Suspected Bechets - affecting me mentally & physically

[TigerLily42]

Hello,

So sorry for the long post! So my doctor believes I have Bechets and I am currently undergoing tests/waiting for results. I have suffered with horrendous mouth ulcers ever since I had glandular fever at the age of 19 (now 36), and after a couple of years back and forth to the doctors about it, I was told it was something I would just have to deal with. So I did. My immune system is shocking and I pick up any cold/sore throat etc and also suffer badly with tonsillitis. I also get a lot of headaches and suffer with the occasional migraine.

About 6 years ago I developed genital ulcers and the doctor did some swabs for sti's etc. It came back that I was strep B positive (negative on all sti's) and that was that. Nothing more was done, and I just thought it was a one off.

However, since beginning of December last year the genital ulcers are back with full force! There's only been a 2 week period where I haven't had them. I went to the doctors and she straight away didn't think it was an sti, but also said it was unlike anything she had seen before. I also have the ulcers in my cervix. I was sent up to the hospital for an emergency appointment, who before even looking just told me I had herpes from what I had told them. Once they looked, they were unsure, but did sti tests/bloods/water samples etc and also put me on a 2 week waiting list to be seen quicker by a specialist. In the meantime they advised me to go to a sexual health clinic, which I did. Every single test I have had came back clear.

I had a colposcopy and biopsy just before Christmas and I am HPV positive with no abnormal cells. At the time, I wasn't showing any ulcers (typical). Mid January, the genital ulcers returned and I had to go back to my doctor's as I was struggling to even walk due to the severity of them. I had also started with hip and knee issues, it feels like my bones hurt/ache. That is when she mentioned Bechets.

It stopping me being able to live a normal life and I feel like it is now affecting my mental health too. I can't walk my dog very far at all, can't go to the gym and obviously sex/intimacy isn't happening due to mouth and genital ulcers. It's either one or the other, or both! I feel like my partner doesn't fully understand and isn't very supportive of everything that is going on, which is also adding to the stress.

I had a repeat colposcopy last week and luckily was displaying genital ulcers. They have taken a deep tissue biopsy and believe I have Bechets due to my current symptoms and medical history. I was just wondering if anyone could to tell me what the next steps will be? Dermatology and rheumatology have been mentioned, but I've been told I need to wait for the biopsy results to come back before anything else can be done, which the waiting is horrendous! Also if anyone has any advice on how to cope with everything that is going on, that would be great!

Again, so sorry for the long post, but I wasn't sure who to speak to/get advice from.

Thanks

[Icefire]

Hi Tiger Lily, I'm so sorry to hear all of what your going through. It sounds a lot like Bechets to me.

The pain from mouth and genital ulcers is horrific and people around you don't always understand because they can't see and feel it. The joint pains are not always visible, so we live with an invisible disease which is hideous for us but also frustrating for loved ones. The headaches are a bit scary sometimes and the fatigue is debilitating.

The Drs need to run ever test under the sun and 'accuse you' of having an STI a few times before they can rule out everything else and diagnose Bechets. My diagnosis also took over 20 years. There must be many suffering undiagnosed. It wasn't till my eyes flared with Uveitis and I got erythema nodosum that I was able to Google and be certain what it was followed by the GPs who where non commital and eventually Rheumatologist.

I have discovered that my symptoms are much reduced if I eat well, reduce startch sugar, increase green leafy veg and balance my blood sugar. I used a continuous glucose monitor to see which food spike me. (The glucose goddess is good read and she has lots of info on podcasts / website). The Zoe podcasts also gives info for free. I wish I could afford to take part in their study. (One lady told me she was off all meds following taking part in their programme but it's currently near enough £600!!)

I've also started to avoid all UPF food. Ultraprocessed, especially emulsifiers.

I used to use dermovate ointment (steroid) to manage vulval ulcers. But don't really get them now. (For now, Bechets likes to surprise you and change it up).

I exercise in some forms most days but start gently as it can send you into a flare doing to much. I take a multivitamin with Methylfolate in (not folic acid synthetic form) and this seems to reduce mouth ulcers.

My lifestyle changes have taken years to implicate, but it's worth it. Others prefer to ( or have to) take medication. Some get frustrated that the medications come with side effects.

Good luck, I hope you get to the bottom of it soon.

