Pain clinic - Waste of time

[AnnFox99]

Hello, just want to see if anyone had an experience like I had last week at my hospitals pain clinic:

My gynae referred me to the pain clinic to try some new pain relief to try and make the day-to-day easier. The doctor asked me about my life and my pain scales on the good and bad days. She then proceeded to do some tests moving cotton balls and pins up and down my stomach asking me whether it changed or stayed the same. I explained that the right side was more sensitive and that was where most of my pain localised, I showed her pictures of where the right side had swollen compared to the left. She then explained to me that my right side has been trained to believe anything it feels is pain.

She sat there for 30 minutes explaining to me that it was all in my head and my pain wasn’t real. After I’d stopped crying, I worked up the courage to say “So when my pain is so bad I’m sick, or can’t walk, or have to pull over the car and scream, that’s not real?” Her response was “No, it’s not, your brain is just telling you you’re in pain.”

She sent me away with an app, a podcast, a website and a book and told me to come back in a few months to see if it helps.

An absolute waste of my time and has left me in no better position to help my pain as I was in before I went.

[SavageGold]

I am devastated for you. Hugs 😭

[Lofty1589]

The pain clinic was terrible for me too. It was all “try these medications” and when I said they haven’t worked for me in the past, it was suddenly all “it must be in your head then” 🙄

[AnnFox99 in reply to Lofty1589]

Yes, she tried to prescribe me amitriptyline again even though I’ve had it twice before and I get more than enough sleep. When I tried to explain that I’m fine in the night but not in the day, it was “all in my head.” 🙄

It sucks but I’m glad it’s not just me that’s being told this.

[Lofty1589 in reply to AnnFox99]

I’ve found that if they don’t know what’s wrong, or if they don’t know what else to try, they instantly blame it on us and say we’re making it up. Frustrates me to no end.

[MrsPaddingtonBear]

In so sorry you’ve had an awful experience at the pain clinic. Sadly I’ve heard this scenario before. I too had a similar experience years ago for a different condition and was told it was all in my head. Thankfully I told them I wouldn’t be coming back, especially when they wanted me to travel miles away to the next county by bus then train taking over 3 hours and when I said I have to go my granddad was passing and they said I wasn’t committed!. It is NOT in your head, it is real. If they can’t respect what you are telling them, and showing them by way of photographs then they shouldn’t be treating you. There IS a condition called pain hypersensitivity, but it is no way in your head. It is a condition where the body perceives pain to be greater than what it is because it has been in pain so long it’s used to it being there and thinks it is when the cause has gone. Like when someone has a limb amputated due to pain from an accident etc and they still perceive pain ( hope that makes sense) But even if that is what they think there are ways of approaching that conversation without disrespecting people. This is obviously not me saying anything medical about what could be going or any way of an opinion about your situation, I’m totally understanding your pain issue. I too collapsed with pain on a dog walk, and have fainted many time due to heavy periods. It was just something I was told at a different clinic that was a better clinic. I hope you get respected a lot better at any future appointment.

[AnnFox99 in reply to MrsPaddingtonBear]

What a rough time, I’m sorry. It’s awful that these people think they can get away with telling us this. I hear the pain hypersensitivity which is why on my good days I still experience pain when I’m not swollen, but it was the fact that she was saying it was all the time that made me frustrated.

Hopefully they’ll get you sorted soon and they actually start listening! 🤞

[always_asleep]

Hi! Firstly I'm so sorry that you are experiencing this and that the dr treated you so poorly. Sending love. My situation may be slightly different but wondered if it may help in any way for reference, please ignore if not useful - I was dealing with chronic pain for 6 years before a really lovely doctor diagnosed it to be "vulvodynia" after years of being told it was in my head and feeling like I was going crazy, being told it's just my anxiety. I pushed and pushed and essentially made a nuisance of myself for another referral to a different gyno and finally got seen (2021) where I too was prescribed amitriptyline but didn't get on with it, so was prescribed Gabapentin and have been on it since. It doesn't totally get rid of the pain but has helped take the edge off after increasing dosages (though I don't want to be on this forever!)

Because my pain still hadn't got better from the first initial dose of gabapentin I was sent to a specialist vulva pain clinic (it took a year and a half for this so I was just seen this March) where within the first 5 mins of the consultation the Dr said it sounded like endometriosis. I have gone through months of battles since that appointment with the gyno who originally referred me to the pain clinic as he didn't believe it was endo and refused to give me a laparoscopy to confirm - I essentially wouldn't get off the phone until he had at least agreed to an MRI (reluctantly). Turns out I have a whole heap of deep infiltrating endo that is in my bowel and potentially on a nerve (causing the pain). It's still an ongoing process and it's so exhausting but if you have the energy and time please don't give up - I would suggest maybe writing a complaint. Sending good energy to you x

[Annabelannabel]

My endo specialist sent me to pain management and like you my left side was more swollen than my right and when pressing on my abdomen it really hurt in places and he said its not muscular so I can't give you an injection or help as it's organ based and basically sent me away. He wrote all this in a letter to the endo specialist and that was that useless. Will tell my gp on Monday. I don't want anymore injections already having zoladex. They clearly don't understand. It annoys me my appointment could have been more useful to someone else that would have needed it. Because I use tens machine heat and have anti inflammatories I'm all maxed out.

[Roellen]

Seriously 😳 Oh my goodness that is just desperate & just not acceptable. Maybe ask for a referral to a different clinic?

[scouterpuff]

Sad to hear what you've been going through, and I know how horrible you must have felt after she said that it was all in your head. I have been in your shoes. That said, I would try to find another doctor. It's my opinion that doctors who say that just don't know how to help you.

[Jen_dog]

I’m sorry you had such a bad experience. I had a great time with my pain clinic (well, relative to the situation!). I was given acupuncture, a tens machine, and prescribed top up pain relief: and importantly they wrote to my GP and told them to give me the pain relief I request, and not just send me away telling me to use a hot water bottle.

Maybe see if you can go to a different clinic or see a different doctor: although I would pay lip service to what they have suggested and go along with it in the meantime, if only to prove them wrong.

[Cailleach]

This is a really crap experience. She is saying you have chronic pain resulting from nerve pathways previously triggered that are still reacting even though there is now no physical cause (not all in your head, all in your nerves!)But I don’t know how she could know that unless you've been fully investigated by a specialist endo team including scans, laparoscopy etc and they have found no physical cause. I am assuming that is it not the case.

Your GP can actually prescribe everything a specialist pain clinic can, but sometimes they are reluctant to prescribe at higher doses. Worth pursuing it with them though to see if you can get something effective, or a combination of meds.

Has your Gynae been helpful, investigated the cause of your right-sided pain or offered treatment?

I had something of the same at the local pain clinic and in fact the consultant did that thing with the cotton wool etc, which she never explained and I didn’t know the reason for! However she was willing to prescribe medication for me, although she did go with the chronic pain/nerve pathways theory too, It is worth looking at the resources you were given as you might find useful strategies for dealing day to day with pain.

But going forward I would suggest that you go back to Gynae/ your GP or ask for referral to another gynae, all with the aim of getting investigation/diagnosis /treatment of the cause of your current pain Probably there will only be one pain clinic in your area, so you may need to forget about seeing another pain specialist.

Hope things improve,