Update

[TeaandToast94]

Thank you everyone who sent well wishes for my appointment on Wednesday!

Wanted to send an update as I’m not quite sure how I feel it went. So I sent my rheum a letter detailing that I feel I’m deteriorating, had my first GU sore in over a year again, severe joint pain in my hands affecting daily life etc gabapentin not working… so he slotted me in for a cancellation.

So he said he had read my letter and reiterated his thoughts that it was likely nothing and ‘just’ fibromyalgia. I went through again all the points in my letter but it didn’t seem to make much difference.

So I then said “as a consultant rheumatologist, are you seriously telling me that you disagree that people can have seronegative conditions?” and there was an awkward pause when he said “I know you’re medical good so surely you understand I’m not going to treat what isn’t there” to which I said something along the lines of how can you tell me there isn’t anything there when I have a mouth full of ulcers, I’ve had a GU sore, fatigue, joint pain, chest pain when I’m in a flare etc to the point where I’m considering whether I can carry on doing my job anymore.

He then decided he wants me to have ultrasound of my hands and wrists so that when they come back negative he can say it’s nothing involving rheumatology. He honestly said “you don’t want to have any condition that requires rheumatology, trust me!” And I responded “to be quite honest I don’t care what I have as long as i finally get appropriate treatment”

He then said he really thinks a referral to Behçets centre of excellence is warranted due to oral and GU sores plus random patches of acne like spots. However he wants my GP to put this referral in, and I don’t wish to be rude but my GP won’t even give me a telephone consult to discuss my ongoing concerns! So I have no clue how long it will take til I’m seen at the behcets centre. In the same thought I’m questioning if he seriously thinks there is nothing wrong with me, then why does he want me referred there? So I feel very conflicted and just annoyed with this lack of care.

This morning I woke up with my nose feeling sore, didn’t think much of it but checked earlier this evening and I have 2 nasal ulcers too! This is something I’ve never had in my life! I am just so fed up with this back and forth.

I’m considering getting the ultrasounds then taking all my results and investigations to another rheum who consults at my hospital and has in his bio that he is passionate about early treatment for best results.

Anyway, sorry for the rant but I know people were asking for an update and I feel better for having shared all that with people who understand.

On a good note, my ‘indoor’ garden (a few flowers and succulents) is absolutely blooming, so much so I may have to trim some of it back!

[Hidden]

I felt bad for liking this. Wish you had my rheumi - she’s fab. GloomyEeyore posted recently here about finally getting a diagnosis of Behcets after many years of fob off. Hang in there and be very firm with your GP if you possibly can. X

PS I get mouth and nasal ulcers but not GU ones as far as I’m aware. I have Sjögren’s and systemic sclerosis overlap and likely some anca negative Vasculitis relating to this overlap. I believe the GU ones are fairly specific to Behcets so maybe they would biopsy these for you?

[TeaandToast94 in reply to Hidden]

That’s ok! Ah how interesting, I have found the behcets group on here and think I’ll write a post asking what to expect if I do end up getting an appointment there. I just don’t want to go if they’re going to say it’s nothing also, but yes GU are very specific to behcets. I used to get them quite often but now more rarely so I don’t know how id go about getting one biopsied if one did flare up again? I’m willing to do or try anything at this point.The mouth ulcers are certainly one of my worst symptoms. They’re so uncomfortable and often put me off my food as I just get frustrated whilst eating that it hurts so much! Thanks so much for your support

[svfarmer]

I’m so sorry that your appointment didn’t go well and that you are in a lot of pain, I think the only thing you can do is see a different rheumatologist as this one is clearly very uncaring - I really hope you get an appointment through soon from the Behcets centre.

I get nasal ulcers they are so painful so I really do sympathise with you.

It’s good to have a rant and let off steam. Sending big hugs to you 🤗❤️

[TeaandToast94 in reply to svfarmer]

Thank you for your support! I’m going to be chasing GP for the referral today and hopefully they will be happy to do it for me

[svfarmer in reply to TeaandToast94]

🤗😘

[Cowsaresweet]

Sorry to hear of your experience, for years I didn't have a diagnosis so I appreciate how frustrating it can be. I expect you have already seen this but having had mouth and nasal ulcers in the past and no more I thought I would repeat it. There is a great leaflet by Lupus Uk on these. Key for me for my mouth ulcers was having toothpaste and mouth wash that didn't have Sodium Lauryl Sulfate in them. For the nasal ulcers I have been prescribed Flixonase 0.05% two sprays twice a day and that has done the trick. Neither might help you but thought it was worth mentioning. I hope your new appointment comes through soon.

