Anyone else been told the pain is in thei... - Endometriosis UK

Endometriosis UK

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Anyone else been told the pain is in their heads?

bbholloway88
bbholloway88

Just returned from seeing a GP at my local surgery, predominantly to get a sick note for work as I've been off due to my pain for the last three days.

Sadly I couldn't get my normal GP so I expected advice to be a bit of a long shot considering this GP didn't know me or read my notes in any detail before the consultation.

When we discussed different ways of alleviating pain, he suggested that it may be all in my head, and had I tried CBT (cognitive behavioural therapy). To be honest I found this response to be quite insulting.

I am a health professional myself and as such I do understand that tolerance to pain differs between individuals and that studies have shown links between mental attitude and pain but we were also taught that 'pain is what the patient says it is' so to told it's all in my head shocked me a bit.

On my good days, the pain is still there but I am able to work, to walk, to enjoy life and to generally have fun - I'm a naturally optimistic person. But on my bad days (like this last week), any movement is agony and the nausea and exhaustion are awful.

Has anyone else had this reaction from the health profession?

9 Replies

It sounds like your GP was really insensitive and didn't do a good job in helping you felt understood and supported today. I'm really sorry you had to experience this, especially when you're struggling so much. I think a big part of endo and any long term health condition is feeling not believed. It just goes with the territory unfortunately.

The GP maybe hasn't done the best job at explaining how CBT can help with pain management though. CBT or any psychological therapy or managing pain, is not implying that pain isn't real but it's instead meaning that how we respond to our pain can make it worse or can make it better- that's really what CBT is all about. By changing how we think about the pain (the C part) and how we respond to that (the B) it can break the cycle of pain so we experience it less. One of my worst symptoms is intense back pain- it can be quite overwhelming at times and my thoughts can go "oh no, it's getting worse" "I can't cope" "will it ever end" and I focus on in on it- looking for other signs of it building up and getting worse, which will mean that I will feel it more and more and my body will get more tense, likely causing me even more pain...a classic viscous cycle. I know that if I change my focus to my breath, it can help calm it all down. It doesn't mean it's all in my head, I'm just learning to change my focus in a way that helps me. CBT can be really helpful for pain management.

Hopefully this makes what the GP said sound a little less offensive.

BTW- I've found meditating much more helpful for my pain management.

x

I was misdiagnosed for a long time by my GP. She told me I had pulled a muscle and that with exercises, the pain would go away. I was so let down by my GP surgery that in the end, I went private because the pain was so unbearable that I didn’t care how much it was going to cost. I would put a complaint in, most definitely. That’s a ludicrous response from a health professional. Ludicrous.

Yes I was told that. Then they told me I had an addiction to prescribed pain medication.... I went private who diagnosed it within ten mins and said I was young to have it.

Mentally it’s very hard going

This is unfortunately what so many girls/women have to go through when dealing with pelvic pain or any sort of pain really. I myself told doctors since I was 10 years old that something was wrong and that my periods were way too heavy and painful but not a single doctor listened to me until just last year when I was 27 and by then it was so far advanced that I have been in chronic pain since last year.

Please don't let anyone tell you how you feel. I have called myself crazy and dramatic numerous times in those few moments during the day I feel okay, meaning that I let all of those doctors (and family/friends) get to my head when they would use the same words to describe me and my pain symptoms. It may take time, and many doctors but keep fighting for yourself and your health because you deserve a pain-free, healthy life. I hope this helps and I wish you the best!

Lou_EndoUk
Lou_EndoUkModerator

yes, i was sent away with Ibuprofen many times and told that it was normal period pain, even to the extent my family believed i had a low pain threshold. Until 1 doctor actually did an exam and felt my stomach she sent me straight for an ultrasound which showed a 9cm chocolate cyst on one ovary and a 7cm on the other. Then after i was diagnosed and taking morphine for the pain i was turned away from hospital and told to deal with my pain at home as i had pain killers and they wouldn't do anything else for me.

Before my hysterectomy my now ex-husband and mum both had discussions about how they thought i was going to have to go to rehab or the likes after my operation as they both thought i was addicted to the pain medication i was on. My ex-husbands exact word were that he couldn't understand how i could be taking pethidine and morphine and still be in pain, that it had to be in my head. After my operation i recovered only taking paracetamol and ibuprofen!

Before I was diagnosed, I once had a really intensive bout of pain that lasted for about 30 minutes, to the extent I couldn't get off the floor as I was in too much agony (and very unusual for me). I called my GP the next day and they asked if instead of coming in would I like a phone consultation. I said yes, thinking it would be with a GP at my surgery. When they called and I described my symptoms, the (male) person on the phone replied "Well, you know, sometimes periods can just hurt." I was gobsmacked that a male was telling me that at 30 years of age as if I wasn't aware of the difference.

Turns out it wasn't a doctor from my GP surgery, and once I made an appointment to see my GP they took my concerns seriously and sent me for a scan, where it was clearly evident I had a large cyst and needed surgery...

Even my recent gynaecologist couldn’t understand why I was in so much pain saying that as I had the Mirena coil in the Endo couldn’t have come back. He agreed to do what would be my fourth Laparoscopy (first time with that surgeon) and suddenly his attitude changed once he had my notes in front of him just before I went into surgery. Post surgery he came up to explain that I had quite severe Endo adhesions and cysts again, never mentioning the fact that he basically made me feel like a fraudster! To be honest I wasn’t going to let him go ahead with the surgery and wait a week for a surgeon I’d had previously, to be free, but I was in too much pain to wait and wanted to get back to work ASAP. It’s horrible not to be believed.

Hidden
Hidden

Poor you!

Can beat that though....My GP told me that the endo was in my head!

Pain, as you know, is what the patient says they feel. Don't see this GO again, some are so unenlightened it is scary!😜

Yes told it was in my head! Then to make it worse they told me I was a prescription drug addict..... I tried to take my own life because of it. I was 15 at the time my mum the next day paid for me to go private (very lucky to have this) I had a laparoscopy one week later to which they explained everything to me. Changed my life!

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