The pain I’ve mentioned in my groin is becoming really unbearable. I’ve talked about it in previous posts but I’m now desperate for answers. I have a few doctor appointments lined up and have been chatting to a few guys both on this site and off who have some interesting ideas as to the cause, but if anyone else has experience of this please get in touch.
The pain is felt throughout my groin, but particularly in the testicles and penis. It is pretty much constantly there, but increases in severity as the day goes on and after prolonged periods of sitting. My libido is poor but right now I just want to resolve this pain as it’s draining me both emotionally and physically. I don’t know how much longer I can tolerate it, but what choice do I really have?
Are you getting nocturnals or morning erections? I think it might be a lack of blood flow to the area. Do you exercise? You might want to try some supps like tongkat or horny goat weed to encourage nighttime/morning erections.
Hey, Chrisis, I didn’t have that problem, so I’m probably not the best person to give you advises on that, but I was wondering, are you on the methylation protocol? Because I had a very bad tooth nerve problem that completely disappeared when I started the methylation protocol. And it was very quick, I mean, possibly even the same day I started, because I only realized afterwards that the problem was gone.
Thanks for your responses Hopingforthebest and LivingDead.
I don’t think it’s a bloodflow issue, as a I do get occasional erections, although not as many as before I took this poison. I go along with a nerve damage/inflammation theory. It kinda feels as if I’ve got a hedgehog stuffed down my pants. It’s so excruciating at times.
Here is one of the theories I’ve received by the moderator of a finasteride forum. Any thoughts would be appreciated!
[i]"Finasteride blocks the conversion of progesterone into Allopregnanolone (ALLO). Allo is a substance very necessary for the nervous system, for its correct ability to withstand stress. So, for the period you were taking finasteride, the medication caused a lack of ALLO in your nervous system, but you kept having a normal life, going through the usual stress situations we all go (not to mention the normal metabolism activities that cause stress to the body and require allo).
This lack of ALLO combined with the ongoing stress situations caused a surcharge on your nervous system. This is understood by the body as an aggression. When any aggression happens, the natural response from the body is inflammation, because inflammation helps preserve the tissues. Basically, your body is reacting to the fact that you are low in allo and probably GABA too. By correcting the cause, there is a great possibility that the inflammation ends without you having to take corticosteroids. You will be correcting the cause, so the immune system has no reason to keep reacting.
So what you need to do is to replace GABA and allo. The best course to do this is through medications called benzodiazepines. They replace GABA and help increase ALLO in the nervous system. In my experience, the benzodiazepine you should take sould be Bromazepam or if it is not sold in your country, Alprazolam is efficient in treating PFS patients. You should avoid Clonazepam if it is indicated to you. It will not give you the same results regarding PFS, plus it is much more difficult to taper off when discontinuing.
The standard dose to treat anxiety is enough to treat inflammation problems from PFS. With Bromazepam the standard dose is 3 mg every night, and with Alprazolam it is 0.5 to 1 mg every night. Usually, i see PFS patients take benzodiazepines from three to eight weeks , depending on the severity of the problem. If you feel normal after three weeks, there is no reason for you to keep taking it for more time. It should be a temporary medication only and please seek medical supervision to do this. When discontinuing the drug you need to reduce the dosage gradually. Don´t let this discourage you, it is safe to take these drugs for a short period of time and you will benefit from its use.
After you correct the problem, it may occur again a few years from now if you go through very stressful episodes. But you will be creating a ‘stock’ of GABA by using the medication, and it will be harder for the problem to return. And if it does, you can always use the bezodiazepine again for a day, or once a week or once a month, if the problem returns."[/i]
Another guy (on this forum) had this to say:
[i]“I have the same issue - aching/burning/tingling in my groin pretty much everyday. I think it’s pretty common in people with PFS. The only thing that has helped at all was corticosteroids, more specifically methylprednisilone. A few doctors I’ve seen think the pain is nerve inflammation, which should respond to the steroid treatment I did. Unfortunately, I only got partially better (although the pain almost totally went away).”
