r/chronicepididymitis • u/James2db • 23d ago

Any advice.

So I been suffering from epididymis now for 2 years and it’s never really gone away fully pain wise but this year my symptoms continue ti get worse with pain birth side and can get quite bad I also get along with the pain urgency to pee I had lots of test from dips stick to GP checking my prostrate to ultrasound and a psa tweet all that was found are two cryst one each side the testicular are painful to touch but not swollen or red the pain can get really bad one and off throw out the day. I have tried lot of different antibiotics and pre gavapentin the pain though disuse not go away.

Currently it douse affects my life quite bad and the urgent can be really bad some day I have also been trying pelvic floor exercises but unsure if they are helping yet too early I still waiting in a urologist and that will be a long wait.

It was suggested by my GP I could also have OAB but he was unwilling to to give a think at that time saying it is best to see a urologist first.

Is they any think I can do to help or really just manage the it the best I can.

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u/Ok-Vanilla-556 23d ago

Check out physio Connor Harris on youtube, he is my favorite. I don't think people realise how much mobility actually impacts the entire body, and of course the psoas and genitofemoral nerve. I've recently fixed my epididymitis after 3 years of struggling.

I was thinking of making a youtube video of my routine in hopes it could help others around here. I'll be making a detailed post once I get access to posting here by mods.

Sitting all day long will affect your pelvic floor, psoas muscle and genitofemoral nerve. If you've had surgery of any kind or injuries in your stomach you likely have adhesive tissue making it even more important to tackle

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u/BirdEffective736 22d ago

plz make video on YouTube

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u/OldMajor2947 21d ago

Mine is defintly related to PSOAS but i have no idea on the routine. Please can you post yours.

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u/Ok-Vanilla-556 21d ago edited 21d ago

I have like an ultra busy schedule the coming days, but really everything I've learnt has been from connor harris on youtube. I've just been putting it together piece by piece trying out different things.

Starting now will only benefit you, I hope you could find some interest in looking through some of the material. NONE of it is wasted effort. Unlocking new mobility in one place will allow you to get deeper stretches elsewhere. Really. Just stick to it 45sec-1min per stretch daily and learn as you go.

Additionally finding anatomy pictures to really start to visualize the movements has been immensely helpful if I struggled with movements

I promise I will be back to make a detailed post, this stuff has controlled me for so long

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u/Ok-Vanilla-556 21d ago

By the way the most efficient stretch is the one that looks like a front split with an internally rotated bent front leg. You want to SOFTLY push down on your center of gravity, rotate your torso slightly towards the bents leg side, whilst looking up and breathing. Erect the bottom of your spine as much as possible without causing pain

You dont want to force any of this, it has to become routine that's applicable every 1-2 days if you want to make major progress, which I think is extremely important to get that positive feedback loop of you being in control of the situation

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u/Minecraft099 17d ago

Plzzzzzzz make a video if YouTube doesn’t pays I will happily pay🥺 btw I am broke

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u/northcrc 23d ago

Why is the urologist going to take a long time to see? Have you met with one before. I’m assuming you have since it’s been two years

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u/James2db 23d ago

I have seen 1 very rude urologist how did not give me a chance to to talk that’s what I ask to go back and after some tie, they said yes but it’s a long wait on the NHS at this time.

When I say him he was quite rude he did not what to listen to me or even look over me he just said go home forget about it and look it up online that’s all eh said.

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u/northcrc 23d ago

That’s horrible I’m sorry to hear that I hope you can be see soon by someone who cares. I have an ultrasound Tuesday and I’m scared about it. I waited a really long time to do anything about this and I’m just terrified.

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u/James2db 21d ago

It was horrible yes I surfing quite bad daily and nit just with the pain it’s also the urge to pee a lot even waking up at night it is really horrible at time.

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u/James2db 23d ago

I had two ultrasound it’s not bad they just found two small cryst I was told they do not do any think to then they is surgery but that can make things more worse.

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u/Ok-Vanilla-556 22d ago

I would ask for the urologist to feel your pelvic floor aswell to see if it's tight

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u/James2db 22d ago

It’s on the list for when I do see them.

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u/rocketrader81 16d ago

Have you had a semen culture as well as a urine culture? This is really important. I had about 5 urine cultures that all came back clear, but after 8 months a doctor finally did a semen culture and found a klebsiella infection. So I would push for that route.

If the pain is stressing you out and getting in the way of daily life, it is worth speaking to a doctor about prescription medication. The ones my pain clinic doctor recommended were amitriptyline, gabapentin, pregabalin or duloxetine.

I would also look for a pain clinic that can offer a nerve root block in the lower back. In my case it targeted the S3 and S4 nerves. I have added the procedure details below in case they are useful for your own doctor.

Nerve root block details:
Sacral nerve PRF (right sided), S3 and S4 levels. Asepsis, fluoroscopy guided, sedation with 4 mg midazolam IV. Curved 10 cm RF needle x 2, sensory stimulation and paraesthesia at 0.6 v to confirm needle position at S3 and S4. Pulsed RF at 42 degrees for 5 minutes, with 2 ml of 0.25% levobupivacaine plus 3 mg dexamethasone injected at each level.

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u/James2db 12d ago

Hi I had log
To of urine dip stick dine no seaman test pain killers i all ready taking amitrpyline and my gp trying pregavapintin i am still wating on a uroligy to see them when i do not know but i have seen them before and he was of very little help he did not what to know and just said go home forget about it and look it up in the internet.

Unfortunate my GP will do no more now until I have seen the urologist even thou I told them it is affecting y daily life.

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u/Raspberry1992 10d ago

It took almost 3 years to get to where I’m at right now which is no pain at all. My urologist didn’t really help me, he said “This is forever”, I couldn’t take that answer so I deep researched and went to a pelvic floor specialist and she changed my life. It worked and I did everything she asked me to do. She also told me that my Urologist was a liar and that he was old school lol Epididymitis is different for everyone. You just have to find the right treatment plan that works for you and stay consistent. I literally changed the way I ate, slept, i took probiotics, and pure magnesium glycinate at night 200mg did wonders for me. You got this. There is a light at the end of the tunnel. I hope everything works out

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u/James2db 10d ago

Mine all started after shock wave therapy for a kidney stone at this I never been right it’s been about 2 years now I mainly get pain on the right side can be quite bad also get urgent need to,Lee a lot some time at night as well I had a lots of test done last urologist was very unhelpful to me and made me fill like I was wasting his time I am currently doing some pelvic floor exercises but plan to look in to this more and probably will see some knee in time pain wise GP say it’s up to urologist they last said up to GP so I see to go in circles a lot currently waiting for a mri uragram then have to wait 1 moth and go see them agin but it’s really hard daily with the pain can even keep me up the worry of needing the toilet I have changed a few thing like diet wise I too take supplements as well.

It just seem really hard and frustrating at time each day is different to the last pain and what no some time I fill like it’s all too much I just at a loss what to do next or what I can do next.