let down and confused

Hi everyone just looking for some advise as feeling let down and confused.

I was diagnosed with Bechets 20 years ago with the following symptoms arthritis, genital and mouth ulcers. I am currently under a rheumatologist and dermatologist (who as interest in Bechets). In trying to get my treatment right the dermatologist referred me to the Liverpool Centre of Excellence. I have now attended two times and on my last visit took in photo's of my symptoms. The lead professor took one look at my genital ulcer photos and said they are not ulcers and straight away sent me to the gynacologist. He had a look and said they look like small cysts (he gave it a really long name which i cannot remember), he carried out an examination too. He advised that if I was his patient he would perform a vulva biopsy so see what they were exactly. He is writing it all up in notes to send back to my doctor.

I am left confused because these are the symptoms I have been getting in my vulva area for a long time but I have been classing them as ulcers. No one as checked when I have had them they just write it down that I have genital ulcers in my notes.The gynacologist at Liverpool couldn't believe that I had not been checked since my first diagnosis 20 years ago. I think the team at Liverpool are querying the Bechets diagnosis although not out-rightly saying it but instead saying at the moment I probably have Bechets and this is another issue running alongside it. We don't know exactly how long I have had it either which is concerning.

My question is to all you out there that suffer with genital ulcers is how often do you have them physical checked or do your doctors just go on what you say?

Any help and advise greatly appreciated

Thanks

Ps my name is Catherine (not gizzy but Catherine's all seem taken for logins)

[billi]

Hi, so I'm not going barmy!!! I've suffered with Behcets for 32 years. Due to my hubbies work travelled to Africa, Middle East and Asia. I also attended the Dental hospital in Liverpool with mouth ulcers, Eastman Dental hospital in London and some abroad. They said I had erythema multiforme. Then we came back to UK for good and I saw dermatologists then rheumaltologists ,with ulcers mouth, throat, lips, nose, back of legs, extreme fatigue as fevers with aching joints. It took another 5 years to get a Behcets diagnosis that's over 12 years in total. During this time nobody looked at the ulcers on my vagina and anus for another 2/3 years. Then I was sent to see Dr. Farida, the only female doctor I've seen and she saw them and ok photos but still was unsure they were to do with Behcets. Back with rheumatology I was put on Colchicine which worked very well for me and even though I has to stop using it after 6 years due to stomach bleed, I more or less have my BD under control. Fast forward another 10 years or so and I had another bad flare of vaginal ulcers, saw my rheumy ans for the first time he asks to see them. He said yes this is Behcets. About a month 6 months later I went to my GP for some meds and told her I still had some ulcers but they looked different. They were in exactly the same places that the ulcers were and the same amount. This time she reluctantly said oh I better have a look (this is a gp who knows nothing about BD) she said these aren't ulcers they look like the white fatty deposits people get around their eyes when they have high cholesterol. She sent forblood tests which came back absolutely fine. Now 18 months later I still have these and sometimes I forget about them but other times they go hard, red ad itchy. I mentioned again to her but she said oh stop worrying it's nothing. Does this sound familiar to you? My Centre of Excellence is in London and quite a journey but I don't want to go all that way wasting their time. Be interested in your answer and thoughts.

Billi

[Hidden in reply to billi]

Hi Billi

Thanks to your reply, the cysts i get below are red, sore and painful and bleed sometimes. I thought they were ulcers but apparently not, I think the gynecologist was a bit concerned that no one as examined me since first diagnosed and that's why I wanted to know how often other people had there ulcers looked at and checked. He gave me the name of the condition but should have asked him to write it down as now trying to find something more about it. Going to ask dermatology for a copy of my letters from Liverpool.

I have had red itchy spots on my feet too and got told these were part of bechets but now wondering if they are?

I am really pleased I went to Liverpool as seen more specialists there than my local hospital. The leading professor also thought I was on such a low dose of my medication that it wouldn't really be doing anything and that's why i am getting the mouth ulcers and what i thought were genital ulcers. The Liverpool centre is a two hour journey from me but was really glad of the referral by my dermatology doctor and they are still going to see me again in six months time.

