Genital sore confusion

[Fedupfemale87]

I'm currently under diagnosis for bechets.

I have been good in keeping a symptoms diary ... in a nutshell I experience:

IBD

Alopecia aereta

Mouth ulcers frequently

Muscle/bone pain

Stiff sore legs particularly around my ankles and calves.

Chronic fatigue

Genital ulcers....

So with the Genital sores I have been bacj and forth to sexual health to get them tested for herpes. Every time I get a negative result and no other stis either. Had bloods done too and all clear.

My sores start as a red sore area occasional white pimple the the inside of my vulva swells and gets inflamed and then ulcerates. They are large white areas like mouth ulcers which then pit in the middle and get deeper.

I've tried so much to ease the pain. It's taling a huge toll on my career and relationship.

I'm currently in a flare and am so worried about telling work again as I literally can't walk. I've had so much time off I don't know what to do.

The sores are relentless. I'm currently using lidocaine gel and zinc oxide cream and am on colchicine.

Any other tips? Also how do your ulcers start and appear?

[Icefire]

I really feel for you. It's so painful and embarrassing. And also people can't see it so you wonder if they believe you. Same with fatigue that can't be seen. And the join pain.

For genital ulcers my lifesaver is dermovate ointment (high strength steroid cream). First sign of a lump or sore patch put the cream on and it comes to nothing. Thankfully I rarely have to use it now but it certainly helped for a number of years. (I had it prescribed by the GP).

I've spent a lot of years researching and changing diet and lifestyle and this is now my way to manage Bechets.

Omega 3 high strength supplement and Methylfolate supplement along with a diet high in veg, low in starch and sugar with a moderate amount of fish, cheese, eggs, meat keeps me good for now. Dr Van Tulleken ultra processed people, glucose goddess and Zoe Nutrition book / podcast have been of particular interest.

I think I have learnt to manage stress better and do what I can to protect sleep. I exercise / move as much as possible being careful to build slowly as this in itself can cause a flare.

I sure things will get better for you. Especially if you do what you can alongside what the Drs can offer you.

Good luck.

[Fedupfemale87 in reply to Icefire]

Thank you so much, I really appreciate this. Have been feeling so so alone with it all and the found this forum. I will start taking better care of my diet straight away. I have a 2nd appt next week with Rheum Dr so will ask for this ointment.

Thank you xx

[rooser1]

you sound like me, I am assuming we are same age 37? When I cut all carbs (I did candida diet as I was having thrush issues atm) my life started turning around. Literally around day 10 I woke up with more energy. I would then dabble with Keto diets as I felt fatigued or felt ulcers come on...and use antiinflammatory herbs like rosemary and oregano. ( I know the homeopathic shit seems fruitless but coming from colcrys as well and prophylactic antibiotics and anti fungals etc etc.... this is the better end and they do work if you do the right combo. I am now med free... just on vitamins.

I agree with Icefire on methylfolate- and to add- you need a b complex all around as well as a vitamin d at a minimum. We run through vitamins like no ones business. I also take a calcium and magnesium daily (do it). Also we are likely b vitamin deficient ( I am and also ended up with pernicious anemia now) but low b vitamins are also associated with ulcers... like Wild right?

I am now ulcer free, pain free. It takes time to undo the chronic inflammation- but Im telling you- the inconvenience now of a strict diet to get your life so so so worth it. I now can have carbs back in my life- but still no sugars (I ended up being sucrose intolerant..... you might be too Miss IBD)

so in a nut shell:

drink all the water.

get all the sleep.

b complex and d...magnesium too. You can not overdose on b vitamins, get a methylated b complex and start popping them a few times a day.

cut processed foods and sugar.

it takes time and sometimes you get very "i cant do that" but make it into "i dont do that.'

always here for you. Also for peeing, if you drink 200ml water every hour on the hour.... it dilutes it enough to make it bearable. Also neosporin between the lips. Thats what I did.

xoxo