Systemic Vasculitis

I think the thing to say, I’ve written down some thoughts about it, [laughs] it is very complicated so it is hard to know where to start, but I think the thing to say first is that before I was diagnosed, I had some experiences that I now recognise as being leading up to the vasculitis diagnosis, but none of them were ones that you would really take a lot of notice, I had odd days where I was completely exhausted, and I had, I had days when – oh, I had a sore nose, [holds nose] that’s right. And it was just so minor that it didn’t seem worth bothering the doctor about. And then I did get a really runny nose, and I was at the doctor with something else and I said, you know, “This runny nose is a bit of a problem, and it doesn’t seem to go away. And I haven’t got a cold.” He said, “Oh, well, have some Beconase,” so I had that and that didn’t make any difference.

And so, when it started really kicking off, I had no idea, you know, what was happening to me.

So, I was first diagnosed with vasculitis in November of 2015 when I was 19 years old. I was in my start of my second year of university I was in a History of Art degree, and I went from being unwell with first my initial symptoms to then actually being diagnosed within about four weeks’ time. So, it was quite a short length of time that I was actually unwell to then finally being diagnosed.

I kind of initially when I was first unwell it was very strange, I basically started off with having pains in my arms and I tend to describe the pain as being it sort of felt like, like my bones were aching and this slowly moved from my arms into my hips and my legs and my feet and it sort of progressively got more and more painful to walk, and when I was sitting down in lectures, for example, I would get up after an hour of sitting down and I could, I could barely walk and it was a struggle to walk to and from lectures, I was visibly walking with a limp, and it was obviously very strange at the time, I was like, “This is, this is strange, I’m 19 years old, what’s going on here? This shouldn’t be happening.”

So, I think the first thing that I did was I went to a walk-in centre at the hospital because it was a Friday afternoon where it was, it was becoming to the point where it was incredibly painful and obviously the GPs aren’t open on a Friday afternoon, you can’t get an appointment Friday afternoon, so I thought, “This can’t really wait until after the weekend.”

Right, well, [sighs] I've only been diagnosed with the Behçet, Behçet’s, I always pronounce it wrong. I think it was about 2011-ish that I finally got a diagnosis. I’d suffered with just diabolical mouth ulcers since probably my early to mid-20s. 365 days a year I would have a minimum of about 10 ulcers in my mouth, the roof of my mouth, my tongue, sometimes down my throat, it was just awful. And I just lived with it.

And then as I got older it got worse. The, I just, it was really, really bad. And I went to my doctor one day and, and I said to her, I said, “Look, I just…” because they were all down my throat, I could barely swallow. I said, “I can’t live with this anymore.” And she was beyond useless. She sat probably as far away as that wall is, shone a torch in my mouth and said, “Ooh yes,” she said, “The best thing for that is Corsodyl mouth wash. So, I’ll give you a prescription.” And I just looked at her and I said, “Corsodyl mouth wash?” and I tore the prescription up and I walked out. And I was in tears.

Anyway, I had an appointment with my dentist, just for a routine check-up and he had often commented on the amount of ulcers that I had. And this was only two or three days after I’d seen the doctor and I, he looked, took one look in my mouth and he said, “My god,” he said, “You've got to see your doctor.” I said, “Well, I just have.” Relayed the story. And he said, “Well, you can’t go on with this,” he said, “I will refer you.” So, to this day, I’m probably the only person on this planet who says that I do love my dentist [laughs]. Because if it hadn’t been for him, I would still be suffering.

[Tearful] And when I reflect on that now, I think what it was and what was so important to me, was that people believed me. That belief in me and my symptoms, because it was really hard for me to believe in them. Because what degree of arrogance did I need to think that I knew better than these medical professions that I’d seen? So, to keep that when the little voice in the back of my head was telling me that, that, you know, “Just say none of this is real, Lynn, just say you have manufactured this.” So that wee voice at the back of my head was there anyway, and to hear that from people, was, was absolutely devastating. And where do you go with that?

