HA and doctors not taking me seriously? What do I do now?

[candy_floss]

I'm sorry to keep boring everybody with the same story but I am really concerned now and don't know what to do to make the doctors listen to me?
To cut a long story short, I've had painless swelling lymph nodes behind my ear since February time. They've been seen by countless doctors who have said they are fine - small, moveable, soft etc. Blood tests were also normal. But recently the lymph nodes in my neck have started to swell too. There is 2 on one side and one on the other side. Again, all soft and moveable but they have absoloutely no reason to be there at all. When I visited the doctor about this, she wasn't concerned. Again I got told that cancerous lymph nodes feel hard and rubbery and mine are nothing like that. So I asked her why they were swelling and she said she had no idea but it was noting to worry about. She sent me away with instructions not to come back for at least another 2 weeks (at this point I was in the doctors about twice a week!) and to get a hold of my HA.

So I rang and made an appointment for three weeks in advance, thinking that this would show the doctors that I am giving the lymph nodes time to settle down and I am trying to reduce the amount of doctors appointments I make. During these 3 weeks, I contacted the centre where I was due to start my CBT and tried to get a sooner appointment. I also continued to take my Citolapram tablets and read my Health Anxiety help book. I thought I was doing well and that the doctors would recognise the effort I was making. They didn't...
When I went back for my appointment three weeks later, my doctor once again told me I was ruining my life with this obsession. I pointed out that the lumps are actually there and that I am not imagining them :weep:. She agreed that yes they were there but nothing nasty because they moved. So I ask again what is causing this and she says it's probably me poking them! I thought this was really unfair because I have gotten a lot better with the self examination and poking recently. I had not prodded these lymph nodes in over 3 weeks. And anyway lymph nodes do not swell up just from self examination alone, there is always a reason. She reluctantly carried out another examination and told me that I had another weird lump by my armpit now but not to worry because it's probably just an ingrown hair :weep:. I was sent away again feeling like a total idiot, now worrying about my armpit lump too and with no idea what to do next?

I am waiting longer between booking doctors appointments. I am still chasing up my CBT. I've cut down on self examination and I'm taking my medicine. I am doing everything the doctors want me to do yet still I am treated like some kind of nutcase. I now feel embarrassed going to the doctors and have to beg them to examine me most of the time because they always seem to want to discuss my anxiety rather than my symptoms.
I've also been to NHS Direct twice now and was treated the same way. I just don't know where else to turn. This has been going on since February and I'm wondering how many more lymph nodes need to swell before they start to actually listen to me?
What would you do in my position? I feel like there is no one left to talk to :weep:.

[joy]

Think I would right to the prctice manager nd explain whats happening. As far as i KNOW gpS cant refuse to see you.You can insist on being referred to specialist. Obviously the GPs dont think its anything serious but nevertheless the lumps shouldnt be there. You could also visit the outof hours drs.

Joy

[TheGroundhog]

I feel for you I really do but I think you have to listen to your gp. Then I think you have to do what I was made to do when I first started CBT for health anxiety and that's wait for three months before you see a gp with a new problem.

Yes, really three months. If they are still troubling you then, then go back.

In the meantime don't touch them don't look at them, don't google, don't talk about them, nothing. Three months.

It's tough, tough love, and when we were told this as a group in CBT we were all in turns incredulous, amused and pretty p*ssed off, to be honest, but those of us who did the therapy gradually started to get better, those who kept on with their old behaviours didn't.

I used to really worry as I have very odd feeling glands behind my jaw, one was nearly always swollen and hard, I also had a couple of odd ones in my neck. Are they still like that? I don't know because I don't check them, have I got any knew ones? No idea, but I'm not going to look.

It sounds from your post like you already have some idea of the things that you should be doing before you even start therapy. However much it increases your anxiety you need to stop badgering your doctor, you have been told they are okay, everytime you go back you are just making yourself worse.

Good luck.

[candy_floss]

Think I would right to the prctice manager nd explain whats happening. As far as i KNOW gpS cant refuse to see you.You can insist on being referred to specialist. Obviously the GPs dont think its anything serious but nevertheless the lumps shouldnt be there. You could also visit the outof hours drs.

Joy

They are not refusing to see me exactly, just being quite short and dismissive with me whenever I do go, to the point where I feel like I'm never given a proper examination anymore.
I honestly feel I am dismissed so many times because of HA but I know my own body and I've been right before. For example, I was bleeding none stop from December 'til March time and all my doctors told me it was 'normal'. I knew it wasn't and begged for a scan which they eventually agreed to. The scan showed my ovaries were covered in cysts and I now have a diagnosis of suspected Polycystic ovarires. I feel the same now, that something clearly isn't right and I do have actual, physical lumps that they can see and feel but that's not enough for them to take me seriously? I don't know what is :weep:.
How would you go about obtaining a referral to a specialist? My last doctor told me in no uncertain terms that there would be no hospital referrals for me because I am 'well'.



I feel for you I really do but I think you have to listen to your gp. Then I think you have to do what I was made to do when I first started CBT for health anxiety and that's wait for three months before you see a gp with a new problem.

Yes, really three months. If they are still troubling you then, then go back.

In the meantime don't touch them don't look at them, don't google, don't talk about them, nothing. Three months.

It's tough, tough love, and when we were told this as a group in CBT we were all in turns incredulous, amused and pretty p*ssed off, to be honest, but those of us who did the therapy gradually started to get better, those who kept on with their old behaviours didn't.

