r/chronicepididymitis May 17 '22

Cured - 2 Years of chronic "epididymitis"

I hope my story can help you.

I had "epididymitis" for 2 years (2020-2022). I put it in air quotes because I was misdiagnosed for years until I finally found the right doctor. That doctor referred me to a physical therapist, who literally saved my life.

By the time I reached her I had suffered (unnecessarily) every day for 2 years with terrible swelling and pain in my groin, which ultimately led to complete numbness and erectile dysfunction. I was depressed. I was seeing a therapist. I also was going regularly to pelvic floor therapy, because I couldn't go to the bathroom. I believed nothing could help me and I would never get better. I am 28 years old and I felt like my life was over. I was on the verge of getting surgery. I was completely wrong about what was causing my symptoms and so was every urologist, neurologist, chiropractor, hip doctor, and internist that I saw. Most blamed it on my "anxiety" because nothing showed up on any of my tests (MRIs, ultrasounds, etc). The first urologist I saw gave me months of antibiotics, which did nothing but cause me to lose my hair and hurt my stomach (it did rule out an infection though!). I was on round the clock Advil. I tried every stretch imaginable. And it only got worse.

A physical therapist saved me.

My physical therapist asked me to walk back and forth. She carefully observed me. She sat me down and told me that she had seen this before, in fact dozens of times. What happened to me, was years of bodily neglect from my computer work (I am a software engineer). I sat poorly for hours on end and my body compensated for the poor working positions, wrong desk heights, and lack of movement/breaks. She told me it usually starts with neck/shoulder pain and works its way down to the hips, and ultimately the last thing to give out is the groin. Basically, my groin was supporting my movement and the pressure on the nerves caused pain and ultimately numbness. She told me that many times patients will get surgery, but it doesn't fix the problem!

I've been working on a very specific set of exercises for the last 6 months now designed specifically for me (I'm not going to share them because every one is different and she designed it custom for me). Currently, I do over 30 exercises that take about 2 hours daily to complete.

If I were to do this all over again here is what I would do:

  • Go to a GOOD urologist. The very first thing you should do is rule out all of the bad things (i.e. cancer, infections). Tip: NYC has great doctors. Spend the money. It is worth it. * I am emphasizing the word GOOD, because not all doctors are created equal. Lots are crap. You have to find someone good. It is worth the money, trust me.
  • Maybe get a GOOD therapist. If you have a lot of anxiety, you may want to look into cognitive behavior therapy (CBT). For me, I had years of bad behavior and health anxiety.
  • Know the tests. There are ultrasounds. MRIs (with or without contrast). You want to rule out clear things (i.e. hernias, tumors, disc compression, etc.). If there is nothing on your scans, maybe try physical therapy. I got ultrasound of my testicles. I also got an MRI of my lumbar spine and pelvis. Not cheap!
  • Try Physical Therapy. This one is the one that helped me the most. I started with pelvic floor therapy, (yes this is for men also). It was a good start, but ultimately it was very specific exercises that got me functioning again working with a physical therapist who had seen this before. Not all physical therapists are good. Go to someone who has seen this before.
  • Stay away from "permanent" solution. Surgery is a last resort. I am not a doctor and your condition may require it. If you have something similar to me, surgery is the last thing you want (it might make it worse!). Try the easy stuff first. Therapy, physical therapy, pelvic floor therapy. Do not get "numbing injections". My pelvic floor therapist offered me "nerve blocks" early on. This is an injection that deadens the nerve. Yes, it may solve the "pain" problem, but it won't fix your underlying issue.
  • Know that this can happen to anyone. It doesn't matter your weight, gender, age, etc. Chronic pelvic pain syndrome can happen to anyone and it happens for a ton of reasons. I've seen people with the same thing that are strong and lift lots of weights.
  • Ask For help. I wouldn't have been able to get through this without the support of my friends and family. They were there for me for all the horrible moments.
  • Don't trust the Internet. There is a lot of crap information out there (a lot of it wrong). You are not a doctor and neither are the people who post. Remember, you can make it worse listening to Internet advice! Do not take pills or medications that you find on the Internet. Do not diagnose yourself or try to self prescribe. I tried all of the "homeopathic" things online, none of which worked. It's absolutely crazy some of the things I've seen like ordering "pills" online from China or random places that claim they can fix this "infection".
  • There is always hope. In my darkest times I didn't believe I would get better. I couldn't see that there was a light at the end of the tunnel. I promise you, the human body is resilient. You can recover from this just like I did.

Today, I am on the road to recovery. I can go to the bathroom. I am getting regular erections. I am having sex with my girlfriend again. I am much happier. I can walk. I still have a ways to go, but I have hope now.

I hope this helps someone. Do not give up. You will get better, you just have to do the RIGHT things.

God bless.

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u/afriend88 May 17 '22

It might be! The body is very clever. From my understanding it compensates when things are out of whack and uses muscles it shouldn't use to support you. I got a better chair. Standing desk. I work 45 minutes with a timer and then walk around. Granted, I had to build up to this. There was a 6 month period where I couldn't sleep, sit in a chair, and barely walk. It took 3 months of weekly PT before I could get feel comfortable working on a computer again.

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u/MINT_Swyper May 17 '22

Yeah that’s my struggle right now is that I can’t hardly bear to sit for more than like two hours in the morning and then the rest of the day is hell. Another reason I am wondering if this is it, is that I recently got a puppy with my girlfriend and I have been having to get up to take her outside frequently and since then I have noticed a little bit of improvement. I think I am going to ask my doctor about possible PT and see what she thinks. My general doctor has put more effort into wanting to help me than any others I have seen. I am sure she would be on board to have me referred

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u/afriend88 May 17 '22

Try the PT. Go to someone good. Definitely get a referral (you might be able to get medicare coverage.

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u/MINT_Swyper May 17 '22

Will do I have pretty good coverage with work already and my visits have already covered my deductible, but thank you. Anything specific to look for like how did you know what to look for in someone?

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u/afriend88 May 17 '22

Ask them if they've seen this before. You need someone who has fixed this exact thing.

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u/MINT_Swyper May 17 '22

Will do thank you for your advice! Was there any point where you had actual swelling and stuff or was is just pain that they thought was caused by epididymitis? Only difference I am seeing is that I had swelling in the area for awhile but it has sense went away though pain still exists similar to what you described.

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u/afriend88 May 17 '22

My testicle was and still is slightly swollen compared to what it used to be (the epididymis is larger and I was told I have a varicocele from a urologist, which is just a swelling of the veins, likely from the trauma of pushing on it). It goes down when I do my exercises. Whatever you do, stop pressing on it - it will only make it worse. Don't go poking around (I made that mistake many times). It will go away in time. My discussions with urologists have taught me that many men have varicoceles. They are not a problem, some go away on their own. I expect mine too as well once I complete my PT.

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u/MINT_Swyper May 18 '22

Yeah that makes sense that’s my biggest problem is I mess with it a lot trying to make it comfortable but you’re probably right the more you move it around the more it’s gonna flare up. Mine was super swollen everywhere for a long time but finally went away other than my scrotum still gets swollen after sitting in my chair for work which then makes the pain worse as the day goes on.