I wanted to document my experience in hopes of getting good insights and helping others with similar pathology.
That is, throbbing pain and tightness in the lower scrotum, behind scrotum and perineum area.
3-4 weeks prior to 4/5/2020, I started feeling tightness around my scrotum area. I ignored it and saw 1-2 urogloists via telemedicine who prescribed anti-inflammatory drugs like Naproxin and Meloxicam. I took some but it had no effect. I went on with my life as the pain was just tightness on a scale of 0.5/10.
4/5/2020 - went to ER at UCLA (during covid crisis). While sleeping at night, I felt a sharp, stabbing pain in the scrotum area 8/10. It was really bad and when I put my hand down there, it felt hot, like it was burning. I couldn't sleep and it was really frightening. I thought I was going to lose my lower area.
The resident doctor did an ultrasound and looked a penis/scrotum and asked me some basic questions. He diagnosed me with prostatitis and discharged me with pain meds and antibiotics. I thought going to the ER was super high level with different doctors looking at you for the problem but it was just 1 guy from 1-5am and he didn't seem super interested in helping me, although he remained professional. The people who did the tests were more sympathetic and nice.
Prior to March/April 2020, I had no problems health-wise. I had a minor car accident - rear ended lightly by another person in March. 10 years ago, I had some carpel tunnel issues which I was able to resolve with Clair Davis's book The Trigger Point Therapy Workbook (amzn.to/3e1kvGM) with my upper body. No problems ever in my lower body.
In April 2020 I went through my Dr David Yao via UCLA and did a CT Scan from abs to knees, urianalysis, STD tests, Urine culture tests, and a digital rectal exam (DRE). We found nothing except that the pelvic muscles were very tight on the DRE. The radiologist read the ultraound and CT scans as "unremarkable". Dr Yao referred me to pelvic physical therapy.
I'm lucky to have Stephanie A. Prendergast here in LA and I saw her twice. She said I will be fine, we caught this early on.
My working hypothesis at this time was that years of sitting on a hard chair and bad posture had caused my muscles to be super tight in the pelvic area.
From March-June, I subsequently worked with a PT who takes insurance (PT here is expensive $250 a session in the US) for 2-3 months, working on external trigger points (TrPs), internal TrPs, diaphragm breathing. She had good reviews on Yelp and she's very kind and helpful with 30 years of experience.
I read all the books. Dr Wise's headache in a pelvis, Dr Jerome Weiss's book, Stephanie's book Pelvic Pain Explained, I read about DCT by David McCoid, Amy Stein's book on stretching and Dr. Susie G's book Cockblock.
My initial feelings (could be wrong) was that Dr Wise did a great service by doing clinical studies and bringing this forward in the medical community (and Tim Sawyer and Dr Anderson - thank you). However, his book didn't consider when maybe other factors other than tight pelvic floor might be an issue.
Dr Jerome Weiss's book was great. He's retired now but he did use a lot of injections and on Yelp there were 1-2 mentions of people having some issues with that.
DCT is interesting but their whole sales funnel is very salesy and built around converting you instead of helping you. Basically what I got was, regular stretching doesn't work you have to use resistance stretching to get rid of pelvic pain, and that in the beginning things might get worse bc resistance stretching is harder. A lot of reviews (not sure if fake) said when nothing else worked, DCT worked but it took them 3-6 months. I'm unsure if these are real bc of their sales tactics.
I think Amy Stein's book about stretches is helpful but potentially dangerous bc without resolving trigger points, her stretches can make things worse and she doesn't fully acknowledge the dangers of this.
Dr Susie G I actually liked - the illustrations in her book are original and clear and she emphasis's Thiel's massage and isometric stretching in the intrapelvic muscles. She didn't offer anything new or ground breaking, but the book was clear, helpful and had a helpful tone.
I also reviewed all the clinical studies on intrapelvic massage related to pelvic pain thanks for Dr Whelan's paper in 2013:
While reading the literature, I went to see a few PTs here in LA and even a pain doctor.
Despite this, after 6 weeks, I'm still in pain. We had made some progress in the beginning but it seems like I'm back to where I started after 3 months. The pain is only on a scale of 2/3, but it is debilitating. I can't sit and do computer work for more than 1-2 hours a day, if that.