[TigerLily42 in reply to Icefire]

Hi Icefire,

Thanks so much for your reply. This is all very helpful information and I will be sure to check out everything you have mentioned.

I guess I have just got to be patient and keep going with all the tests until I can get a diagnosis! I have already had 3 lots of sti tests and every single one was clear. So hopefully no more of those! 20 years is a very long time, but it sounds like you know what works and what doesn't for you now.

From reading into Bechets, it sounds like it doesn't follow a particular pattern, so people learn what is best for them and their lifestyle, and I suppose that is what I will have to do! I'm just finding it a struggle not to be able to go on big walks with our dog, we usually go out at weekends for 5 mile + walks and I did used to go the gym 3 times a week. I haven't been able to do any of for over 2 months now, due to ulcers, the pain in my hips and knees, the fatigue. The fatigue is another level! I think people just think I am being lazy, but I am struggling so much with that as well!

Thanks again for your reply. This has really helped me.

[Icefire in reply to TigerLily42]

I just checked the cream I have. Its Dermovate ointment and now I rarely use it but don't like to be with out it. This was really helpful in the early years at managing vulval ulcers. As soon as I felt a sore bump, put the cream on twice a day. Might only need to do it once or twice and they go. You could ask your GP if you could try that while you wait? You might find these ulcers appear at a certain time in your cycle. I was hospitalised at 14 with them in the 90's before google. Every Dr and Med student took a look!!! I also couldn't walk or go to the loo.

I've abandoned the pill as it depletes methylfolate. I found this plus supplementing it to be useful for fatigue and mouth ulcers. Avoiding the starch was the biggest revelation. My body thinks potato and rice is the same as cake in terms of sugar. They raise my blood glucose levels to higher than the average person, which is known to cause vascular damage. All my 'intolerances' have resolved and now I keep starch to a small amount, once a day and try to time it with exercise. I have enough complexe carbohydrate from other veg for my needs. (I still love food and a one off hit of cheesecake etc is ok)

I'll chew anyone's ear off for days about nutrition. Good luck with it all. I'm sure you'll be back out with the dogs soon. It's been helpful to have a diagnosis but my aim was always to get to the route cause of the issue rather than medicate the symptoms. I had a big flair three years ago. The full shebang of uveitis, erythema nodosum, joint swelling and probably ulcers! I'm back up and running to a 5k distance with kids and a job. It took a while to recover but can be done.

While I think of it this was after tonsillitis and anti biotics. I think they wiped out my good bacterior with the bad. I took vsl3 probiotic followed by kefir and live yogurt. Previously to this I thought I couldn't tolerate dairy.

Anyway I'll stop babbling. Good luck. Dr Chaterjee also has a good podcast and some of his speakers have given useful tips.

[TigerLily42 in reply to Icefire]

Thank you so much for all the information, this is really helpful and has given me a lot to look into. Really appreciate it. Hopefully I don't have to wait much longer for the biopsy results and I can move on to the next tests and get closer to an official diagnosis!

[Icefire in reply to TigerLily42]

I'm glad it's useful, thanks for saying thanks. I think I often overwhelm people or they can't see a link between diet, lifestyle and health. Let me know how you get on.

[Matillymoo]

Hey TigerLily42, sorry to hear what a rough time you've been going through. Genital ulcers are the worst. Definitely agree with Icefire about the steroid ointment, i have found it makes them heal up much faster as well. It works best when you start applying it as soon as you feel the first stinging pain with the bump, like before it actually ulcerates and starts bleeding. Topical lignocaine helps with the pain too which is available over the counter at the pharmacy here in Australia. I get the 5%, i think that's the strongest. There's something called Magic Mouthwash for mouth ulcers too which is worth a google and you just need to see your GP for a script for that. Ulcers are absolute hell. Sending gentle hugs.

Also i completely relate to being an active fit person who has had to accept this stupid disease and the unpredictable nature of the way it flares up. I have a couple of family members who occasionally help me walk my dog when they can, but it's not enough compared to our long daily walks and it sucks not being able to enjoy that with her as much as we used to. My entire life has changed along with my body, a lot of loss to deal with, and there is a grieving process to go through for your old self and life when you become chronically ill. So i understand. Feel free to message me if you want to chat.