I used to really worry as I have very odd feeling glands behind my jaw, one was nearly always swollen and hard, I also had a couple of odd ones in my neck. Are they still like that? I don't know because I don't check them, have I got any knew ones? No idea, but I'm not going to look.

It sounds from your post like you already have some idea of the things that you should be doing before you even start therapy. However much it increases your anxiety you need to stop badgering your doctor, you have been told they are okay, everytime you go back you are just making yourself worse.

Good luck.

Thank you for your post :).
I've been a lot better with the self examination recently, it's just very hard to avoid because I am thin. The last node I felt in my neck, I wasn't even looking for. I simply raised my hand to rub it because it ached and that's when I felt the lymph node. The one under my armpit I had no idea about until my GP said. I thought this would prove that I had been self examining less but she still blamed me for it. There was a point where I couldn't go an hour without checking for lumps. Now it's several weeks. I honestly though the doctors would take me more seriously once they saw how much better I've become at managing my Health Anxiety but they just treat me in the same dismiisive manner and I think this is unfair.
Waiting three months does seem a bit much doesn't it? :ohmy:. But considering my glands have been swollen since Februray, they cannot say that I haven't given them time to settle. I have and they are not going away :weep:.
So do you think the 3 month rule would still apply if someone has had the symptoms for 3 months already?

Well done on being able to cut down on your neck and jaw nodes by the way. I know it's very hard, especially when you know they are swollen/don't like the feel of them.

[TheGroundhog]

What would you need to make you feel better? Do you have a good relationship with your gp?

I aks because you have had them checked numerous times and had blood work done, you have been told it is nothing sinister but you clearly want more. Would another gps opinion be enough, or do you want to see a specialist? If the specialist sees you, has a quick check, then dismisses you and says it is nothing, will you believe them or will you still think that you are right and they are wrong?

I agree if you had found them in February then it is three months but you have already been told there is nothing to worry about.

Another thing we had to do with CBT was if we had a symptom that we were still worried about after the 3 month rule, we were allowed to visit a gp to ask about that symptom and that symptom alone, if the gp said it was nothing, then that was it. No more visits, no second opinions, nothing.

I know it is hard as you hear terrible stories about people being misdiagnosed and you have obviously had a recent exprience of it, but at the end of the day you have health anxiety, you have to break the cycle, the position you are in now, HA poses a far greater threat to your well being than physical illness does.

[wlizzie]

just wondering as i read through this post could the swollen lymph nodes be related to the polycystic ovaries?

[candy_floss]

What would you need to make you feel better? Do you have a good relationship with your gp?

I aks because you have had them checked numerous times and had blood work done, you have been told it is nothing sinister but you clearly want more. Would another gps opinion be enough, or do you want to see a specialist? If the specialist sees you, has a quick check, then dismisses you and says it is nothing, will you believe them or will you still think that you are right and they are wrong?

I agree if you had found them in February then it is three months but you have already been told there is nothing to worry about.

Another thing we had to do with CBT was if we had a symptom that we were still worried about after the 3 month rule, we were allowed to visit a gp to ask about that symptom and that symptom alone, if the gp said it was nothing, then that was it. No more visits, no second opinions, nothing.

I know it is hard as you hear terrible stories about people being misdiagnosed and you have obviously had a recent exprience of it, but at the end of the day you have health anxiety, you have to break the cycle, the position you are in now, HA poses a far greater threat to your well being than physical illness does.

I would like to see a specialist and to be honest, I don't see why this is a big deal for my doctors to refer me for this? I've heard that a fine needle biopsy can be done on the node, which is very quick and easy to perform. This would show what is causing the swelling.
I also know someone who was offered a biopsy on ONE swollen lymph node that had only been there for a month. Mine have been there for months and haven't even decreased in size, let alone gone away. Do you think it's unreasonable for me at this point, to want to see a specialist? Because my doctors have already told me that they won't do this so I'm unsure of my next move and I'm scared to ask them again and I'm running out of doctors to visit, it's only a small surgery!

The lessons you are taught in CBT make a lot of sense and seem to really be helping you. I have been on the waiting list for ages now and every time I ring them, I'm told they will get back to me but never do. Maybe if I'd had my CBT by now, things wouldn't be so out of control :weep:.

---------- Post added at 18:21 ---------- Previous post was at 18:20 ----------


just wondering as i read through this post could the swollen lymph nodes be related to the polycystic ovaries?

Unfortunately, as far as I know, there is no link between PCOS and swollen lymph nodes.

[wlizzie]

you could always change to a different surgery, i know its not ideal but at least you might get a more sympathetic gp :hugs:

[candy_floss]

you could always change to a different surgery, i know its not ideal but at least you might get a more sympathetic gp :hugs:

I have thought about this too.
Just unsure of how to go about it exactly and scared of making things even worse for myself. Would I have to hand in a request to leave?
I went to NHS Direct thinking the nurses there may be a bit more sympathetic not knowing my full history of health anxiety but if anything, their attitudes were even worse than my GP's!

[wlizzie]

its very easy just walk into the surgery you have chosen and ask to register with them, then will automatically be taken off the register at your present gp.
I did this 4 times in the same town as i moved to slightly different areas so went to the most convenient. I assume its the same over the whole uk.
Good luck:)