Male 30, 4 years of pain....query pud... - Pelvic Pain Suppo...

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Male 30, 4 years of pain....query pudendal nerve

Jayw13
Jayw13
29 Replies

30 year old male...pain in perinium, anus, lower back, testicles and inner thighs. I know that my muscles in anus are very tight and often get the sensation that there is a lump in there and have torn several times after bowel movement (bowels all normal) . I've been examined 3 times by GP, no piles, no prostate issues. They have dismissed my reports about muscle tightness and link and have only given me creams for a fissure (which they haven't been able to see). I work in an office (11 years now) and sit all day (i try to move every hour). When I push my perinium I can feel a tight lump...pain eases when I lay down and never disturbs sleep, it always starts about 20 minutes after waking up. I do have a lot of stress (Looking after 2 family members with cancer, and juggling full time work, renovatinga house and supporting my partner through depression). If anyone has any idea on what is going in, one GP told me no link between stress and muscle tightness!!!!! I wonder if it is my pudendal nerve......

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kalecolbe12

I have same only female .. mostly rectal and I hope you can see a pelvic floor physical therapist ASAP.They will do an evaluation and also a muscle relaxer has helped me....my pt has given me breathing and stretching excercises which are key to help and also I have a rectal valium suppository if I need it.Once your muscles are this tight the pudental nerve can get trapped or irritated by it and it's going to take a while to ge things back to even near normal...I have been in pt once a week for 5 months and I am definately turning a corner now...stress has everything to do with this issue and of course the sitting ....you would benefit from a donut cushion to sit on at work....I have had this for eight months and I am very proactive about it....doctors and even specialists don't understand the pelvic floor so thats why a pelvic pt is the best person...message me if you want to talk

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Jayw13
Jayw13
in reply to kalecolbe12

Thank you ever so much for the reply, I feel as I'm going mad! I'll order a doughnut cushion now and contact the local physio s tomorrow. I just can't get thought to my gp that this is the issue. Seen all 3 at the practice and been prescribed hemmoriod creams (2 didn't even look). I saw my regular doctor Wednesday after I felt the area split inside and passed blood....I knew it was going to happen the night before.....I know it is stress as I used to get migraines all the time, now my stress heads South lol.......I find the entire issue embarrassing! My boyfriend doesn't understand how much it impacts life, I don't want to travel or go out. I've Googled...diagnosed myself with everything!!! Piles, fissures, yeast infection , procitis, sciatica....

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kalecolbe12
kalecolbe12
in reply to Jayw13

Yep no one understands unless they go through it. ...you simply can't explain it..I just got coping mechanisms together and thank God I only have to work 2 days a week now as I am older but I had the same experience as you where they thought it may be a fissure and the surgeon was all ready to do an lis procedure.My pt has a lot of male patients and she told me that it takes people a lot of docs and misdiagnoses to finally realise it is the pelvic floor.. muscles and nerves...remember you need a pelvic floor physical therapist not just a regular physical therapist...

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Jayw13
Jayw13
in reply to kalecolbe12

Lovely thank you...feel much more positive. Cushion is on order for delivery tomorrow. I find symptoms change all the time, sore pain, burning hot, burning cold, itching, prickly skin, ache...it's a pain in the butt!

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kalecolbe12
kalecolbe12
in reply to Jayw13

Good on the cushion . Are you in the UK? I'm from the UK but I am in Arizona the last 38 years... My whole family still there though...it might help to join a chronic pain group that's what I did here and it really helps to talk to other people... I was going to start my own group and I will do that if this doesn't work out

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Jayw13
Jayw13
in reply to kalecolbe12

Yep in the most Easterly point of the UK (Lowestoft). My nannies cousin moved to Arizona just after the war (she married American soldier)

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kalecolbe12
kalecolbe12
in reply to Jayw13

My sons are 31 and 34 so around your age...they love England!!!

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Lucas1960

I have very similar symptoms/situation. Sounds like you have pelvic floor dysfunction, which has many different names. Last week I attended a seminar in Northern California that tackles this issue. Look up the wise-Anderson method and contact dr. Wise. He’ll talk to you on the phone. He had the same condition. I found the seminar extremely helpful. It’s for men and women and combines physical therapy and other techniques. The pt is basically the worlds expert on internal trigger point massage, which is key in alienating symptoms. If you want more info, hit me up. Lukeheyne@yahoo.com.

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Jayw13
Jayw13
in reply to Lucas1960

Thank you for the reply, I've had a Google and shall.be watching the YouTube videos on this.....in the UK, finding it difficult to find anyone trained in this area for men

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Lucas1960
Lucas1960
in reply to Jayw13

No problem! Yes it’s a very unique problem. There were people from China and Italy in the seminar I attended. So people travel far for it. There is one medication that will help it- amitriptyline at 25mg. It just helps with the pain. Do not get any pudendal nerve injections or any surgeries - you will regret it and it won’t help. The condition can be treated by physical therapy and, surprisingly, a form of meditation that helps alleviate stress and return your muscles to a relaxed stare.

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kalecolbe12

Can i ask what meditation works for you?I have found cyclobenzaprine helps too and also gabapentin....

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Lucas1960

The goal of the seminar is to give up all drugs - which I think is very possible. But prior to attending it, I suffered for years - maybe 4 - before I tried amitriptyline. Starting at 10mg then going up to 25mg always before bed as it makes you drowsy. This reduced my symptoms by 60 percent or so. It took about two months to kick in but it works. Cyclonenzaprine also works but it is addictive and should only be used sparingly. Amitriptyline is not addictive. It works because it helps with anxiety. Gabopentin did not help me, though I only took about it for a few months. So try amitriptyline.