Also just want to say hang in there because i am sure there will be better days for you ahead. Once you get started on medication, hopefully without too much trial and error you can get some relief.

And lastly, i was in a relationship with an unsupportive (abusive) partner when my disease started kicking up a few notches about 5 years ago. After a lot of heartache, I left him. Not saying yours is the same at all! But i suggest asking your partner to invest some time into understanding Behcet's disease and their role in supporting you through your illness. Ask for what you need. If you can't prepare meals anymore, ask if they can step up. If you need them to hold your hand at appointments, tell them. If you need help walking the dog, talk about it. If they can't do it maybe they can arrange another friend or family member to help. If they love you it is not too much to ask for support during this difficult time in your life.

For me, it was easier to handle my illness alone rather than with someone unsupportive at my side, but i reiterate they were also abusive so ymmv. Perhaps your partner just needs to understand what you're going through a little better and be told explicitly what you need from them. There are plenty of fact sheets on the Behcet's UK website, there is a good podcast called "Rising From the Illness" that you could listen to together. There's even info and patient story type videos on youtube you could watch together. Sometimes just hearing other people's experiences with it is enough to understand. Disclaimer: none of that worked with my family, they are still pretty clueless about it and most of them don't care/ don't want to know 😄 i hope your support network comes through for you. You will need help and it is more than okay to ask for it. In the meantime you have the support of your fellow Behcet's peeps on here 😉❤️

[TigerLily42 in reply to Matillymoo]

Hi Matillymoo,

Thanks so much for your reply. It sounds like you have been through a lot too, so sorry to hear about it. And sorry to hear about the abusive relationship and your family not being supportive. I think it's more frustrating for my partner as we can't lead a "normal" life at the moment, such as going on our big walks together with our dog or just going out and about and doing day to say stuff, as I'm in pain with the genital ulcers and hip/knee pain and struggle to walk very far! I'm also so exhausted/fatigued to the point that I don't want to do anything and just need to rest. I don't think it helps as it isn't a pain that you can see is it! Also, being intimate is almost not existent currently due to the the constant genital ulcers (clearly grumpy cuz he can't get his leg over! Haha), but it's the last thing on my mind right now!

I will definitely see if I can get the steroid ointment. The only thing I have been prescribed so far is instillagel - which just numbs the area briefly, but doesn't help with the healing process. I will also have a Google of the other bits/podcasts you have suggested.

I am still learning and reading everything I can about Betchets, as it was only a couple of weeks ago that my doctor and the hospital suggested that it is this. Just need more tests and that before they can actually make a diagnosis. But looking back at my medical history, everything feels like it makes more sense now they have said they think it is this.

I already feel better from coming across this website and forum and reading other people's stories and knowing that I am not the only person going through this.

Thanks again for your advice, I do appreciate it!

[Matillymoo in reply to TigerLily42]

Oh you're so welcome, any time seriously! I totally get it, you can't do all the things that were normal and enjoyable and it can feel so depressing and isolating - but you are not alone. There's heaps of us out here!

You're right, about the invisible part. The pain and fatigue are extremely difficult to manage anyway. But being invisible makes it SO much harder to get through to people and you'll probably find managing people's expectations of you another challenge. You have to find the people who will take the time to understand and support you through it. Be kind to yourself and put yourself and your health first, as difficult as that may be

There are not many diseases that cause mouth and genital ulcers and when i question my diagnosis (which i think everyone does sometimes) i always come back to that. It's the only thing that makes sense. And having that diagnosis has been strangely comforting for me and allowed me to make peace with being ill. But yeah it is a really difficult disease to diagnose, for me it took me about 25 years of symptoms and flare ups until the puzzle pieces fit and I was finally given the correct diagnosis and the right treatment. Anyway I hope you get the answers you need as well and that you can start feeling better soon.

Good luck and keep in touch x

[TigerLily42]

Thanks so much for your reply. It's already helped me massively hearing from a couple of you on here. I've got lots to research and look into for now! Hopefully it doesn't take 25 years for my diagnosis!

Yes, there doesn't seem to be many illnesses that cause both mouth and genital ulcers! I was just sick of being told I had herpes! Glad all the sti tests came back negative.

I will be sure to pop an update on here when I have been through more testing etc. Just hoping my biopsy results are back soon so can move on to the next test!