Regarding benzodiazepine effects on inflammation, it’s not entirely clear what effect they have. While they do work through the GABA pathway, they don’t actually increase GABA or allopregnanalone. They just act on the GABA receptors themselves - basically they mimic GABA itself. If it’s the case that our nervous systems are in a state of overexcitement, I suppose that it’s possible benzodiazepines could be beneficial in trying to calm it down but that’s just speculation. There’s no hard science that proves that. The biggest benefit, in my opinion, would come from reduced stress, which really has been huge for me. The klonopin helped get me out of my constant fight or flight response, which was reeking havoc on my life and on my health.
I did come across this study on the peripheral anti-inflammatory effects of benzodiazepines in mice. It looks like there are others too.
In my opinion, benzodiazepines are safe and effective, so definitely worth a try at least. Just be wary of their addictive potential, especially if you try alprazolam (xanax).[/i]
Hope they both don’t mind me posting their exact words, but I want to throw this out there to a wide audience to maybe reach a consensus as to my best treatment options!
I have two theories… I went to go see Dr. Goldstein (who is super-caring, super-helpful dude) out of San Diego. He was asked to be the specialist for the class action Propecia case, or at least one of them for that matter. Anyways…
My shaft hurt like heck… It felt like my body was attacking my penis… It was probably a 6 out of 10, but super irritating, almost like an arthritis of the penis…
Well, turns out I had Peyronie’s Disease. The Dr. could feel the plaque within my penis. I could feel it too and see it as he stretched out my penis. It was almost a lump. 1% of guys contract it because of genetics, or injuries to their penis, but it can also be induced by certain drug inhibitors (I really don’t know what this means, but I read that last statement somewhere). There are many who took propecia who are getting this. I think propecia induced Peyronie’s. Look up Peyronie’s online. It’s mild bleeding within the penis that basically causes a build up of plaque or scar tissue. You can’t really cure Peyronie’s but you can treat it. Supposedly, it can be a mononucleosis sort of thing where it brings itself to an end after having it for two years or so. You just sort of have to live with it for a while. Studies show that ingested vitamin E can help with this, because E is great for preventing or breaking up scare tissue.
I feel better after this treatment for sure, but not entirely cured. I’ve still in the process of being treated.
I had mine treated through Goldstein. I’m curious as to what happened with you. Can you give me a follow up?
My second theory was that my pudendal gland was aggravated. You can look this up too. If the pudendal gland is irritated, it can hurt numerous other parts of your body. What’s weird though is I don’t know if my pudendal aggravation was induced by propecia. Usually it’s caused by injury.
Did you try any of the above stuff? I’m having the same problems. They know my pudendal nerve is aggravated. They’re suggesting a nerve block. Should I look at this as a solution, or the benzodiazepines? Thanks!
I don’t think I have Peyronie’s Disease myself, as I can’t feel anything physically different down there.
I went to my sexual health doctor yesterday and have been referred to my GP to get a course of benzos to see if anxiety is the cause. I’ll probably start that next week and see if it helps. If no success with that then I guess I’ll have to consider corticosteroids.
I also have a urologist appointment in May which might give some more clues as to what’s going on.
Sorry I can’t be of more help in your situation, you seem further along than me because at least you’re undergoing treatment with some success.
A word of advice. Don’t take benzos! Taking them for more than a few successive days can, and in most people, produces a raging addiction.
Imagine not being able to sleep for 3 days straight. I don’t mean bad sleep; I mean not being able to shut off or slow down your mind for one second no matter what you do.
Hey Chrisis,
Thanks for the speedy response…
Okay. So Peyronie’s seems to be pain concentrated in the shaft primarily, or at least it was for me.
I ALSO have the pain you describe off and on. It was worse a month or two ago, or more frequent at least where you balls hurt, your shaft hurts, and for me my inner- thighs felt tightened/semi-flamy.
So Goldstein put me up in the stirrups (the one’s used for women for geinocological exams) because I described this pain to him… He pressed on various part of my under-groin area on on my groin etc. He pressed on one area and literally, I screamed in pain. It was more like an “ouch” vs. a cry, but it was like a 9 out of ten in pain… he then said, “That’s not normal”. He admitted that pressing there would cause discomfort for most people, but not the excrutiating pain that I was describing. He then asked me if I had been injured, like if I had fallen on a fence. I said no… and that’s true. He was sort of surprised because he said the pudendal aggravation I had, or tenderness down there would typically be caused by some sort of trauma… but I hadn’t had any… I’m really at a loss to how it happened, unless the propecia messed me up. What’s tough though is I don’t think propecia could cause that much trauma to a nerve, you know? Unless the pain is redirecting.
