Help with Lower Scrotum and Perineum Pain

[pelvicpainquestions]

Hi All,

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:

pdfs.semanticscholar.org/1a...

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.

Treatments:

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.

Hypothesis:

#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.

[kalecolbe12]

I still think that gabapentin would help you as it helped me and Flexeril has helped me too and I've been taking both of them for 3 months I feel much much better and I'm only going to PT once every two weeks or once every month now she did some really good work of clearing the nerve paths in my sacral area... Along with daily stretches and diaphragmatic breathing and also check out the pathways free download...mind body help.... I think the nerves are super sensitive and that's why I think the gabapentin/flexeril had calmed everything down there's also a thing called formula 303 which is supposed to help relax things but I'm going to stick to the prescription meds for another few months then I may go to more naturopathic things...strange too because I know I was clenching for a long time but I also had a bad car accident so who knows I just know it's working for me...if you want to stay in touch for support that's fine with me we can exchange ideas but I still think it's neuromuscular it doesn't matter if you haven't had damage in that area it can be coming from the sacral area and you might have done something to your back that you didn't know about which kind of all affect pelvic floor and nerves.... I know people get things like botox and injections and all kinds of things and some help and some don't but I'm going for the least invasive things and it's really helping

[pelvicpainquestions in reply to kalecolbe12]

Thank you. Did you try DCT yet? I read your other posts.

[kalecolbe12 in reply to pelvicpainquestions]

no I didn't mainly at the time because covid-19 started and I lost a lot of business and I didn't want to spend any more money however now 4 months later I am feeling so much better that I don't want to really do anything that might change that progress... But I will keep it as an option... do you know anyone who's done DCT and it's worked for them?

[pelvicpainquestions in reply to kalecolbe12]

I dont. I dont like their sales tactics, but when I read the book my interpretation was that resistance stretching works - you can get most of the stretches on their YouTube channel for free. Example: youtube.com/watch?v=ONbL5bY...(Not working as expected?)

But, I dont personally know anyone who has done DCT that worked for them. A lot of the comments look fishy / like they paid someone to post but I could be wrong.

The idea that resistance stretching, when TrPs are cleared works better at building up the muscle compared to regular stretching makes sense to me.

[kalecolbe12 in reply to pelvicpainquestions]

Yeah I'm skeptical about a lot of things for this disorder but I will check out the YouTube video thank you and I will continue to seek out people who've done to DCT to see if it really works ...I am in touch with two people who just bought it and they're not related to it at all so let's see if it works for them.. I'll stay in touch... Also you might want to go on the Facebook pelvic floor dysfunction group, which I'm a member of a couple...really good feedback and very helpful friendly people

[pelvicpainquestions in reply to kalecolbe12]

Thanks this one right just requested

facebook.com/groups/PVDsupport

[Benhur1 in reply to kalecolbe12]

Hi Kalecolbe12

I really glad to hear you're feeling better now. I have followed your posts and very happy for you.

Can I please ask what treatment and plan you're following making you feel better from the pain you were experiencing.

[Lucas1960 in reply to kalecolbe12]

This is very informative and helpful - I wish I had come across something like this when I first started experiencing pelvic pain roughly ten years ago. I did most of the tests and treatments you cite with little luck. I found a pelvic floor pt in Los Angeles, where I live, who did help... but it was always short lived. I eventually talked to dr wise and attended the clinic last October. That’s what put me over the edge and I’m essentially pain free now. The book is helpful but it’s no substitute for attending the clinic.

Everyone is different but for me, beating it was mostly understanding the mental component of the condition and the destructiveness of catastrophic thinking.

While there, Tim Sawyer located my internal pain areas and gave me a map of them. Just seeing this made me feel better because I realized it was no longer some abstract thing. And I was taught how to heal the inflamed tissue causing the muscles to tighten and spasm.

But as said, what was most effective was learning about the necessary mental adjustment that will calm your body and allow your pelvic floor to relax. It takes a lot of time and can be very frustrating but it works. It’s a form of meditation they teach you.

Once I started seeing results I realized this was very beatable and i progressed exponentially. I’ll occasionally have pain. For example, I felt the same familiar muscle pain last week... but I didn’t panic, realizing it would go away after a day or so. And it did. Before that, I hadn’t felt any pain for months.

Having a positive, optimistic attitude, IMO, is vital... when I was in constant pain, my life was dominated by fear and discomfort and it was a vicious cycle. I was desperate for a pill or injection that would cure it... but nothing like that worked for me.

I’d be happy to go into specifics of exactly what worked for you... if you want that info.

[pelvicpainquestions in reply to Lucas1960]

Thank you so much! Can you elaborate on your meeting with Tim? "Tim Sawyer located my internal pain areas" - did you do an internal and external examination?

Was he at the clinic? I'm only seeing him for an hour next week.

