Going to the bathroom

[Cool_blue]

I have an open genital ulcer and it’s very painful when I pee. I wait and try to hold my pee and I know that’s not healthy but it really, really, really burns when I pee. Any suggestions on how to make some of the pain go away while peeing? I am currently taking 60 mg of prednisone for the ulcer.

[netak]

Have you tried to pee while sitting in a basin with worm water. Urine gets diluted , hurts less, works for urinary truct infections well or at least makes it less painfull

[Kelie in reply to netak]

I was going to suggest this, using a stiz bath with warm water. It’s what I help me when I have ulcers or my IC flares

[Legomum]

Can use steroid ointment on ulcers - Synalar prescribed by GP/ Behçet’s doctors. Others use the asthma brown steroid inhaler sprayed on to ulcers to help reduce the inflammation. Bath in warm water with salt poured in and pee in there. Drink plenty of water to dilute your wee a bit. Regular painkillers like nurofen and paracetamol too. Hope this helps!

[Hidden]

A little dab of preparation H with lidocaine really helps me when I have ulcers there. Its petroleum based it helps the stinging and the lidocaine numbs it a little.

[gillianTS]

I use a sterlised plastic disposable water bottle filled with warm water, those with the squirty tops, I gently squirt warm water as I pee diluting the strength, it works for me, I pop the filled bottle in my bag when out and about though then using cold water 🙄 I also have in the past added a few drops of tea tree oil, giving a huge shake up every time before use making sure mixed properly.

Hope it goes soon.

[marlene123]

Like others said the best thing is to use water to dilute the urine, on a basin or personally I prefer the shower. At the same time you can get nice and clean to apply the creams and ointments afterwards. I know it's not ideal but that's the best option. Hope you get better soon. We all know how painful that is. When you get better don't forget prevention. I stopped using jeans, only skirts and leggings. And total hair removal down below reduced my ulcers 99%. My rules: no trauma, no rubbing or scratching, no discomfort down below.

[OpsDave70]

I recommend Plaquenil if you can tolerate it. Takes a while to build up in your system, but I noticed a 95% reduction in ulcers in the second month. To handle the ulcer you have right now, the thickest petroleum jelly, like Vaseline, might help. A compounding pharmacy might be able to mix up lidocaine, petroleum and aloe to help even more. You don’t want to be peeing all the time, but if you restrict fluid intake to reduce the times you pee, your urine will become more and more concentrated. So sorry you’re going through that right now. I hope the prednisone taper helps you get rid of it quickly.

[Blearyeyed]

If you tolerate it , and you have time to dry the ulcer and apply it before urinating putting a film of petroleum jelly on an ulcer helps protect it from the urine .

You can then choose to use the squirts bottle with water poured down as you see to dilute the urine too , and choose to wash off the urine with slightly salted water and dab off the jelly afterwards gently so that the ulcer remains clean and dry helping healing.

Petroleum jelly in a thick film also helps cover your open spots and smaller ulcers and lesions on your legs and arms if you are doing something sporty or want a swim for a little

gentle exercise but don't want bacteria / chlorine from the water to get in your open sores.

Take care , Bee x

[Number4]

We feel your pain! Obviously I'm male (Captain Obvious perhaps?) I put 2% Lidocaine on the lesion on my glans and I have a very small dropper bottle with a 4 or 5 mm diameter dropper. I gently insert that into my urethra and squeeze the bulb as I remove the dropper. The lesion is partially internal. Sometimes the Lidocaine burns but I know that will be for a short duration. I hope that isn't TMI. While those in this group share many intimate symptoms I'm not sure sure where the line is on speaking of them or if there is a line. This is a concern of mine that I don't type something that is unacceptable for this forum while I'm not likely to be bothered by anyone's honest discussion.

[OpsDave70 in reply to Number4]

Helpful info! Don’t be shy. Any info that you provide could - and most likely will - make a difference to frustrated, anxious people who are looking for answers. I’ve poured my heart out on this app, even the most embarrassing stuff I wouldn’t tell anyone outside of a forum like this one. I have one of the most aggressive, damaging forms of this disease. It has hit a lot of things, but I’m glad that it seems to hit one or two things at a time and not everything at once (knock on wood). This disease has caused near-complete endocrine failure, cardiac arrhythmia, ulcers in my nose, mouth and down below - front and back, chronic migraine, chronic fever, severe pancreatic damage/exocrine damage, brain swelling, severe bone and skin nerve pain, bladder control issues, I have to manually have to regulate fluid and electrolyte balance by taking injections of synthetic vasopressin, gained and lost weight (60Lbs either way) for no reason and there are other problems not listed. I don’t even know how I am alive, but I am. 99.99% very happy and grateful to be here. My family, friends and people at work are really wonderful and have been supportive as I navigate this illness and treatments in order to try to get this disease to go into remission. I also have psoriatic arthritis, but it kind of blends into the Behçet’s and I am not really sure where one thing ends and the other begins. Past treatments include high doses of prednisone, Plaquenil, Humira and Methotrexate and I am currently just starting on Inflectra (Remicade). I don’t make the enzyme needed to tolerate Imuran so that was not an option.

Best,

Dave

[Number4]

Thank you for the encouraging words regarding what I wrote. I wish you the best. Maybe we will each find that near perfect cocktail of meds that puts this beast into remission.

[Jules6663]

Try putting Vaseline on to act as a barrier, it’s what my daughter has to do or she has to sit in water.

[justbr34the]

Drinking a ton of water will dilute your urine when you pee and make it MUCH LESS painful. Your urine should be coming out almost clear. If it’s yellow then you’re not only dehydrated but your urine is more concentrated and will definitely burn any open wounds. That helps me anyway! Good luck!!