I literally at this point cannot sit without having agitation because my lower butt cheeks feel burny/inflammed/stingy when I do so.
I know I’m all over the place but I’m typing kinda quick here.
I think I may have traumatized my own pudendal nerve because in the months prior, I was consistently sitting on my foot (almost half indian style). I did this to alleviate the tightness/groin pain you and I are describing, primarily in my scrotum. I play a lot of cards, so I’d do this almost all the time. I think the pressure of my shoe being down there all the time aggravated it. Doing that with my shoe helped, or simply walking around or taking a hot bath would alleviate the scrotum pain. Anything to increase the blood flow.
Anyways… .He said that we could consider doing a nerve block for me.
I’m thinking this might be the corticosteroids that you mention. A block is done via an injection (I believe it’s either one or two injections. You might have to go back on the second day). This is a procedure that’s used as a treatment, but also a diagnosis, because if you get it done and you’re not feeling better, it reveals that the nerve was never really the issue in the first place. If you get it and you feel better, it shows that you did have nerve issues because of the ameliorative results. Does that makes sense?
I’m strongly considering the nerve block. The only problem is that I’m guessing it’s gonna run 300 to 500 to do it. One of Goldstein’s helper Dr.'s told me that most urologists do not know how to do nerve blocks, or wouldn’t be trained to do them. Some pain specialists may know how to do it, but they wouldn’t have the same mindset as a sexual doctor like Goldstein would have, therefore wouldn’t be able to be as precise and intentionally with the placement, possibly yielding worse results. I was told by the Dr. that blocks sometimes eliminate the pain for 2 months, 6 months, or even permanently; it just depends on the person.
Goldstein and my pelvic floor physically therapist both explain that the pudendal nerve is almost near your anus, but its sensation/feeling thingies run up into your scrotum, penis, inner thighs and I think even lower buttocks. So even though it’s way down there, it wraps up under you right where you and I are hurting.
I’m super interested in what you said about the following quote. I know it’s not from you. I’m going to try to email this to Sand Diego where Dr. G is and see what he and his helpers have to say… . do you know anything more about the below thing?
Let me know if you have any more qs. I feel we’re getting somewhere. God bless This lack of ALLO combined with the ongoing stress situations caused a surcharge on your nervous system. This is understood by the body as an aggression. When any aggression happens, the natural response from the body is inflammation, because inflammation helps preserve the tissues. Basically, your body is reacting to the fact that you are low in allo and probably GABA too. By correcting the cause, there is a great possibility that the inflammation ends without you having to take corticosteroids. You will be correcting the cause, so the immune system has no reason to keep reacting.
So what you need to do is to replace GABA and allo. The best course to do this is through medications called benzodiazepines.
And btw , I had a PT suggest groin stretches for me to alleviate the groin pain in my scrotum that you guys are describing.
It exacerbated things so bad… it hurt even worse the following few days. Same thing: took a jog, felt fine. One day later, horrible aching and tightening. It’s gotta be nervous system stuff.
Also Chrisis,
My testicle pain diminished after a while, for me now, it’s strictly tightening and pain in the scrotum, and same sort of feeling in the shaft. Was your testicle pain an ache? or what? what did it feel like?
I’ve heard some guys describe the scotum pain almost as if it tightens to their body, like their scrotum is in shock.
I went to my GP today and have been prescribed a short course of Diazepam/Valium. I’ve actually had a period of relief from the pain and heightened libido the last 3-4 days, so might wait awhile before starting. I’d like to think I’m recovering naturally, but I’ve had those hopes before only for them to be dashed.
It seems to me that benzos are a less serious intervention than cortosteriods, which is why I want to try the Diazepam first. That said, I’m worried about what tenyearuser said about the raging addiction. Assumed that was just the case in long term use. Unfortunately I’m in a situation where I have to try something…
To describe the pain I feel, it varies to be honest. Sometimes it’s a mild, numb, achey sensation. Like a headache but in the groin. Other times it’s quite intense spikey pain, like a hedgehog is in my pants. It can very debilitating, which is why I’m considering all of these drugs! Desperation forces men to do much crazier things: http://www.huffingtonpost.co.uk/2014/03/28/mark-goddard-chopped-off-left-hand_n_5050797.html
To answer your other question about the advice I received. I followed up with a few questions and have pasted the response I received below. I don’t know if it will shed any light for you, but I can’t offer much more. It’s best we all share and have access to as much potentially helpful information as possible.