I know this may sound a bit crazy but Ive seen some of the best PTs in LA (Stephanie Predergast, Julie Sarton) and I didn't feel like they had exact answers - like exactly which muscles was causing the pain.

Was Tim really detailed, and did he know what he was talking about? Did others experience relief from the clinic?

[Lucas1960 in reply to pelvicpainquestions]

No problem!

For sure. He was at the clinic. I saw him once a day every day I was there. He did an external and internal examination, locating all my trigger points. The external ones are fairly easy to find. He’ll just move his hands to various spots on your body, asking if you feel pain when he presses on the trigger point. When you do feel pain, he writes it down on a body chart. He did this internally too. This, obviously, was much more painful... but it really wasn’t that bad. Because you’ve already have pt, you’ll be prepared for it. Then the next day, he’d recheck the spots to make sure they were still tender. For me they were. Basically, he explained that the tissue inside a person without pelvic floor dysfunction is soft and supple. For people with the condition, it’s rigid, like cement.

At the end of the clinic he gave me a diagram of my trigger points... which allows me to administer trigger point therapy on myself. It shows me all the spots I need to hit. If your trigger points are shallow enough, you can use your fingers. For deeper ones, you’ll need a wand that Tim and dr wise created.

He’s very detailed oriented and definitely knows what he’s talking about. He will help you figure out the exact muscle areas that are causing your pain. It will be very specific. I’m not sure he can figure this out in one session but he might be able to. It’s awesome that you’re seeing him.

I’ve heard of the pts you’ve mentioned and I’m sure they’re good but l believe Tim is on another level. From my research, he’s essentially the best in the world at this.

You’re not going to be cured in one visit, as I’m sure you know, but you will come out of it with specific info and things you can do.

As for others experiencing relief from the clinic- I’m not sure as I don’t keep in touch with any of them. Though I am fb friends with one of them- I’ll ask. However, they did bring in a few people who attended the clinic in the years prior and they were cured.

I think the reason it helped me so quickly was that I had a super positive attitude going in. I really wanted to get better, would ask constant questions, etc. Some attendees seemed despondent and didn’t participate much. It’s basically a self help program... designed to show you how to treat yourself. So you get out what you put in.

[pelvicpainquestions in reply to Lucas1960]

Thank you, very helpful.

[Lucas1960 in reply to pelvicpainquestions]

No problem! You’re doing all the right stuff- you’re going to beat this.

[kalecolbe12 in reply to Lucas1960]

Yes I agree 100% I am also doing pathways chronic pain app which has essentially the same ideas... I think if we look at it logically we can see that we either/and had a lot of stress, maybe a car accident or a fall or the death of a lived one...even a type A personality.....ultimately I think stress causes it and the diaphragm breathing and stretching and meditation and positive attitude is essential.... At least we should try all these programs and it does take a long time especially doing some Pelvic PT... Imaging CT scan and MRI should all be done... If we really can't find anything then there is IBS which could be a part of it but doing these programs .. wise Anderson protocol, pathways , curable ect should be tried first

[Lucas1960 in reply to kalecolbe12]

You’re spot on on all that stuff. I’m definitely a driven, type a personality who works in the film industry, which can be stressful. I think the stress and tension is definitely the cause of it.

For example, I met a guy in his early 20s at the wise Anderson clinic . He had only experienced pain for a few months, but it started after a super emotional, traumatic incident. Another patient, who was Italy, started feeling pain after a girlfriend broke up with him. Another patient had a very strict family who controlled his every move.

So the mind body thing is essential. Once you accept that you can beat it- and that it won’t allow it to dominate our life- you’ll be on the road to recovery.

A few tips to try, in this vein, that helped me:

1. Don’t hide the condition from people- especially if they’re sympathetic. If you’re in pain, be honest and talk about it. If you have a friend or partner who is understanding and willing to listen, be very open with them.

2. Don’t let it dominate your life. Even if you’re feeling bad, don’t cancel plans. Don’t hide. Just go do what you’d normally do if you had no pain. Often, after a few hours, you’ll forget about the pain because you’re living your life.

[kalecolbe12 in reply to Lucas1960]

Yes those last two things I do.. I talk about it openly... I even put it on Facebook for all my friends to know what I was going through if I couldn't attend an event or something and I'm quite as social person ...I run my own business and sing with a band so I just wanted to be upfront which I always am usually....then I am also going out and still doing things and staying busy although equally important for me I find is to get a lot of rest and not sit for long periods of time unless I have my special cushion with me .I lie on my side to watch TV and movies because mine is mainly rectaI and I don't want to put excessive pressure on the levator muscles and nerves.... Sounds like we're on a similar path and it's good to talk to people who understand

[kalecolbe12 in reply to Lucas1960]

Can you tell me the form of meditation that worked for you...also where were your trigger points?rectal?and/or other places on your body?you know I'm just gathering as much information as I can since I know the mind thing is huge but just wondering if you can share as much as possible since I won't be able to afford to do the Stanford wise Anderson I've lost so much money in this dystopian nightmare and not sure if they are even doing the clinic at this point...oh another question I have....do you have pain or irritation after BM???.. thanks

[Lucas1960 in reply to kalecolbe12]

Sorry just saw this! The meditation that worked for me was paradoxical meditation - simply, just telling yourself to embrace the sensation of relaxing over and over and over again. I have external as well as internal trigger points in the rectal region. I don’t have pain after a Bm but did in the past when my pain was not under control.