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Lucas1960
Lucas1960
in reply to Lucas1960

This is the clinic I attended: pelvicpainhelp.com.

It was a combo of men and women. It’s not cheap but highly recommended. I consider it the best thing I’ve ever done for my health.

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kalecolbe12

I don't find the cyclobenzaprine addictive in fact I am slowly coming off it.My doc said Amitryptiline has more side affects and it makes you gain weight,but who cares if it works?hahaha

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Lucas1960

Weight gain is definitely a side effect. I haven’t gained weight only bc I changed my diet.

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hill-top
hill-top
in reply to Lucas1960

Meant WAnderson not S&A. Sorry! (I have read their book A Headache in the Pelvis)

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hill-top
hill-top
in reply to Lucas1960

Are you going to do the S&A week's course, or do you know others who have done it and with what outcome ? I have looked into this but don't really know if their approach works/helps.

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Lucas1960
Lucas1960
in reply to hill-top

I attended it a few weeks ago. Highly recommended.

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hill-top
hill-top
in reply to Lucas1960

Has it reduced the pain at all yet ... or is this a long process of following the protocol for several months plus before you can know if helpful or not? You sound very positive about it so does that mean you know you are on the right track, and if so on what grounds? Sorry to be asking so many questions, but have thought about this course over a long time.

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Lucas1960
Lucas1960
in reply to hill-top

Absolutely - it has reduced the pain but it's not a quick path to recovery. Their protocol requires 2 to 2 1/2 hours per day and they said it could take 8 months before symptoms begin to significantly reduce. But I've already noticed substantial changes and this was only a few week ago. I consider it the best thing I've ever done for myself. The seminar itself can be painful as you're doing internal physical therapy every day. But it's so worth it.

I'm very positive because finally -- after maybe 8 years of dealing with this -- I have a specific way to treat this and it's working. And it doesn't involve expensive doctors visits or medication. It's stuff I can do at home. I also came away with an understanding that my pain is being caused by my pelvic floor muscles being extremely tight. They have to be retrained to relax to a normal state. This is difficult but very doable. They brought in people to talk who have had this condition but have recovered completely.

No worries about the questions -- ask as many as you want. I know how painful and lonely this condition is.

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JH19

Lots of good advice here. You are far from alone in your pain. Could you ask for a standing desk at work ? Could help a lot

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Jayw13
Jayw13
in reply to JH19

Yeah I need to get in contact with our occupational health. Pain was terrible last nigh, spent the day sitting at the hospital with my grandad whilst he had chemo. It's eaised at last!!!

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Buuldog

Sorry to hear that you are suffering with this infliction, I do not want to depress you but your symptoms sound the same as mine these started 30 years ago !! I have had several attempts to find a solution but unfortunately the medical profession do not seem to understand this illness and will refer you to the pain clinic as their only remedy.

If you are in the UK my suggestion is not to waste any more time waiting for an NHS appointments to see an Urologist, ask instead to see someone who specialises in pelvic pain.

I believe that you are correct in saying that at least some of the problem is with the muscles in the pelvic floor, I am currently looking into physio for this but there are not many people in the UK that have sufficient knowledge to carry this out.

Sorry not to be able to be more positive but if I can save you months or years of waiting for NHS appointments only to come to a dead end this might be of some help.

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Jayw13
Jayw13
in reply to Buuldog

Thank you for the advice, I agree that the GPs have no training on this. I do believe that stress plays a significant role in it, and will be looking at ways to better manage this. Today the pain has gone, but I know it will flare up again.......Have contacted physio and waiting for a call back regarding pelvic floor assessment. I haven't yet found a way to relax things, it just seems to happen!!!! Will keep updated on here, I did manage to get rid of the pain for about 6 months, not sure how!!

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Skye22
Skye22
in reply to Jayw13

Many similar symptoms many different names for pelvic dysfunction I think this is what makes it difficult for getting a definitive diagnosis. After 30yrs of multiple doctors, operations and treatments, when I was referred to a specialist bowel/bladder physio she diagnosed underlying pelvic floor dysfunction (levator-ani syndrome). I have been attending my physio for 4yrs and she is my guardian angel!! She supports me with multiple conditions and part of my treatment is trigger point vaginal manipulation which gives instant release of pelvic floor spasms , and I see a Neuro gynecologist and colorectal surgeon who perform botox injections into pubirectalis muscle. Combination of treatments help to alleviate crippling pelvic floor spasm and chronic pain in pelvis, vaginal and rectal areas. However, these painful treatments only alleviate pain for a short time about 2wks, but I get some time to be a more "normal" person who can sit on their bottom!! I take 50mg of ammitriptyline in the morning and 75mg at night, it acts as a pain block and helps with nightly sleep pattern. (non addictive). For me it is only now that I can say I get excellent care from the NHS but it came at a great loss to my health over the years!! Specialist physios are a rareity and I think it's a bit of a postcode lottery. I wish you good health and hope you can find a way to a diagnosis and treatment that works for you.

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Jayw13
Jayw13
in reply to Skye22

Thank you, I do think the physio is the way to go....I'm going to try further afield as none local seem to be knowledgeable in this area

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Peanut67
Peanut67
in reply to Skye22

Nortriptyline as effective but not sedating. In same group of tricyclic antidepressants used for pain. Best wishes

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Peanut67

Ask your GP for a colonoscopy only way to eliminate doubt about 'lump' etc. They would go on to do a sigmoidoscopy if need to see deeper. If your GP anything like my practice you would have to be assertive about this. Best wishes

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rugby13

Think you might have levator syndrome what i have google the symptoms

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