My Personal Issues; any advice greatly appreciated.

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

My Personal Issues; any advice greatly appreciated.

Postby thenihilist22 » Thu Mar 09, 2017 8:27 pm

Hello everyone, I’ve been present and observing this forum for a substantial amount of time now, but only initiated the registration process due to the motive of deteriorating personal experience concerning my health condition. Any assistance and advice would be greatly appreciated. My account of my issues can be exposited as such:

Sometime in the midst of 2012, I observed an alteration in the sensation of my penis which remains persistent to this day. The alteration was one of a loss of sensation, both generally and in relation to masturbation and orgasms. I could no longer feel the tingling euphoric effect of orgasms, nor the pleasant sensitivity on the glans of the penis. The anal region was also noticeably less sensitive, and the satisfaction from defecating previously experienced was now absent – and remains so presently. In addition, a mild symptom of urine hesitancy and a loss of sensation whilst urinating was experienced, sometimes with the addition of a burning sensation. Intermittent tingling sensations would present themselves inside the perineum area. Simultaneous to these developments, my psychological state began to experience exasperating anxiety concerning my health, which has gradually worsened to this day. I developed a habit of consciously tensing my groin muscles, which could possibly have become subconscious as well as remaining a conscious action which was intermittently repeated in 2016 due to further exasperation of my anxiety issues. It may be significant to mention that my GP stated she believes I possess a generalised anxiety disorder.

As the years progressed, between 2012 to 2016, the numbness appeared to remain constant, however a worsening ability to achieve erections in sexual circumstances, and the inability to maintain erections, especially due to the lack of sensitivity now experienced whilst interacting with sexual partners. Only direct stimulation of the penis could maintain the erection, and orgasm was increasingly difficult to achieve with sexual interactions, especially from visual or psychological stimulation. Spontaneous erections no longer occurred, and nocturnal erections began to decrease as well. Pain upon ejaculation was experienced from the beginning of 2016. I chose to ignore the exasperation of these symptoms due to the importance of my studies at the time. In addition to these symptoms, I began to present to neurological symptoms consistent with peripheral nerve hyper-excitability which was diagnosed by a specific neurologist as a neurological manifestation of Gluten Sensitivity, given the presence of the relevant antibodies in my blood, the gene associated with the predisposition and the exclusion of any other neurological explanations. Between this period, I also experienced bouts of constipation which I acquainted with my IBS condition.

At the beginning of January 2017, particularly 7th, I recall experiencing intermittent rectal pain whilst sitting, which coincided with a severe episode of constipation which lasted for over six weeks. I had also been sitting for prolonged periods on an office chair whose padding had become inadequate, resulting in the equivalence of a flat seat. Whether these conditions are causally related to the development of symptoms I now possess is uncertain to me. From early February 2017, I had also begun to perceive an increase of discomfort in the groin and rectal regions whilst sitting, which coincided with painful muscle spasms in the groin and rectum. These spasms occur due to conscious actions, or arbitrarily. Such spasms would cause painful aches and sensations, whether they occurred through the penis, groin region or rectal area. I perceived that my difficulties with achieving and maintaining an erection had worsened, in addition to a lower sexual libido/desire. I began to experience sporadic tingling and shivering sensations consistent with what I presume could possibly be autonomic dysfunction of the pudendal nerve, and sensations of tingling and constriction in the scrotum. My entire groin, perineum and rectal area began to feel tight and uncomfortable, and accompanied by lower back, gluteus and lower abdominal aches. The sensation of an object like a tennis ball is perceived in the rectum. Any erection achieved possessed a sensation of discomfort. These symptoms, coinciding with a general numbness of the genital areas, make it profoundly difficult to even achieve an erection, in addition to the localised numbness of the penile glans. Said symptoms are still present, and appear to have been exasperated substantially. My ability to maintain a consistent stream whilst urinating has also deteriorated alongside the hesitancy which was previously present.

Whilst I’m uncertain of the pertinence of these conditions, I would disclose that during my adolescent years I maintained an active and athletic lifestyle, composed of primarily running, boxing and Mixed Martial Arts. More recently in December 2016, I had attempted to initiate a weight training programme, which only lasted a few weeks due to the inconvenient holiday times. As previously stated, the habit of tensing the groin areas was a common practice, especially during episodes of acute anxiety. The majority of this period was spent in prolonged sitting positions. Hopefully some of this information will be beneficial to your hypothesising. It must be stated that as the day progresses, the pain in the specified areas becomes more insufferable despite maintaining standing positions, though lying down appears to alleviate the severity of the pain, even if partially. Each morning the symptoms appear to regress to a more tolerable state, only to be exasperated throughout the day. I’m currently awaiting the initial assessment required before a consultant is allocated by the Manchester University Hospital, of which I hope I am placed under the care of Dr. De Mello, given his expertise in this specific area. I’m contemplating as to whether these said symptoms are the result of PN, the aetiology of which is a pelvic floor dysfunction generated by the years of anxiety and physical habits of tension.

As previously stated, any assistance or advice would be greatly appreciated, in addition to any similar personal experiences others have perceived, or if they have been under the care of said specialist.
thenihilist22
 
Posts: 6
Joined: Sun Feb 26, 2017 5:50 pm

Re: My Personal Issues; any advice greatly appreciated.

