Effective pain relief for genital ulcers - Behçet's UK

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Effective pain relief for genital ulcers

Vanblitzen profile image

Has anyone found an effective pain relief for female genital ulcers please?

This symptom started about a year ago and I am currently experiencing a severe flair

But neither my doctor or specialist has been able to advise a way to help the pain and I thought fellow sufferers might have a working solution or advice.

Thank you!

31 Replies

Hi, have a look at my reply to Lucets below. Feel free to private message me. Lesley

in reply to lesleyg

Belinda again just got ditched by my specialist need help!! Thanks

Thanks, have read it, will try changing more often and see if it helps, I really need something that will help with the pain, im literally screaming when I need the toilet atm it's horrendous 🤦‍♀️

lesleyg profile image
lesleyg in reply to Vanblitzen

Some patients recommend using Emla cream - it is a very good cream for numbing areas. The other thing you could try are sitz baths. Lesley

Vanblitzen profile image
Vanblitzen in reply to lesleyg

I thought that was just for tattoos, I'd never considered using it for that area. I'll read into thank you.

I actually saw sitz baths earlier but it showed me on American amazon, I was meant to look when I got back from the school run, but I got busy and totally forgot so thank you for the reminder! Xx

lesleyg profile image
lesleyg in reply to Vanblitzen

I’ve just put up a new post re asking what to put in the bath - I’ve only had mine a month or so. With the Emla I was told to use it sparingly on the ulcers on my fingers and I’m sure I saw someone mention a doctor told them to use it on the nether regions. It does sting but after a few seconds it takes away the pain for a couple of hours. Again it is something I wish I had known about ten years ago! It’s main ingredients are lignocaine and prilocaine- according to my doctor the prilocaine makes it last for a long time.

Cheers Lesley

Vanblitzen profile image
Vanblitzen in reply to lesleyg

I just ordered the sitz bath due Fri everything crossed that it helps 🤞🤞🤞

When I’m flaring (with genital ulcers) I spend most of my time in a hot bath, it’s the only way for me to survive. My doctor prescribed me lidocaine gel which I can highly, highly recommend if available! It’s super quick and effective and lasts for a few hours, it made my life so much easier.

feel better soon!

Vanblitzen profile image
Vanblitzen in reply to Stin4

I don't have a bath unfortunately I was diagnosed because it caused brain swelling and strokes and it affected my speech and mobility and I had to have a wet room installed, i miss a bath 😂😂 I'll try and see my Dr tomorrow and ask to try the gel, i use lidocaine spray for my mouth and its amazing x

Thank you x

lesleyg profile image
lesleyg in reply to Vanblitzen

Exactly the same happened to me regarding my bath! Try buying a sitz bath which goes over the toilet bowl. I wish I had known about it early days!

Vanblitzen profile image
Vanblitzen in reply to lesleyg

I ordered one tonight it's due Friday courtesy of amazon prime lol, really hoping it helps! X sorry you had the same, I miss lounging in a bath can't really read in the shower 😂😂

I feel for you, I had my first flare about two months ago and it was the most painful experience of my life. It was so bad that my doctor literally said “oh my god” when she saw the ulcers and sent me straight to the accident and emergency department. I was in hospital for five days. I can’t take many pain medications because they conflict with another drug I take but they put me on morphine and it helped a little bit for about a day, but even with high doses it didn’t take away the pain. They then put me on gabapentin which is AMAZING!!!! Took the pain away almost completely. The doctor said it worked so well because that type of skin is full of nerve endings which is what gabapentin is good for. I also used lignocaine gel every time I went to the toilet for three weeks as the ulcers healed - couldn’t have done without it. Also agree about hot baths, but to be honest I couldn’t even tolerate those when the ulcers were really bad. I wish you a speedy recovery, and hope you find some relief soon x

Vanblitzen profile image
Vanblitzen in reply to LisaNZ

I actually have gabopentin I believe, Dr put me on it previously for something else but it wasn't very effective for me but I'll try it for this, I was planning on trying to get a drs appointment this week for the gel but when I take oramorph in the evening I do sleep and I'm exhausted 😴😴😴

