and cope with illness. Mine is amazing!!! Highly recommend and I take amitriptalyne for another condition but it helps with Endo pain.

I have been in a similar position over the years and just so sorry, this is horrific for you. Pain is seriously debilitating and I feel for you - you can stand your ground with the GP and if no joy, see another GP…..you’re likely exhausted. Lots of nurturing activity and lots of compassion towards yourself. Just do the basics and focus on resting and nurturing yourself until the pain is under control maybe?

So much love to you 💗🫂

[Elephy in reply to 635703]

I will say to him tomorrow about prescribing omeprazole and I could start taking that instead of mefenamic acid see how I get on. I will definitely ask if they can refer me to the clinic and discuss if they can refer me to a medical psychologist. I am exhausted. I am just so tired of the pain and trying to continue with normal life is hard. I'm a 3rd year student nurse and the pressure of that is enough never mind dealing with chronic pain, taking days off work and uni it is a nightmare! All I want to do is sleep 😴

[635703 in reply to Elephy]

oh darling! That is a lot. Well done for resting when you can! I am on the sofa with my duvet - exhausted also.

I have to wear an adult nappie because of bowel and bladder incontinence 😭 I’m so heartbroken that Endo is kicking my ass!!

[Elephy in reply to 635703]

Aww I'm sending you so much love 😔

The fatigue is real isn't it 😴😴

[635703 in reply to Elephy]

yes the fatigue is real. Thank you ☺️ for the love and understanding 🫂 back at ya 💗

[Hidden in reply to endowarrior12]

Do you find that Dihydroceine works? I’d like to know if you can get it in capsules with the paracetamol. If anyone knows I’d be much appreciated x

[endowarrior12 in reply to Hidden]

you really need to take papacetamol with dihydrocodiene, it really helps it to work better. Hope that helps x

[me94]

I'm the same gp won't prescribe me anything stronger than dihydrocodiene as I'm on amitriptyline as well. Plus they won't put the dihydrocodiene on a repeat prescription so have to book an appointment everytime I need more. Even though I do have endo they still won't give me anything stronger for the pain

[635703 in reply to me94]

what a bloody awful battle!! Not what you need 😭

[me94 in reply to 635703]

I know its a nightmare 😔 got another gp appointment this week so will see what they say this time. But always get the same answer 🙄

[Jade2006]

same I had a pointless gp appointment this week same thing , told them I need stringer meds .

The won’t have me anything , she’s knows my situation and how bad it is , said you have to go back to your pain clinic , which will be ages to wait .

It’s actually a joke you can’t get the right help and no one gives a shit basically .

Hope you mange to get through to someone and get the proper help we deserve x

[635703 in reply to Jade2006]

gutted for you! 😭🤯

[Elephy in reply to Jade2006]

It is a joke Jade. We are just expected to deal with the pain and you're right it feels like no one gives a shit.

[Jade2006 in reply to Elephy]

yeah Iv lost 1 ovary to this horrible disease and I’m still made out to look like a mad women .

Its crazy really no takes it seriously and makes me feel like I’m a problem x

[BloomingMarvellous]

I use a pix and mix approach to deal with the pain as found the stronger meds ended up causing as much pain with the side effects and aggravating the situation long term. I didn’t get on with Amitriptyline but found a very low dose of Nortriptyline ( 5mg which is enough !) . I do that alongside doing Omega 3 - a good quality daily at high enough dose, probiotics , removed lactose out of diet after doing a lactose challenge test and milk thistle for a year before now just doing it as autumn and spring detox. I regularly do a specific pelvic floor rehab set of exercises to help with swelling and the inter abdominal pressure that can cause much of the pain. ( try looking at Kate Edmonds book Heal Endo also for alot of useful strategies.) I found only doing the medical route even post surgery didn’t resolve or manage the pain.