[billi in reply to Hidden]

Thanks for getting back to me and I hope you will soon find out what the cysts. A tip for you.....if you have mouth, nose or vaginal/anus ulcers....most of us use a CLENIL inhaler. Best at the onset of a flare, a few puffs in the mouth then garlgle it round and then blow out, do not swallow at least 5 times a day until improvement then reduce puff amounts and number of doses. Good for down below also. And a nose spray just the same one or two sprays into nostril 2/3 times a day and then reducing. Also with ulcers below only wear loose cotton underwear, dab dry don't rub, loose clothes and depending upon your circumstances try not to wear underwear at night time. Hope this helps.

Billi

[Michja]

Billi, thank you for the information on the inhaler. My daughter and I suffer ulcers and I was trying to explain to her rheumy about the inhaler. She didn't know about it's use.

[B130859]

Exactly the same thing has happened to me when I saw proffesser Moots he has made an appointment for me to see the gynaecologist for when I see him again in May as he thinks my ulcers down below are gynae related not Bechets even tho I have been diagnosed and treated For Bechets and I also tested HLA B51 positive I did find Proffesser Moots brilliant and his team to be honest so I will await the outcome x

[julietoo]

Many doctors do not like to admit we have Behcet's, because there is no lab test. Doctors are VERY uncomfortable with clinical diagnosis. They rely strongly on test results, which is unfortunate when you have an unusual illness like ours that can only be clinically diagnosed. They don't want to commit to a diagnosis because they can't "prove" it. You are lucky if you've managed to get a diagnosis from even one doctor.

My diagnosis explains a lifetime of weird symptoms, and nothing else does, so it's pointless for a doctor to simply say he doesn't "think" it's Behcet's. I will listen when a doctor names the disease I DO have that is exactly like Behcet's, but isn't Behcet's. Until then, simple negation is unhelpful, so I don't pay attention to it.

Since my diagnosis, I don't bother seeing a doctor for any kind of lesion. I eat a very restricted diet to avoid food triggers; I take naltrexone which helps suppress lesions; and when a lesion pops up, I put either clear or Lugol's iodine on it (sometimes mixed with DMSO) and that helps it go away. I don't think anything else they have available will help any more than this does, and it will be riskier; so I'm sticking with this protocol for as long as it seems to work.

[ColdNoodleSoup in reply to julietoo]

Hi julietoo,

What does your very restricted diet entail? What foods do you find affect flares?

Thanks!

[julietoo in reply to ColdNoodleSoup]

Hi ColdNoodle, I first gave up grains and dairy and experienced quite a bit of improvement just from that. Then I went on a total elimination diet and felt even better. I haven't identified all my triggers yet, but it seems whenever I add back a new food I don't feel as good, so I stick to the safe basics which are meat/poultry/fish, green vegetables, squash, root vegetables (except potatoes), and small amounts of fruit. Boring, but effective.

I recommend this book, it's written by a doctor and explains in detail why people with autoimmune disorders should restrict their diet, why the things we love to eat make us sick: amzn.to/2mEwnHj This is the book that finally convinced me to give up my beloved peanuts (I never felt them triggering me, but apparently you don't need to feel it for it to be happening). So it's great stuff, she conveys complex material very simply and powerfully.

[Lively246]

Hi Everyone am in the Liverpool Clinic and I think the team here are amazing.

I get asked quit a lot to have a look when I get genital ulcers. The team are really good here and have access to the specialist nurse so when I am struggling there normally quite good to fit me in at the clinic. I have seen the gynaecologist here and they said I definitely had the ulcers, sounds embarrassing but I do have to take pictures sometimes and then show them in the clinic. I get a lot of really bad mouth ulcers to which I have had since I was a baby and had all kinds of treatments biopsies taken with Liverpool dental hospital. Was on last year I was diagnosed with Behcets. Despite changing to Azathioprine I still get some of my side effects more then others but I can only be on a low dose due to an already low immune system.