Hope this all helps. Please let me know your thoughts.
[i]Hi,
Sorry i took long to reply. I am going to answer your questions one by one, so it makes it easier:
Do you base your advice on your own experience or your research?
I base my advice on my research. I have been studying pfs for a few years now, and it has been three years i started the blog.
Since the begining, i ve thought the lack of allopregnanolone to be one of the main issues with pfs sufferers. Many of the symptoms can be related to a low level of ALLO. So, since i started the blog i have explained this to the visitors and to who ever write to me. Many men have decided to try taking a benzodiazepine for some time. The response from them is positive, most report to have improved from some pfs symptoms after the use of bromazepam or alprazolam. Specially insonmia, panic attacks, agitation and axiety related pfs symptoms. However it showed to be very effective, in my opinion, to end the commonly described crash. It end the crash, brings the person to a more normal state and it also reverses penis shrinkage in the first stages of it
You mention patients so perhaps you are a doctor yourself?
I am not a doctor, i work in research, but not finasteride related. Unfortunatelly i can not disclose any personal information in the blog or through email as i have seen a few attempts to shut down the blog. The reason i started researching finasteride is because i have someone in my family who took the medication and developed PFS. He also benefited from the use of Bromazepam. Please remember that the intention to talk about these medications is to inform you about alternatives you may have and any decision you may take to take a medication sould be discussed with your doctor.
Second question, will the drugs you recommend help with libido, or just nerve inflammation?
It may help a little with libido, but it won´t cause a major change. From my understanding, libido issues after finasteride use is a combination of a few problems. Only one drug will not reverse this.
If it won’t, is there anything you can recommend to kickstart my libido?
This is the hardest issue to reverse. It will take time, you need to boost dopamine, boost allopregnanolone and GABA, make sure your hormones are normal range (not necessarily high, just normal range) and boost the HPT axis.
The few cases i have seen when the men improved from low libido, it was tha last issue to be reversed. It took years of regular exercise, good sleep, improved diet, etc.
i.e. to use Selegiline for high prolactin?
How long has it been since you quit finasteride? 2 years? How high is your prolactin? What is you estradiol (e2) test result? From my understanding this is an issue that corrects by itself with time in men with PFS. I believe men with PFS should avoid the use of too many medications. You should use only what is necessary. So please give me more information about this. How high is your prolactin, and what is your e2 test result?
A member I’ve been talking to on PropeciaHelp.com said that benzos won’t help with nerve inflammation pain, but it’s worth a try before taking sterioids surely…
Benzodiazepines do not cure inflammation, but any inflammation is a result of the action of your immune system. If you provide the body with what it needs for an specific problem, the body has no reason to keep the inflammation going on. You have two choices here: Fight the cause or fight the consequence. By taking steroids you will be fighting the consequence. I surely believe it is worth a try taking a benzodiazepine instead of corticosteroids. But i can see that it is hard for any doctor to prescribe you this kind of medication for this reason, unless he has a good understanding of PFS.[/i]
What I’m going to try to explain is kind of confusing and I wish I could just call you to explain/ converse over this, but I’ll try my best because I understand you’re in pain and I want to help you…
What worked to stop my hedgehog right away was doxycycline (I explain below), stopping vigorous exercise, and possibly the interferon I got injected into me to treat Peyronie’s. The one I think helped the most for me, though, was stopping exercise. I’ll explain below. It’s kind of confusing; I’m sorry.