[TeaandToast94 in reply to Cowsaresweet]

Thank you, yes the back and forth is exhausting and the mixed messages “there’s nothing wrong with you” and then in the same breath “but I think you should be referred to behcets centre” I would rather if my rheum didn’t know to admit that he doesn’t know, but that we need a 2nd opinion. I’ve been using SLS free toothpaste for years. Before the change I used to get up to 8-10 ulcers at a time, since changing I still have multiple at a time but not quite so many and some don’t last as long as they used to

[CecilyParsley]

It sounds depressingly familiar to me sadly. I am still on the yo yo diagnosing 12 years on from being ill. I took ages to come to terms with being told I had Lupus and then was told it is not Lupus you have Bechets and Fibro. Then you have low grade Lymphoma and an approximate survival rate of 4 years. Then no it’s Lupus. Then not Lupus but UCTD. Then Fibro and “ hysteria”, followed by MCTD and UCTD. Currently the newest Rheumy is thinking Bechets but has not even seen me.If I were you I would jump at the chance of a referral to a Bechets Centre of Excellence. I have heard some very positive accounts of how thorough and caring they are. Ring you GP every day until they do it for you. I do empathise with your GU they make me cry, so painful. I have had four flares two lasting four weeks each. I took Colchicine during my third flare and the GU went in just nine days. The fourth flare came and went in five days. It is killing my tummy but I am trying to persevere with lots of Gaviscon. Good luck xxx

[TeaandToast94 in reply to CecilyParsley]

Thank you Cecily! I took my time replying to this as it really struck a chord. Your journey sounds so painfully long and at times downright insulting “hysteria”. I have had a few doctors on my journey say to me “it sounds like what you really need is just a good rest!” And one who said “if I could prescribe you 2 weeks off to sit in the garden then I would do!”

Sadly, the identifying gender of the doctor also doesn’t really matter as I’ve had pathetic comments like the above from a fair share of women as well as men.

Yes the GU ulcers are absolutely awful aren’t they. Thankfully I don’t get them much anymore but my mouth is always riddled.

After my consult I spent a lot of time reading about behcets and the NHS website actually stated that women may find sex painful when they have GU ulcers. I honestly thought who on earth is able to have sex with them?! I’m reduced to tears to just pass urine, my husband isn’t even allowed to glance at me unless I’m absolutely confident the sore is gone 😂😂😂

I’m trying to get hold of my GP for the referral as the more I’ve looked into it it’s really struck me, sensitive skin, headaches, feeling ill a lot of the time, I also get floaters in my vision and migraine aura a lot of the time which has recently become daily… and I often have nausea and upset stomach for no apparent reason. So maybe we are on to something here.

It just feels like every day without a diagnosis or proper meds is a day wasted on getting better. Next year will be 20 years for me, maybe I’ll have a party 😂

[CecilyParsley in reply to TeaandToast94]

I agree completely, the patronising fobbing off and insults I have received from some doctors is disgraceful. Most of my bad consultations have been from males. One Urology registrar told me I was getting UTI’s because of the amount of fat between my legs!! I have become worn down and less able to fight back over the years it is so tiring. Is it too much to ask that we are treated with respect and dignity? Oh I am with you 100% sex with blisters not a chance in hell. I actually was so swollen with the first two flares this year that I struggled to pass urine and when I did I would have to use a syringe of Instillagel to numb the pain.

Have you tried the three in one mouthwash? My newest Rheumy prescribed a years worth. It is soluble prednisalone, soluble antibiotic and Nystatin . You mix the three in water and rinse your mouth with it three times a day. It really does ease the pain and heals them quicker. Good luck with your GP. Please let me know how you get on xxx

[Krazykat26 in reply to TeaandToast94]

I guarantee that if a fella had GU it would cool his amorous intentions!! 😹🌈😽😽Xx

[Pumpkin2009]

I just want to say I am sorry you are being treated so terribly and don't give up. I will never understand why some of these uncaring people become doctors. Hang in there.

Healing hugs.

[TeaandToast94 in reply to Pumpkin2009]

Thank you so much for your support. Of course there are some fantastic doctors out there but I can tell that this one sees me as a hysterical time waster. Next year will be 20 years of the start of these symptoms, I just want a comfortable life!

[Krazykat26]

I think u said it in your post Tea n Toast 🤗I love that..it rhymes!! 😹What I mean is that u have a mind to get the ultrasound results n then seen the rheumy who is lupus savvy!! This one that you've seen clearly isn't 😤

I agree that might be the best plan with moving through all this stuff!!

Don't lose heart..you've clearly got symptoms of 'whatever it is' n you need treatment. Keep on keeping on.

Anyway part of the process is starting a person on meds to see if they respond which can further indicate lupus regardless of bloods as I understand it? Either way you don't trust this guy so I'd say dump him n seek second opinion!! 🌈😽😽Xx

[TeaandToast94 in reply to Krazykat26]

Sometimes that’s the answer to everything KrazyKat, dump him 😂😂Thank you for your support! I’m really not ‘bothered’ about it being lupus or not but whatever this is I just want to feel better.

I’m going to push for a behcets centre referral to see what they have to say and then perhaps seek a second opinion from there if there’s still no answers. However don’t know what the turnaround time is from referral to initial consult at the moment. But I feel a different rheum may be inclined to say the same things if I haven’t explored all avenues first! Xx