So, after that, after the thing with the psychiatrist and my rheumatologist saying that, I went to see my GP and I took my husband with me. And. So my GP gave me 40 minutes that day, and what he said to me was, “Lynn,” he said, “I can think of less than five occasions in my whole career” – and he’d been a GP for about 30 to 40 years, he said, “Where I have said to a patient that their symptoms are psychosomatic and in their head,” and he said, “And I’ve made sure when I’ve said it, that I’ve been right.” He said the problem is very, very difficult to disprove. Because we talk about evidence-based medicine and whatever, don’t we? You don’t, you can’t get evidence, it’s like, people feel that they can say that to you when they, when they run the tests that they have at that moment in time, and think about things and whatever, and they can’t find an explanation of what happens to you, so therefore the default is - and the default may be more in females of a certain age because I was, you know, when all this started I was perimenopausal and then, you know, I was menopausal at that time, you know? So, females of a certain age or just females, that it’s okay to say yes, this is - “Essentially, this is in your head,” without evidence to back that up, or evidence, just, “Our tests are negative, and we can’t explain this,” and that becomes the evidence. And how do you dispute that?

And you know, and I said to my GP at the time, “If there is any way that I could live with my symptoms, I would,” because I’d need to be a masochist to put myself through this, to keep on searching for answers, to go and see people, to go and have these consultations.

Well, I was interested when you were earlier, speaking about it and quite often it sounded as if you had to be quite assertive? You know, you said, “It was only after I demanded a certain thing,” you know, whether it was a biopsy or a second opinion.

Yeah, yeah. Well, I knew nobody was listening to me, and I knew I, I was deteriorating. Yeah, if I hadn’t demanded this biopsy - although my nose had collapsed by then so maybe they would’ve eventually have come to a diagnosis. Because it is a process of elimination, isn’t it, with all these diseases and they have to get, do these first before they make that decision.

So, it’s very hard. You know I was annoyed with my doctors, furious with my doctors, that they’d misdiagnosed me for two years. And it was only that I asked to be put through to the ENT department as well. You know, after two years of being ill. So yeah, I had to demand everything all the way through really.

And I think, you know, when you go now you have to take notes and you have to research what it is, you know, I think you’ve got to be pretty clued up now, but I think that’s the same for anyone now when they go for a hospital appointment, that they know what they want to say and what they want to ask and go for a second opinion if you’re not happy with that.

I find it very hard to trust doctors now, which is why I acted so quickly when my daughter started to develop ENT symptoms. And I find it very hard to let my kids go to doctors appointments on their own. “Did you ask this? Did you ask that?” you know [laughs]. Very hard.

[Laughs] I wondered what on earth had happened to me. Just all of a sudden, my husband had to help me to get out of bed. It was like polymyalgia. And I was really, was very sore, [laughs] so I managed to get a quick appointment at the surgery, and I got a young doctor, I think just starting. And she thought it was that and she said, “I’m going to get the senior doctor to have a look at you.” So, she passed me on to the senior doctor in the practice. And he agreed that steroids, which she had suggested, was the right thing to do.

So, I attended him every week, I had to get blood tests taken and he was watching the inflammation on the computer. And the steroids, oh quickly got rid of the pain, it was very good. But I was left with headaches. Every night, I was sitting up with headaches.

So after, I think it was four, five weeks, he said, “I’m going to get the local hospital, I’m going to refer you down there.” So, I got a quick appointment, that quick I said to him, “I think I’ve got a cancellation [laughs], I’m going in Monday. Nine o’clock.” He says, “No, I asked for the urgent appointment for you.”

So, I saw the consultant and she immediately gave me a scan, so that was done right away, and I had a consultation with her.

Yeah, and eventually found a therapist that I did like and things started improving with my mental health, and this therapist wrote a very, very strongly worded letter to my GP who had sort of been ignoring me for years, and wrote a list of all the things that I’d had to change in my life, and that I felt I couldn’t do anymore, and sort of the impact it’s having on me, and that it was not fair that I didn’t feel listened to, that sort of even if medical professionals couldn’t do anything I should’ve at least felt some sort of empathy from them, which I didn’t at the time.

Yeah, so my GP got this letter, and sort of the result from that was a long list of referrals to different consultants, so sort of gastroenterology, gynaecology, rheumatology, sort of the full list, because the other issue is that we didn’t really know what system these things belonged to?

I was starting to get my first genital ulcers at the time, so whereas before it was all sort of, “Go to your dentist, go to your dentist,” it was suddenly, “Oh, maybe this is dermatological.” Yeah, so that, that was sort of the first time that I was taken seriously, and something actually came of it in terms of my care. Obviously, the dental hospital were great but they mostly gave me topical stuff, which didn’t really help.

So, some things came and went like dermatology. They, they had some useful ideas like, spraying asthma inhalers on the sores, as sort of a steroid treatment, which is quite creative, but it was sort of, “We don’t know what this issue is, we don’t think it’s to do with us,” and sort of passed me on to the next person.