Ok, so the pain you’re describing is exactly what I used to have a few months ago. It literally was super annoying (“hedgehog” says it well), caused me to shift all the time when I sat. Oddly though, the last time I experienced it was severely, or really at all was in Jan 2014. I freaked out and went back down to Dr. Goldstein. That’s when they discovered my pudendal issues and that I had Peyronie’s. Goldstein said the pain I was describing COULD be caused by Peyronie’s, but it was tough to say. He said that the hedgehog pain I was describing was not common stuff he heard from PFSrs, but he did say he had encountered many PFSrs who got Peyronie’s. Anyways, to be sure they did an ultrasound of my scrotum and testes and said all looked normal and healthy… no STD, no infections etc… That’s when he felt my shaft and discovered the lump. I kept telling him the hedgehog was a different feeling than the Peyronie’s (which was more concentrated stinging in one part of my shaft), but he kept saying it was hard to tell exactly was was causing it. The pudendal nerve could have been irritating it he said because that nerve runs all up your crotch and lower buttocks supposedly, the Peyronie’s could have…
I don’t think though, from what you’re saying that you have Peyronie’s… so I’ll say this…
In August of 2013, I went to a urologist feeling the onset of hedgehog. He misdiagnosed me with epididymitis, an infection behind the testicle. He gave me doxycycline to rid me of it and it made my hedgehog and testicle pain go away bigtime… it’s an anti-biotic that’s great for groin situations and also used by people as a preventative measure for malaria. I took it when I went to Haiti - you take it twice a day. During the two weeks of taking it, I felt wonderful. Three weeks or so later, hedgehog came back off and on.
This is why In July, when I got hedgehog super bad after a vigorous jog, I suggested Goldstein prescribe me doxycycline hoping, hey, maybe it could help since it helped last time for my misdiagnosis of ep. I’m almost absolute certain it wasn’t the placebo effect, but it did make me feel better; no hedgehog.
Also, after this, I stopped exercising all together… tried to eat 3-6 fruits vegs a day, and make sure to sleep 8 hours a night… I still went on walks and stuff to get out into the sun and burn some calories at least.
I both think we have/had hedgehog pain, but it seems like from what you’re saying you don’t have Peyronie’s…
I’ve eliminated all major physical activity… hedgehog got way worse after I took a jog or did the stretches that the pelvic floor PT specialist gave me. I did all these groin stretches to help with pudendal and it hurt so freaking bad in the hedgehog manner the following days. My groin muscles felt loose and relaxed, but hedgehog way worse (penis and scrotum). After they heard that, they told me to stop doing groin stretches. I’m the first patient they’ve had dealing with groin pain induced by a medicine.
I’ve received interferon injections into my shaft. Honestly, this was to fight the Peyronie’s, but maybe it helps kill the hedgehog pain, somehow… interferon is normally used to fight Hep, a disease/infection
What confuses me though were the comments you quoted about the nervous system possibly causing hedgehog… that would explain why it hurts after exercise/stretching…
What is also confusing is why infection killing stuff would help something that was induced by finasteride. Finasteride doesn’t give people infections. Know what I mean?
I want to have Goldstein assess those comments about the nervous system stuff next time I see him in mid April.
Questions I have for you?
Have you tried stopping exercise or limiting it to light exercise (e.g. walking, easy swimming etc.) and seen if that helps?
Have you made sure to sleep 8+ hours and eat fruits/vegetables?
If I were you, I wouldn’t trust me, but I guess you could try the malaria med… it’s only for two weeks, and did serve as a good bandaid for me. It makes your stomach a little upset, but just take it with a lot of water and it’s fine.
How long have you had hedgehog? I think I had it for about 3-4 months.
In sum though, hedgehog has gone away for me I’d say almost entirely… but I haven’t tried vigorous exercise
Maybe it could subside on it’s own?
What do you think of all of this?
I’m sorry you’re still in pain. Don’t feel alone in it bud; we’ll all get better eventually. Hang in there!
If we can talk over phone, I’m totally fine with it. I can give you my email. What state are you in? Peace
CHRISIS… Haha. I always forget something.
I am also currently on valium also (in suppository form 7.5mg) to try to relax my pudendal issues, and create a looser environment for nerves, particularly in my buttocks. The PT and Goldstein both suggested it. I take it right before bed. It helps a lot with calming the nether region.
I’m 6’4 180… and it did not knock me out the way that they said it would… but it definitely had positive effects and made it easier for me to fall asleep.
One time I took one at 4pm and one at 10pm and it totally knocked me out…
Supposedly it’s different for all though.
