Hello,
I would highly appreciate any feedback and tips, as well as a possible *diagnosis* so I can speak to my Doctor about next steps. It's been a long 2 months but I will outline everything that has happened up until now. I am not sure if the first few items are relevant but as this all lead up to my suspected Pudendal issues I will include the full story. Needless to say my mental health has suffered immensely over the past 2 months. I was/am a healthy middle aged male with a good career until this hit me by surprise. I could never have imagined this and would never want anyone else to go through what I have.
Early June
I noticed some small red bumps on the glans of my penis, which I thought was result of masturbating or a reaction to the coconut oil I used as personal lubricant. I had no worries at this time as I thought it would clear up.
Early June
Two weeks went by and I became extremely anxious as it did not clear up and in fact started looking more red, but with no itching or other sensations. I suspected 'Balanitis' so I tried to self treat with clotrimazole and another ointment. I am circumcised so fungal infection is unlikely (in addition to lack of itching/burning).
Late June
Visited a family doctor who said it didn't look like any infection and I should wait it out to see if it clears. I had him test me for all STDs to rule that out (all negative).
Early July
Visited a Urologist, who suspected it to be some form of genital eczema. He prescribed Hydrocortisone 2.5% cream and told me to apply twice daily for 2 weeks. After 4 days the entire area looked red and worse off so I discontinued. Over the next week i noticed that my glans skin and part of the shaft had thinned/atrophied as a result of the steroids. Then did research online and learned of the risks involved in applying steroids to this area as the skin is already thin and it absorbs the steroid at a much higher rate. I still had no pain at this point but the penis wasn't looking like it used to. This triggered more intense anxiety/panic attacks as I was worried about it ever looking normal again.
Late July
Started experiencing what I can only describe as 'nerve pain' that consisted of tingling around my genital area. Noticeable while walking as it brushes up against shorts etc. Initially thought it was minor jock itch but eventually realized it was not itching but what seemed small electrical shocks (not intensely painful but very annoying nonetheless). About a week later, I started experiencing tingling in the underside of my penile shaft, much like what you feel during sex or orgasm. This of course triggered a lot more anxiety. It came and went for a few days, and I noticed even when I masturbated it did not subside. This is when I learned of Persistent Genital Arousal Disorder.
Early August
Visited a different family doctor that was recommended to me. I explained everything and provided her some medical literature about Genital Dysethesia and PGAD. The case studies mentioned successful treatment using Pregabalin where the symptoms were gone in 1-3 months of treatment. I felt good about this and we agreed to try Pregabalin starting with 75mg. However the first night I took it, while laying in bed my leg went numb and I felt lightness in my chest which triggered an anxiety attack. I therefore discontinued the drug and will never take it again.
My anxiety continued to increase, as did the genital dyesthesia symptoms. But now unlike before, I started getting sensations not only in my penile shaft but in the area between my anus and scrotum , where I suspect the pudendal nerve is located. At this point I start learning about PN and PNE. My anxiety went through the roof and I landed in the ER (also due to my leg numbness which didn't subside). They basically didn't find anything wrong and prescribed some Ativan and said to follow up with a neurologist.
Been taking Ativan sparingly as I am fully aware of the drawbacks (withdrawals, rebound anxiety, etc). It seems to help with the genital nerve pain, until it wears off. Now I am going to go back to my family doctor to figure out what to do next.
QUESTIONS:
Is it possible the nerve issue is connected to the use of a low potency steroid cream that was only used for 4 days? Or is this just coincidence?
Is it possible this was all triggered by the intense and prolonged stress/anxiety that has built up over 2 months, causing muscle contractions in the pudendal nerve area? I am aware that stress can cause a lot of physical symptoms in humans.
What treatment option would you recommend aside from continuing with Ativan? I am thinking asking for Flexeril next to try to calm down the area.
Has anyone experimented with using natural supplements to resolve this? Turmeric/Curcumin comes to mind. It is anti-inflammatory with a lot of other benefits. The reason I ask about this , is that I successfully treated a severe case of Carpel tunnel by taking curcumin about 6 years ago. This was after an ER visit where the doctor said I would likely need carpel tunnel release surgery. After about 3-4 weeks of taking curcumin 2x daily it calmed down significantly. I changed to a different mouse (more vertical style) and haven't had issues since.
Thank you all so much
My Story
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- Posts: 15
- Joined: Thu Jun 25, 2020 9:44 pm
Re: My Story
Bro,
Stop masturbation. This triggers the pudendal nerve. And start walking. This helps.
Did you masturbate a lot?
Greetz
Stop masturbation. This triggers the pudendal nerve. And start walking. This helps.
Did you masturbate a lot?
Greetz
Re: My Story
Basically it is true but only partially. Masturbation especially prolonged with heavy clenching and stretching is challenging all the pelvic strucures (muscles, fascias as well as nerves). Then comes the orgasm which is like tsunami for those heavily challenged and utterly tensed structure. Result is a flare-up, lasting from several hours to several weeks. What was always astonishig for me is how is this pain always delayed - it comes never same day but 1 or even 2 days later. Theys say tohat post-ejaculatory pain is a hallmark of CPPS, almost all men do have it to certain degree. But we must see the big picture:not only pudendal nerve but also muscles like bulbospongiosus, ischiocavernosus and pubococcygeus are heavily thrashed if you have chronic pelvic pian. But, - last year I had several completely painless orgasms - maybe the muscles were loose and more cooperating or anxiety was lower. I dont know, consider that as one of the many enigmas of CPPS/PN syndrome.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
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- Posts: 2
- Joined: Mon Aug 17, 2020 2:56 am
Re: My Story
I don't masturbate a lot any more even though I have the PGAD symptoms (tingling in the shaft). I am also beginning to experience very high amount of pain in my perineum, for which I am currently trying to manage with Ativan and Clonazepam. If there is any advice to get through this please let me know ASAP. Thank you.
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- Posts: 15
- Joined: Thu Jun 25, 2020 9:44 pm
Re: My Story
Could you please describe how you get the symptoms?
Did you fall, or had any acute trauma?
Greetz Erik
Did you fall, or had any acute trauma?
Greetz Erik