[635703 in reply to BloomingMarvellous]

a blend of medicine and natural ways helps me but it depends where my mental health is at. Sometimes I don’t have the energy to think and try my strategies x

[BloomingMarvellous in reply to 635703]

Tell me about it. Nutrition can be complex. Supplements come in all manner of guises from the “fake” , inadequate strength/poor quality to the real deal. Knowing which way to step, the dose and keeping on with the therapy for long enough is also an issue. Even if you’re lucky to have a background in functional medicine like myself - too easy to get drawn into over stringent and complex routines that require a huge bank balance and still end up at zero. The number of research papers have piled through is no one’s business 😵‍💫

[635703 in reply to BloomingMarvellous]

Whoaaa 😳

[Elephy in reply to BloomingMarvellous]

The past couple of days I've replaced ordinary milk with oat milk as I've been reading a bit about anti inflammatory diets and the benefits for those with endo. I need to read more into this though and find something I can stick to. Will have a look for that book thank you x

[BloomingMarvellous in reply to Elephy]

Try checking the lactose test as it’s not always dairy that’s the actual issue. Not all milk products are off with it because it’s the whey levels. Which makes the whole dietary restriction game much simpler. Dr Google has all the dets ☺️. Research brings up that the bacteria Klebiesella can have an impact on lactose tolerance as it’s changes our bodies ability to process the enzyme . Klebiesella is one of the bugs that women with endo have been discovered to have much more of and is likely involved they think in the fuelling of endo lesions and inflammation. So it makes sense that it’s part of the dysbiosis and pain deal. Have found that Berberine supplement and lactose free has really helped me out and radically reduced the endo belly too.

[Elephy in reply to BloomingMarvellous]

Wow that's really interesting!

[BloomingMarvellous in reply to Elephy]

it’s pretty interesting stuff when one’s not crawling around with pain 😂🫣

[BloomingMarvellous]

For immediate pain reduction I found castor oil packs helpful getting down the inflammation, Epsom salts baths or foot baths if it was middle of night and a gamer changer was doing Curable app for pain management. None of it will cure but I can live a life now.

[635703 in reply to BloomingMarvellous]

I like the curable app but nutrition is also a game changer for my mental health improvement x

[BloomingMarvellous in reply to 635703]

Combination therapy - keeping on nibbling around the edges is the answer for most of us. This beast isn’t felled by one thing alone 🤷‍♀️

[635703 in reply to BloomingMarvellous]

absolutely 👍🏼

[Elephy in reply to BloomingMarvellous]

Downloading the curable app never heard of that thank you.

[BloomingMarvellous]

Hoping it helps. Having something when you’re battling the pain I’ve found comforting and means my panic levels come right down .

[Gutfeelings]

Hi

Sorry this may just be a quick reply as I am not feeling up to much currently in pain with Crohn's but have had severe endometriosis for decades and had horrendous pain so really feel for you.

I would suggest if you can try to find out if there is a gp at your practice who specialises in women's health or who has a special interest as he/she may be more likely to listen. In addition I have to say although I have been fairly "lucky" to have had good gp's I have also met doctors who clearly did not understand endometriosis pain and how severe and debilitating it is. Although there have been improvements I think we have a way to go yet...this is partly based on my experiences as a patient with endo and as a nurse and later a gynae nurse.

I would suggest you take someone with you if possible to the appointment as you are less likely to be fobbed off plus it helps if the person with you can voice their concerns about your pain levels and how it impacts your daily life.

I would mention or remind them if its a gp that knows you, of your nursing training and emphasise that as a 3rd year student you are close to becoming a qualified nurse and are able to take medication safely and as prescribed. I recently had a medication review and had to remind my gp as tactfully as possible that I had a varied nursing career for over 25yrs and that some of that was involved in a pain management role so I can take my medication safely as I have the knowledge. I think there is an increasing reluctance to prescribe and more reviews taking place due to the guidelines on opiates and potential addiction but it goes back to the lack of knowledge among some drs about the severity of endometriosis pain.

Is there a specialist endometriosis nurse at the hospital you are under? If you are awaiting a followup can the nurse liaise regarding pain management? Bit more tricky if it is a first appointment but if so it may be worth asking the gp if a letter can be sent to expedite things.

When I worked in gynae we sometimes used lidocaine patches for endometriosis pain, they are not licenced and mainly used for post hepatic neuralgia but one of the gp's was willing to try them for me as it meant he wasn't prescribing more opiates and I'd become unable to take nsaids as I was developing Crohn's.

I don't know if I have said anything you haven't already thought of but I hope your appointment goes well and you get the pain relief you need.

Take care x