Goldstein’s assistant Dr. Gagne suggested suppository because it works differently than other drugs like aspirin. It doesn’t go through the blood, it sort of penetrates through your body. So if you can take it, you might want to consider suppository since your rectum is closer to your penis than your mouth is… that has got to be the weirdest sentence I’ve ever written in my life. haha. You know what I mean though.
Alright, feel better soon!
I don’t know if you’re praying man, but I’ll shoot some prayers up for you regardless.
Peace
PS - I started taking valium after my hedgehog pain went away, but it may totally work for you so go for it! It’s a good drug.
Chrisis, if I may deviate a bit from the subject of your thread, there’s things that caught my attention in the quotes you’ve posted that might be interesting for other PFS problems.
About alprazolam. I tried it in the past for sleep, but it never worked. I felt it actually woke me up instead, but I now think I felt that way because it took away a bit of my edginess. The only way I could sleep with it was if I drank alcohol, but if I did I was 100% sure I wouldn’t be able to sleep a minute the next day (unless maybe if I drank again, but you can imagine the state I would end up in with that disastrous kind of life). Anyway, what I wanted to say is that reading what that man says I realized I was probably taking a dose that was to low to make me sleep the two or three times I tried it (0.25 mg) and I decided to give it another try with a higher dose. The first time I tried it again, I took 1 mg. It worked, but I felt a bit sleepy the day after, although I must say I had such terrible sleep during the past two weeks that it might have been just from long time sleep deficit. I tried it last night again (0.75 mg this time) and I had today my first good day in two weeks. I’m not sure I would take it many weeks, but I will take it for a couple of days to see what happens. I don’t remember reading that people on the forum tried alprazolam as a treatment to replace GABA and allopregnanolone. By the way, what’s that man’s website?
Hi, sorry for the delay Californiakid and Livingdead.
@Californiakid, I chuckled a bit at your use of ‘hedgehog’, think that word may stick. Good to see we can still keep a sense of humour.
Thanks for the write up about your history with all of this. As you said, I don’t think I have Peyronie’s, as the only difference to me in PFS is feeling and sensation. There’s no physical change to note at all.
I tend to run throughout the summer and I have done some free weights exercise over the past year. Can’t say I’ve established any sort of relationship between them, but the pain has only been going on for the past 5-6 months, so I dunno about running really. The only thing I did notice is my pain was a lot more intense when I had a period of drinking several litres of milk with whey protein powder.
I could do better. My sleep is not great at times and my diet needs work.
6 months I’d say. Recently the pain has subsided, but I still feel some numbness. I got a prescription for diazepam, (Valium). It’s only a 20 x 2g script, so I don’t know if that’s enough. I’ve decided to wait to see if the pain is gone, but even still I should maybe try it for the numbness and weird sensation I get. I am glad at least I’m not in pain at the moment, but I’d really like everything to return to normal, i.e. no numbness and normal sensations…
Feel free to PM me for my email, or we can do Skype. I’m in England by the way.
I’m glad you found some of the information useful, even if it’s not exactly related to the topic (i.e. pain). When you say you had a good day after taking more of the medication, what does that mean exactly? Good libido?
I should have mentioned that two weeks ago I had to stay up 36 hours to finish some rush work and then fix a problem, and after that my sleep was completely fucked up and I was not able to sleep more than 3 or 4 hours per night.
The second time I tried a higher dose of alprazolam I slept about 10 hours and the next day I was fully functional for the first time in 10 days. I took it again last night, but won’t be taking it again for at least a week. To tell you the truth, I prefer clonazepam for sleep. I don’t really like the way alprazolam makes me feel when I’m taking it and I feel a bit shaky the next day, although it does put me to sleep. My experience with clonazepam is all good, but I can’t take it more than twice a week because it stops working if I take it two days in a roll. Maybe it’s not really a bad thing because by using it this way I can never become addicted to it.
I didn’t see a change in libido from alprazolam. I did see a rise in libido, well-being and sleep with the antibiotics I took to treat a parasite and high gut bacterias, but then I had these 36 hours without sleep that screw me good. Libido is still higher than before the antibiotics though.
Clonazepam is not something that will help you with PFS in the long run, it’s just something you take when your insomnia is getting out of control. I think I will try to take alprazolam once in a while just to see if there’s an accumulating benefit like the guy says, but not many days in a roll because I do feel the quality of my sleep is not as good when I’m taking it.