I had an endoscopy and a colonoscopy, again, didn’t show anything, sort of, it’s not a gastro issue, so I was passed on to the next person. Eventually sort of the buck landed with rheumatology, and my first experience of rheumatology was really not positive. And by this point I was regularly seeing the dental hospital and I was talking a lot to the consultant there and he told me about this illness called Behcet’s syndrome, that might suggest the sort of the link between the mouth ulcers I was getting and the genital ulcers I was getting.

Well, basically, it started, I would say, around 2014. When I was getting symptoms, more so of head pain, kind of in the right side but, which, turned up it was, it was sinusitis. And there was kind of ongoing ear problems, I had grommets and T-tubes fitted just to try and, it was all kind of linked with the ear, nose and throat, so.

I was back and fore a few times to a private hospital. And, and to deal with the sinusitis side of things. Which, they were draining the sinuses, I believe, and it was helping, kind of temporarily, maybe for, maybe four to six weeks. But then there was always a reoccurrence, reoccurrence. And this went on, like I say, for probably three to four years if not longer, but we’ll say about three to four years.

And, then from there, things kind of, in-between then, I was up still constantly going to work but it was quite it was, I would say it was genuinely quite hard but I was doing my work, but I, I did feel –in-between this, I just kind of felt lifeless, just quite fatigue.

So, so trying to get on with it was quite, was quite annoying. It wouldn’t just happen, as in, it was constantly there. And it wasn’t just something that came on, like, when I wasn’t doing something I enjoyed. Because I remember being on family holidays even, things like that, and even, maybe things like at a water park and I said, “I have to go home,” to try and just, to get, like, I thought about daylight, I went through loads of different scenarios in my head, thinking, “Is, is it daylight? Is it things that were just triggering my sore head?” but we couldn’t get to the bottom of it, really, so. But then it moved on, and in 2018 when I got diagnosed, it actually came from my right eye was, was closing over, which prompted me to go to my local GP.

And then from there I got taken into the hospital in [city], obviously, and they kind of, they picked it up from there, I believe, just from a blood test.

So it went, it basically went like that, and from there the, I was in hospital for around, I think it was just shy of three weeks, they were doing loads of different tests and things like that, but, and then obviously they confirmed it was vasculitis.

I then got referred to dermatology, this was a good few years into it, and they did a skin biopsy on a bit that there was the rash, I think it was a punch biopsy? And it came back that it was eczema. So, I’m not sure, the doctor said that he thought it was just eczema and I needed to put creams on, but I knew that there was something different because when I get this rash, it would be almost like a demon was in my body, kind of. It would be hot, it would be, like, it wasn’t itchy to touch, it was sore to touch as in, like, like a bruise, and it would stay for days. Like, the rash would go down but then I would be left with, like, just bruising.

So, this went on for about four years. It was never something I did, I could never pinpoint exactly why it was doing that. And then I got referred to a different dermatology in a different area and I went to see him, and he, I showed him all the pictures because, like, throughout my journey I would take pictures of it so that, like, I knew that it wasn’t eczema. Like, I’d had eczema for my whole life and it’s completely different. Like, you could put creams on, you could do anything, and it wouldn’t take it away? It seemed to hit every single part of my body before it would go away, like, it would start on one bit and then go right through me, and then once it had hit every single bit of my body, it would go. So, he, as soon as I got there, he said to me, “I think it’s urticarial vasculitis you have.” And my mum’s actually a nurse, and she had said all along, “I think that’s what you’ve got,” because we obviously did our own research. But it took this one dermatologist to say, “No, I think this is what you’ve got.”

I think one example was, for me, at early stages of having different symptoms that were seeming quite acute and overt and more than that you would expect for someone with an infection. And I went into my GP surgery and was seen by a advanced nurse and it was a really important point for me because she looked, observed these symptoms and thought that something really clearly seemed wrong here, in that the repeated appointments - numerous, numerous appointments at the GP surgery with different doctors - were just going nowhere and, really, clearly something else had to be done. So.

She made a very in-depth evaluation of all the symptoms over about 45 minutes and then after that, she then, while I was in the room, was calling up the hospital and the specific department and was then explaining these things through and saying, “I really think that there’s something funny going on here, please could you, kind of let, could you allow it, kind of bring him in this afternoon, and to be to take all the paperwork that I’ve done and then kind of see what you think about this.”