I can write up a list of stuff you can do in lieu of attending the clinic.

Another thing that helped me was a low dose of amitriptyline. Starting at 10mg building to 25mg nightly. This helped calm me. It has some side effects and takes some time to kick in. I spoke a to a few other people at the clinic who have success with this medication.

[Skye22]

Took about 5yrs to get a definitive diagnosis of levator-ani syndrome. My pubirectalis muscles "lock" in painful spasms making sitting a painful impossibility!!

When my muscles "lock" it makes the normal process of having a Bowel motion somewhat impossible. I have little to no feeling in rectum and complications of Bowel, bladder, pelvic and Abdominal adhesions have lost the normal "pushing" mechanism.

TREATMENTS: Daily trans anal irrigation and manual extraction.

My saviour, internal/external vaginal trigger point therapy with my PT. in conjunction with 3mthly botox injections into pubirectalis muscles with my urogynaecoligist, and bladder neck injections. This treatment does not cure my symptoms as damage is quite severe, rather it helps me "manage" symptoms and lessens severity of flare ups.

I believe there is no single cure for all, rather a combination of meds/treatments tailored to suit individuals conditions and symptoms.

I am very fortunate in Scotland to having an amazing medical team who consult and support me in coping with living with these debilitating conditions.

[Konagirl60]

I’m curious to know if you’ve read about the pudendal nerve and what it innervates? It stems from sacral nerve roots S2S3S4 in the ischial spine. It carries sensation from our 1. external genitalia, to skin around the anus/rectum, 2. it’s the primary nerve of the perineum, 3. It carries sensation to the motor supply to several pelvic muscles including the external urethral sphincter AND the external anal sphincter.

Do you have tingling sensations? Where are they? Do you have pain urinating? Are you losing urine?

Can you sit pain free? If not, where is the primary pain? How would you describe the pain? Burning? Electrocuting?

What about bowel movements? Can you go? Are you losing stool?

How is your sleep. Are you being woken up in the night to urinate? When you lay back down is the pain excruciating? Can you even get back to sleep?

I think you likely need a good nerve pain modulator. I don’t recommend Gabapentin. There are class action lawsuits in the US about the problems this med causes. I’d try Amitriptyline or Nortriptyline at bedtime first. Ask your doctor or see a neurologist.

If you do have spasms from levator ani or other pelvic muscles you can try taking magnesium instead of Flexeril. It’s your call.

Pudendal issues in males is often confused with prostatitis. I’d get other opinions from neurologists or urologists. Good luck.

[pelvicpainquestions in reply to Konagirl60]

I originally had peeing issues - urgency, feeling full after peeing, weakness in stream. I am familiar with TrPs and worked on myself on my abs, and a lot of these conditions resolved.

Right now, I have a tingling, throbbing sensation in my lower and behind the scrotum area and my perineum area. A few days ago lower back started tingling a bit. The pain is 1-3 out of 10 and mostly manageable with medication. Without medication I find it quite distracting and hard to work.

It hurts when I sit. In the AM I am fine but as the day goes on, it gets more painful.

Re: Nerve issue

I have had a CT Scan, doctors say the spine looks normal. Perhaps a MRI with contrast can show better picture of nerves.

I like your idea of seeing a neurologist to rule out nerve issues as it has been 3 months since PT.

Re: Drugs

My pain doctor mentioned Amitriptyline, although we agreed we are not there yet.

The Gabapentin lawsuits are due to the Pfizer's subsidiaries marketing tactics previously, the drug's effects in my understanding are quite mild compared to other options.

[kalecolbe12 in reply to Konagirl60]

What problems have you heard about gabapentin?

[Konagirl60]

I tried Gabapentin and didn’t feel safe driving a car. It made me a zombie and it did nothing for my pain.

Yes, see a neurologist AND and urologist. Good luck.

[Konagirl60]

Constipation, Blurred Vision, severe dry mouth, nausea, dizziness.

It’s an anti epileptic/ convulsive med that is used off label for herpes virus infection and for herpes zoster. ( shingles ) Is that what you’ve got?

[kalecolbe12 in reply to Konagirl60]

It's very helpful for a lot of us who can't take other meds....virtually no side effects....of course there are people who cant take this and take other options ....we all have to find our own way