Thanks again for replying 😊

[Legomum]

oh my goodness I feel your pain! Especially when you said you had to have a biopsy of the ulcer 😢

The time between Behçet’s symptoms presenting and diagnosis is still way too long in the UK. It’s good your medical team have mentioned Behçet’s as a differential but I know infections like herpes virus and EBV (glandular fever) can confuse things but it is possible to have 1, 2 or all 3 of these! They can refer you to the Behçet’s Centre of Excellence (London, Liverpool or Birmingham) as the doctors there can recognise which ulcers are which after decades of experience looking at them. It’s free for them to refer as it is a specialist centre for rare diseases funded by the NHS and the local doctors (GUM clinic or Dermatology or Rheumatology) continue to care for you in the meantime.

Sounds like you need rest and relief from pain so do seek your team’s advice but I know I am guilty of not doing the former as I have a busy brain that needs my body moving everyday otherwise I think too much! I would normally cycle daily or swim or use the gym and I literally had this conversation with Behçet’s dr yesterday about defining rest and was told I have to do nothing to allow my body to heal from recent Behçet’s flare. “But surely a little ride on my e-bike is ok…it’s not a 45 minute spinning class?” was not the right answer!

If it is Behçet’s ulcers then you risk the other inflammation kicking off unless you dampen it down so joints, eyes, skin can all flare up & then it all takes longer to recover.

The Behçet’s clinic have a treatment pathway for those diagnosed and starts with local (topical) things you apply to the ulcers eg steroid Synalar for genital ulcers and recommend a “Triple mouthwash” for mouth ulcers which contains betamethasone steroid, nystatin 2% anti-fungal and doxycycline antibiotic to use 2-4 x day (rinse and hold in mouth for a minute or two then spit out. ) It really works for Behçet’s but you have to really beware steroid if it is not Behçet’s as steroid can flare up other things.

There is also Eumovate steroid creams for skin.

Benzyderm cream is good for pain relief down below along with warm salt baths and your Instillagel to numb the pain. For my student years I survived the pain by applying Emla cream (sold in Boots chemist over the counter) -which is meant to be for numbing skin before blood tests - as that was given to me by doctors in a GUM clinic but have since learned it is actually not the best for sensitive areas down below. Sometimes peeing in the warm salt bath is easier too (shhhhh!) or using a funnel to pee so less stinging on ulcerated areas (eg the “She Pee” device sold for women on camping trips and explorers).

Knowing you are not alone is really helpful so this online community was a good place to start. Look at Behçet’s UK website for lovely patient stories by women who have been through similar to you. Someone else mentioned Behçet’s patient Cat’s blog too “rising from the illness” which may inspire you. Get connected, be comforted and rest well. Ask GP or the team to sign you off work for a full week too so you can focus on getting better as sometimes it’s only when you stop that you can admit how much you have been struggling and your loved ones can reflect on it too. The Behçet’s UK family day in June is a great place for the other halves to meet in a relaxed way and hear the reality of Behçet’s while also not letting Behçet’s beat you. It’s centred around activities eg kayak on a lake, archery, climbing and toasting marshmallows on a campfire you build so you can dip in and out while having fun with a new rare disease community. It’s great for us as we have a 13 year old who was diagnosed aged 4, plus me (now 46, diagnosed Behçet’s around 24) and can focus on the positives and determined to ensure it’s better for the next generation who are diagnosed with this

Good luck on your journey

[TigerLily42 in reply to Legomum]

Hi Legomum,

Thanks so much for your reply.

I have had all sti tests (including herpes) 3 times, and every single one came back negative. I had glandular fever when I was 19 and I feel like this was the trigger point, as much health took a massive downhill since then.

I am the same as you, I like to keep myself busy. I haven't took any time off sick since all this kicked off a few months ago. But I am really beginning to struggle now, especially this last week or so. I feel mentally and physically fatigued. My hip and knee joints have been hurting a lot, I have had a headache most days, mouth full of ulcers and still recovering from the vaginal biopsy! Maybe my body is telling me I should rest.

I have read about the Centre of Excellences. I will speak to my doctor about this at my next appointment. Just hoping it doesn't take too long to get to an actual diagnosis. As if it isn't Bechets, I really have no idea (and don't think the doctors do), so would be back to square one!

Thanks for the help and advice 🙂