Let me take a moment to acknowledge those of you who suffer from this - the loss of your ability to work, the loss of friends, your mobility and basically a large part of your life - romantically, socially and financially. This stuff gets expensive, even with insurance because in the US, pelvic pain specialists often fall out of network with coverage. Most importantly, it made me realize what's really important in life - your health and the love you have and your connection to God/the universe or whatever you believe in. It gave me a chance to pause, and reflect. I know that when I recover from this, I will never be the same. And that's a good thing.
I have tried acupuncture, diet changes, massage therapy. Acupuncture for me didn't feel any different.
Diet changes felt good but did not seem to correlate with pain.
Massage therapy is interesting - it seems like it helps but a few days later, I feel sore and it made pain worse. I hypothesis that the nerves are already very sensitive.
It's now 7/2/2020, 3 months later and last weekend the symptoms got worse. I'm not sure if it is a flare up. I'm moving back to the Bay Area (San Francisco) to live with relatives and hopefully smartly distribute my funds to the right practitioners to solve this problem.
This is my working hypothesis and I would love input from people that may have been thinking about this in a logical manner. I know we're not doctors here, but what we have are real personal experiences.
#1. PT is the key.
I spoke to Dr. David Wise. From our conversation and his book, he's very adamant about pelvic floor muscles being the main problem. He put me in touch with a very good PT for an initial diagnosis. This path assumes that the muscles are the main issue, and a PT can help the problem and we can go from there.
#2. More tests needed
My Urologist at UCLA has said I can do a cystoscopy and MRI with contrast, but he said given our results so far (see above) it seems unnecessary. I think a pudendal nerve test may yield some interesting results and maybe a MRI scan of the spine and pelvic reason. This path requires I find a good doctor and hospital facility in the bay area. Based on my experience with urologists so far, I'm not optimistic. I think some of the PTs I'm meeting in the bay will have some referrals hopefully.
#3. Pain management
My pain doctor here in LA put me on Gabapentin. It seems to be working a bit but it's hard to tell on some days. We started out on a small dosage. He does nerve injections too but I'm trying to avoid these right now. Also, he's in LA and I'll be in SF. I believe pain medication (non addictive) is helpful to break the cycle. I was taking hydrocodone acephetamin that the ER doctor gave, and my pain doctor said those type of drugs are not only addictive, they make the pain worse bc your body develops new pain receptions bc opiods cut off the brain's connection to the pain receptions. I have heard from other patients and my PT that Gabapentin seems to help calm the nerves. I was also given Flexirol but I was told to only take that when flare ups happen. I read on the clinical studies show that Flexirol is a temporary fix to muscle spasms. Would love other's experiences on that if you have any.
#4. Mental / nervous system
I used to get mad when people said it was mental bc I knew in my body that it was a physical issue. But I meditate and I take long diaphragmic breaths throughout the day.
Dr Whelan had a great instructional page on breathing and the pelvic drop here: pelvicphysiotherapy.com/pel... She calls it "release" and Stephanie calls it a pelvic drop.
I heard Cognitive Behavioral Therapy helps but I'm just not there yet. I'm a pretty calm person and I meditate, and I really think this is a physical problem and not a mental one. I'm not opposed to this idea, but I have to trust my instincts right now.
#5 What if it's something else?
I'm reading up on other possibilities like Orthopedic doctors, chiropractors that fix imbalances in the body that include muscle and also bones. I also went to the Egoscue method and got their stretches to fix my posture but those stretches just hurt too much right now my pelvic area.
Stretching actually hurts, and Im not sure how to do it correctly without it hurting.
It could also be sensitive nerve but I've never had any damage to my pelvic area so I'm not sure what it could be. The only injuries I can think of are 2 minor car accidents like the last 35 years, and when I was 12 a girl kicked me there (another story for another day) but I've never had any major injuries.
The most annoying this is that - a proper diagnosis is unclear - what's causing the pain, and how do I fix it? Without someone I trust with this... I've left trying different things and testing each variable.
I'm usually a very organized and ambitious person, but it has been emotionally challenging trying to solve this.
If you read this far, thank you and if you have anything to add or can help with the discussion of this particular pathology please reach out. Thank you.