Pain relief. How do advocate for myself?

[KM1986]

Hello lovely people. Wishing you a peaceful pain free day.I need some support on how to advocate for myself as I'm pretty useless.

I'm currently on the waiting list for a total hysterectomy for stage 4 and will be my 4th op.

I've been on strong opioid pain meds for 11 years using them to varying degrees depending on my level.

I've tried everything that's ever been offered but now I'm done. I'm so close to surgery i just want left alone until i can have my op.

However my GP is under pressure after 11 years to get me off these meds and I have an appointment with a chronic pain pharmacist next week who i will imagine stop my meds.

At this stage i can see no benefit when I'll hopefully be stopping them all post surgery anyway.

These meds help me live a semi normal life which otherwise I wouldn't be able to do i.e. work full time.

I really feel our pain gets dismissed and presumed it can't be that bad.

How do i stick up for myself?

In appointments i tend to just break down and do whatever I'm told. But i can't afford to do that this time.

I'm sick of feeling anxious, guilty, ashamed and embarrassed every time i need pain relief.

[Hooplove00]

Believe me when I say I’ve been there. I’ve actually posted quite a bit about the same situation. What I found, is to make a list of questions and symptoms before your appointments. I actually have a red folder that I bring with me labeled “appointments”. Make sure to have the list out so that the provider sees you are prepared.

If you can, bring someone with you. If not, just be persistent on expressing your state and pain. Advocating will be something we have to do ongoing and it’s so exhausting. But then I have to think that if I didn’t advocate for myself , that I wouldn’t have gotten my op, ect.

I would also follow-up by sending them a message( If you have a patient portal), so that everything is in writing . Doesn’t have to be crazy. Just a quick:” following up on last visit” “have you been able to review a,b,c” “since my last visit, I’ve been having these symptoms.”

What also has helped me is explaining that I want to do everything I can at home, so that I don’t end up in the ER wasting everyone’s time.

Hope that helps a bit and feel free to dm me!

Xx

[GreenViolin]

I really feel for you. I can see this from both sides as I’ve longed for stronger painkillers, and apart from briefly post surgery I’ve never been given anything stronger than Mefanamic acid before they turn to muscle relaxants / anti depressants instead and these have all triggered depression in me. When my endo is at its worse, there are no painkillers available to me that will touch it. I’ve had to explore other options such as pelvic physio, spinal blocks, psychology for pain management which work in very different ways to the immediate relief you get from opioids.

On the other hand, I work for an opioid manufacturer, and I know that long term use should be avoided at all costs because of the chances of getting hooked on them, and you only have to look at what’s happened in the US to see the devastation they can cause. Opioids can’t be prescribed for long term use now in the UK thankfully - they are for short term acute pain or end of life care only.

Your GP is doing what all GPs have been charged with doing to stop long term opioid use. There’s probably also another consideration for you in that if you’re already on the strong stuff prior to surgery, they’re not going to be able to help you with the really acute pain post surgery.

I don’t think healthcare practitioners all misunderstand or don’t care about the level of pain we have, it’s more that a lack of research into endo means there’s not a good enough understanding of what can help effectively without being detrimental in other ways.

I know that the above will be of little comfort, but I’d try to go to your appointment with the chronic pain pharmacist with an open mind, and perhaps see if you can be referred to a chronic pain specialist who has many other options to look at than medication.

[1Poppy1234]

Do you have anyone you can take with you? Sometimes support helps you be stronger. Also when I go for appointments I try to think of my worst pain and tell them how awful it is. It helps you focus on how awful you feel. Good luck.

[Ronsk]

Hi,

I had a total hysterectomy in October and its the best thing I have done..

In relation to pain meds I was on them since I was 22 and I'm now 41. During my discussion with the pain med specialist there was nothing more they could offer me as I'm on the maximum of everything I could take. I think generally they want you to take medications that will work for you. They cannot make you stop your medication.

[Cocoacupid]

hun I’m honestly just like you. As my body has got used to the meds am on I hardly have any relief now aparently my endo is wrapped all around pelvic nerves so I get sciatic pain and really bad groin pain plus my normal pain with my back hips and my stomach. I have cried to the doctors and also asked them if I can see a pain clinic doctor as I wanted to see if they can suggest anything while I’m waiting for a bowel resection and to unfreeze my pelvic organs . I even asked my doctors if they could expedite surgery as my symptoms are so cronic and at times I can’t work as my bowel symptoms have gotten more severe. All I’m told is they can bring my op forward as I need a colorectal surgeon and they only have two lists a month . I’ve rung kernow doc so many times and they said as I’m under professionals I need to speak to them . In the end I phoned up my consultants security to see if I could speak to the endo nurse specialist as I’m not coping well at all. Sometimes I feel like they want you to understand the pressure they are under and then on top of that tell you everyone else is in the same position and I have to be patient even though my symptoms have gotten more severe and then they blame it on Covid. I had my mri back in September no one has ever given me the results I just feel like you am not even listened too by the people you want to help you. At least my doctors a lot of them are very helpful to me . Sometimes I go doctors and break down as I’m really struggling not just physically but really mentally. My mum never believed I could suffer from pain to the point I am always in tears and thinks I put it on which is not the case. The pain clinic doctor said because of my other problems she has said she reckons I have fibromyalgia but at that meeting didn’t have time to do the symptom checklist . Am awaiting a diagnosis for high functioning autsim as well . And I did not like the mri at all it was so noisy and the music for distraction didn’t even drown out the noise it was like it was more of a hindrance. I feel like I have been left in the dark to suffer for at least another five or so months and am often told to suck it up as other people have needs as well . Hope you get some news soon hun . Don’t ever think your pain is not real I really don’t understand why professionals belittle people and make them out to be scape goats.

[carrie75]

Hello, I totally understand your situation. I really do.

I’m in a similar place: been on opioid painkillers for a few years which honestly help me to continue to work full time and do what I can at home, and lead a normal a life as I can.

I just had an appointment with a pain management clinic who want me off the tablets. I explained I had fibromyalgia, a total hysterectomy in 2022 but I’m now in pain again. The opinion was that it was all ‘nerve pain’. I was really upset after the appointment, I’d gone there with a hope I could get answers to why I was still in pain. I did manage to secure an MRI scan and minimal use of opioids, but to look at a tens machine for when I’m in pain at work with the severe back pain and spasms, bowel pain and pelvic pain and migraine.

One thing I’m not sure which might help is a new tens machine called ‘myoovi’ which is getting a lot of positive reviews. They’ve also just brought out a supplement specifically to help endometriosis symptoms. People are saying they’re able to reduce painkillers as the device is helping. This might help until your surgery date is confirmed and then afterwards as you start to recover, hopefully you’ll no longe need the painkillers. Wishing you all the very best, take care xxxx