LisaNZ profile image
LisaNZ in reply to Vanblitzen

Sorry, meant to reply to your post but I’m not great with technology haha. See reply below

Yeah gabapentin doesn’t help with my fibromyalgia pain (different issue to behcet’s...or maybe not haha) but worked for the ulcers immediately (was on three a day, divided doses). I genuinely hope it works for you!!! Let us know how you go :)...I really love this forum, I have only had my diagnosis for a couple of months but I find these posts (and the replies) incredibly helpful! 🌸🌺🌈🌷

I use products that are used for diaper rash on babies. It provides a barrier which gives me pain relief.

My rheumatologist said that urinating in the shower keeps the burning minimal. It's VERY inconvenient but it works!!!

Vanblitzen profile image
Vanblitzen in reply to Guna1003

I have tried this but I have a shy bladder and it doesn't like the idea 😂😂

Guna1003 profile image
Guna1003 in reply to Vanblitzen

Haha! 1st time hearing about a shy bladder...I love it!! I hope you find something to relieve the pain. I also get really bad ulcers all over my body; eyes, genitals & throat torcher me the most. I'm so glad we all have eachother here to help, encourage and console one another. If I come across anything that helps I will defiantly let you know. Please do the same! Best of luck to you ♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡

Vanblitzen profile image
Vanblitzen in reply to Guna1003

I know it's actually a nightmare at times, I will do, I tried the shower again tonight and again couldn't I did however really the shower head reaches the toilet and that helped 😂😂 I have a sitz bath coming tomorrow so hopefully that helps x

Guna1003 profile image
Guna1003 in reply to Vanblitzen

Shower head to toilet...genius!

Vanblitzen profile image
Vanblitzen in reply to Guna1003

Occasionally I have good ideas 😂😂😂

lesleyg profile image
lesleyg in reply to Vanblitzen

I haven’t tried it yet but again I’m sure I’ve read where someone fills the sitz bath with warm water and then urinates. I have to run to the toilet so often I can’t imagine stripping off for a shower each time! Makes the mind boggle, lol.

Vanblitzen profile image
Vanblitzen in reply to lesleyg

It's arriving tomorrow so hopefully it will help xx

....with the shower on! Sorry forgot to mention that. Lol

i personally had to drink enough water to dilute the urine just to uncomfortably pee over the ulcers. peeing in the tub or running water did not work for me. I drank 8 oz every hour, on the hour. with the mornings, i would guzzle down water and hold it until i couldnt- it made it bearable.

other than that i used neosporin in between the lips, thats about all i could do i suppose. sleep if you can, cant hurt while youre sleeping.

so sorry for this pain- i know its the worst.

xoxo

Vanblitzen profile image
Vanblitzen in reply to rooser1

Thanks I'll try, to be honest I don't drink enough anyway so it's a good reason to start. And sorry for you to, wouldn't wish the pain on anyone :(

LisaNZ profile image
LisaNZ in reply to rooser1

Yes, really good point! I also drank a LOT of water to dilute the urine - probably 4-5 litres a day. I was scared that I would need to stay in hospital and have a catheter like a couple of other patients had before me. That kept me guzzling the water haha

Thanks everyone for the suggestions, im currently experiencing a rather horrible flare and saw my doctor today and got myself a short course of steroids to help end it, I also have lidocaine cream (vagisil lidocaine 2%) which I was doubtful about but it actually helped!!

I also received my sitz bath which I used with plain warm water and that also allowed toileting bliss! Happy Vanessa right now blessed be ya'll xx

Hi Vanblitzen, I’ve had same issues as you! I’ve found that Salbutamol Inhaler (blue inhaler) sprayed on Ulver really helps. As it contains steroids in it. I’ve tried & tested it. Shrinks them too. My GP prescribes it to me. Hope this helps.

Hi, I’ve used synalar ointment which took the redness right down, also used for ulcers. Definitely recommend the additional luke warm bathing. Best wishes

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