Postby Andy_Pablo » Thu Mar 09, 2017 10:22 pm

Hi there. Welcome to the forum. Im sorry you are in pain. I can recognise a few of your issues. I would advise to keep away from any moderate or above level of physical activity. I ignored my symptoms & tried to push through it & ended up being much much worse. Sounds like you have a knowledgable doctor in mind, which is a good start. Have you looked into PT? Any treatments that you can attempt before any potential surgery is definitely a good idea. Surgery should be the "last resort". If you have any questions then dont hesitate to ask & to the best of my experience, I will try & answer. Andy.
Credula vitam spes fovet et melius cras fore semper dicit...
Andy_Pablo
 
Posts: 154
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: My Personal Issues; any advice greatly appreciated.

Postby thenihilist22 » Thu Mar 09, 2017 10:36 pm

Thank you for your response and consideration Andy, and I do desire to acquire a PT in order to establish at least some relief if it's related to the pelvic floor, but unfortunately I'm situated in Newcastle Upon Tyne, and the closest specialist is Dr. De Mello, who I'm hoping also has access to a NHS physiotherapist on his pain clinic team who's knowledgable concerning pelvic floor dysfunctions, and conditions related to pudendal neuropathy.
thenihilist22
 
Posts: 6
Joined: Sun Feb 26, 2017 5:50 pm

Re: My Personal Issues; any advice greatly appreciated.

Postby Andy_Pablo » Thu Mar 09, 2017 11:24 pm

I have struggled with physio on the NHS. Nobody knows about the condition, so it difficult to get help. I am considering a move from Devon to Southampton to visit Ruth Jones for private physio, but it more a recent thought than a plan of action as of yet... She appears to have a good reputation with our injury.
Credula vitam spes fovet et melius cras fore semper dicit...
Andy_Pablo
 
Posts: 154
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: My Personal Issues; any advice greatly appreciated.

Postby thenihilist22 » Thu Mar 09, 2017 11:50 pm

I'm considering a similar choice of seeking assistance from a private physiotherapist in Edinburgh who is documented on this website. It's disappointing considering there is a NHS webpage on the set of symptoms that compose pudendal neuralgia and it's potential causes, but a substantial lack of knowledge within GP services and even amongst specialists. I'm hoping someone who frequents these forums has been under Dr. De Mello who can inform me of their experience with him, and his clinical team. At the least Dr. De Mello should be able to refer patients to the most appropriate physiotherapists.
thenihilist22
 
Posts: 6
Joined: Sun Feb 26, 2017 5:50 pm

Re: My Personal Issues; any advice greatly appreciated.

Postby Violet M » Fri Mar 10, 2017 4:39 am

I've heard William Taylor in Edinburgh is excellent. He's been around for awhile too.

It can be difficult to determine if your muscles are tense due just to anxiety or if there are mechanical issues going on. Either way, PT might help you get the muscles calmed down and in the meantime maybe you can deal with the anxiety issues. But I do agree with Andy about not pushing through the pain. I think it's important to avoid things that increase your pain.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: My Personal Issues; any advice greatly appreciated.

Postby thenihilist22 » Fri Mar 10, 2017 11:56 am

I've read a few accounts of how experienced and accommodating he is. I believe Dr. De Mello does have a pelvic floor physiotherapist named Clare Molyneux but there's no information on these forums or the internet concerning her credentials and experience in comparison to Bill Taylor. I understand that both the explanations of pelvic floor dysfunction and pudendal nerve entrapment for the symptoms of pudendal neuralgia/neuropathy are empirically equivalent. I assume that pursuing physiotherapy would assist in establishing which explanation is the most plausible anyway, and hopefully provide some relief. I appreciate the advice, and I'm currently attempting to create/purchase a cushion for the situations which require sitting.
thenihilist22
 
Posts: 6
Joined: Sun Feb 26, 2017 5:50 pm

Re: My Personal Issues; any advice greatly appreciated.

Postby thenihilist22 » Fri Mar 10, 2017 10:30 pm

Managed to converse with and schedule an appointment with Bill Taylor in Edinburgh for tomorrow; he appears to be a very considerate and genuine individual which is consistent with the accounts presented on this forum. Hopefully he can elaborate on some of my concerns, and despite my lack of investigations such as MRI scans to rule out the less probable causes such as lesions or tumours, the initiation of some physiotherapy could be beneficial both in establishing an explanation and coping with the symptoms.
thenihilist22
 
Posts: 6
Joined: Sun Feb 26, 2017 5:50 pm

Re: My Personal Issues; any advice greatly appreciated.

Postby Andy_Pablo » Sat Mar 11, 2017 12:04 am

Good luck with the appointment.
Credula vitam spes fovet et melius cras fore semper dicit...
Andy_Pablo
 
Posts: 154
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: My Personal Issues; any advice greatly appreciated.

Postby Violet M » Sat Mar 11, 2017 4:58 am

I hope Mr. Taylor will be able to shed some light on your situation. I wish you all the best with your treatments.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Next

Return to WELCOME CENTER

Who is online

Users browsing this forum: No registered users and 1 guest