Epididymitis infection from bechets: Hello I... - Behçet's UK

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Epididymitis infection from bechets

pete11 profile image
9 Replies

Hello I have this really painful problem has anyone else had Epididymitis infection? I have had bechets disease for a long time and have all the ulcers and joint pain which by itself is really difficult to walk and just living with the joint pain is missirble. I am on antibiotics for 14 days for my testical infection just wanted to find out if anyone with bechets has had this problem. I also have fibromyalgia which is not making anything better.

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pete11
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9 Replies
sam0511 profile image
sam0511

Hi Pete, being female I haven't experienced this obviously, just wanted to message to show support, and hope you get some relief soon from joint pain etc. I am suffering with joint pain too in small joints of hands, shoulders and pains in lower leg. Can only assume this is behcets related. The pain does get you down. I soak in a warm bath to try to ease some of it, not sure if it helps but its quite relaxing all the same. I don't know where in the world you are, but I would get to the GP and be referred to a consultant. I feel we put up with it too much sometimes, mainly because of the blank faces when we explain what we have. Good luck. Post how you get on. x

2106 profile image
2106 in reply to sam0511

See my reply to pete11 it may be worth doing if haven't already.

Eaf1 profile image
Eaf1

Hi there Pete! Epididymitis was the first really bad symptom I had when I began my flare ups about a year ago.

I understand how very painful it is, and can fully appreciate why they call it 'the devils balls'.

Thankfully it was only once in every 3/4 flare ups and not a constant symptom. I have been on a mixture of Mycophenolate, colchicine (helped with the joints) and lymecycline (for my skin) for some time now which helped but not stablilised.

I am now on an anti TNF drug called Humira which has kept me flare up free for around 7 weeks now.

I do hope that you find something to ease the discomfort soon, I considered asking for them to just be removed at the height of the epididymal infection :(

Best wishes!

Ethan

2106 profile image
2106

Just wondering regarding joint pain if you have ever been tested for vitamin D deficiency as this causes Ricketts effects pain in joints. I was tested as joint pain was awful and found I was deficient now take dosage every other day joint pain so much better. Worth a try if haven't. All the best I hope you feel better soon.

sam0511 profile image
sam0511 in reply to 2106

Am on Vit D all the time. Back to the consultant in 2 weeks with a list. Thanks for the advice though.

Westmeister profile image
Westmeister

Hi Pete

I have had Epididymis numerous times before I got diagnosed with Behcets last year .. you have my sympathy it's not nice pain to have !!

lovenothate profile image
lovenothate

Hi Pete,

I have also suffered the evil pain of epididymitis in the past, before I was diagnosed. You have my sympathy as it's thoroughly horrible. I hope you get on top of this soon.

All the best,

Will 😬

Barry71 profile image
Barry71

Hi, I have had this on and off regularly since being a teenager - it is not as bad or frequent now (I'm 45 now), but when I was younger it would be very uncomfortable, with pain behind my navel, and an ache all down my leg, and could make me feel generally unwell.

I find that my testicles can go through periods of feeling 'tighter' or more shrivelled up, which I think can lead on to this - I sometimes get a slightly tender area but it can subside. When I'm on steroids they go noticeably 'looser' and hang a bit lower, and feel 100% normal.

Until my 40's it was always the right side, then switched to the left for a bit.

Barry71 profile image
Barry71

I have just remembered that very spicy food used to always set this off. Also, when I cut out gluten from my diet a few years symptoms became less frequent and severe, and spicy food tends to not trigger it now.

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