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Pelvic Pain Support Network
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Dead End Yet Again

I am writing this after yet another dead end in trying to find some permanent relief from my pelvic pain. So long story short I am a male who has been suffering pain in the perineum and groin for 30 years, this has steadily been getting worse as the years have past.

Over this time span I have made numerous attempts to find a solution or even a diagnosis especially during flare ups when I am rendered disabled, to put this into prospective I have not climbed stairs driven a car or done anything else to spark a flare up in 15 years. I changed my job to one that I could manage 20 years ago, however all of the time my symptoms are getting worse.

I have seen doctors and have got used to the blank stare and the open admission that they do not know what the problem is. So after the latest flare up that has rendered me unable to walk without intense pain, so I don't. I went back to my GP who refereed me to the pain clinic for a pain block, after talking to the doctor he decided that he did not know where the pain was coming from and was not comfortable with carrying out the procedure, he has instead referred me to another doctor for a second opinion. Now this is on the NHS so is unlikely to be within the next 6 months or even this year. In the meantime I cannot walk or do much else therefore I am feeling low and if I was religious would probably consider checking out.

I take Gabapentine but not sure that it does any good. My question to you all is what would you do next, there is a six week waiting time to see my GP, I can see another sooner but I am drained at the moment about explaining my predicament. All hope seems to be lost, I try to look on the bright side but have been doing that for 30 years. Any suggestions !! I feel that I am just counting down my final days in a twisted hopeless way.

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Can you give us more history regarding how the symptoms started and what activities make it better or worse?

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My problem started after a sporting injury when I sustained a blow to the groin the injury seemed to have subsided but about 2 days later I was using a foot pump to inflate a tyre and something went. I then had intense pain for about 6 months. I was young and optimistic and even though I was in such pain I thought that it would get better.

The pain did subside from the original injury which was mind altering but has never gone away, instead I have had flare ups ever since. Trouble is the flare ups are getting more frequent and last longer therefore I spend most of my time in a disabled state.

I am not a quitter and during the last 35 years I have married and held down a responsible job even though I had to change course and move into a desk position. I am just desperate to find a way to spend the rest of my life able to do the normal things like walk the dog without pain. Thanks for your response.

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I really do feel for you. I can't imagine having to deal with this pain for 30 years! I am a female, and am just over a year in. I do at least know how mine was caused.

I saw recently on here, that a lady and her friend are better after completing the David McCoid course freedomfrompelvicpain.com/ , and there is a very recent video on You Tube from one of them. David McCoid had pudendal nerve pain for years himself and had two unsuccessful operations, and is completely recovered, and now helps others. I anticipate I myself will sign up for the course, but am waiting to start physio locally first, plus gentle swimming.

Regarding the nerve blocks, please think carefully, as I am worse after mine. I wonder if you would consider a trip to France where they developed the operation. You could perhaps send a letter to the secretary (I'm sure someone on here would have the contact details). It sounds like you need a definite diagnosis first, and they are able to run a series of tests on the nerves (I've been reading up a lot over the year).

I know how hard it is to be overwhelmed with pain, but please know that we are here for you. You have to believe that you WILL beat this!!

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Thanks for your response I agree I need a definite diagnosis but this is what has eluded me for all of this time, the doctors that I have seen just do not seem to know.

I believe that my problem is damage to the prudendal nerve ,this is resulting in flare ups. I travelled to London by train for 20 years but never sat on the seats even if the train was empty because this would result in pain in the perineum.

I have looked into where in England there might be a specialist for prudendal nerve damage and these are few, I have asked the doctor that I attended for the nerve block to refer me to the UCL in London because I believe that they might have someone there that will understand this problem. The appointment however will not be for months on the NHS and I cannot pin any hopes on this because of my past experiences.

I will look into your suggestions but I am very concerned about doing anything that will make things worse, just to be able to go for a short walk would be marvellous at the moment.

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UCL is the best next step I believe. They will be able do a 3-T scan, nerve conduction studies, and I do believe that they have spinal stimulators as a last resort.

I agree, you have to do ONE thing at a time. Look, 30 years ago the internet wasn't around when you had your injury. You owe it to yourself to grab all the help available. No two people are the same, and so whilst we will offer our advice, the treatment plan will most probably not be the same for you.

You may have a compression injury or true entrapment which only surgery would help to release the nerve. You have probably seen this site for other help on this condition... pudendalhope.info/node/9

Remember, however much pain you're in now, you WILL get better - one step at a time... Don't feel the need to reply, just want to give support to you x

p.s. for the train journey to UCL, purchase a 'bony parts 4" cushion from Putnams, and pop it in a large bag. It's the only way I can travel to London putnams.co.uk/products/sero...

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Do you know much about david@freedomfrompelvicpain.com, I am considering making contact but then it would take people in our position who are desperate to consider this, there are always people out there ready to make money out of people with little hope desperate to find a solution to a problem when the mainstream cannot help.

Do you know any more about what sort of exercises they ask you to perform, right now I cannot even walk therefore the thought of exercise that could result in more pain does seem perverse. Thanks in advance

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Do you know much about david@freedomfrompelvicpain.com, I am considering making contact but then it would take people in our position who are desperate to consider this, there are always people out there ready to make money out of people with little hope desperate to find a solution to a problem when the mainstream cannot help.

Do you know any more about what sort of exercises they ask you to perform, right now I cannot even walk therefore the thought of exercise that could result in more pain does seem perverse. Thanks in advance

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Only what I've read on here I'm afraid.

I've only read about one particular 'monster walk' exercise a while back, and wrote down the details in my file.

I've managed to track down the post, scroll down until you see the post from LucyP......also check her profile as she is still active on here. She mentions that she went to London for nerve blocks too.

healthunlocked.com/pelvicpa...

I personally wouldn't do the exercise myself, without first having a consultation, so I could explain how my pain started after my fall, and where exactly my pains are, as like you I wouldn't want to do more harm.

I'm sure the exercises would be tailored for you.

If you put ' McCoid ' into the search box at the top right, there are some posts.

If you don't think you are able to wait until your UCL appointment, there is no harm in writing to them, explaining your concerns.

It's tough I know...one step at a time.....

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Thanks for your reply I know the sensible thing is not to try any exercise without further medical diagnosis however the NHS waiting lists are horrendous, your idea about ringing to try and speed things up or at least get a feeling for how long I will have to wait is a good one and I will do that tomorrow.

I am going to put a lot of effort into trying to find some way of improving my symptoms, I am not expecting a cure at this stage but just to be able to tone down the pain and be able to do small activities would be a success.

Thanks

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That sounds like a good idea. You could ask to speak to Dr Baranowski's Secretary after the Bank Holiday.

I still feel you need someone to examine you like Dr B first before embarking on any exercise, so that you can explain exactly where your pains are (so many nerves down there).

What I find helpful when I see specialists, is to take a printed image from the computer, and point to the area(s) where the pain is, as personally I get a bit embarrassed explaining to someone I've only just met ........….

bing.com/images/search?q=Ma...

The Dellon Institute have some very useful free booklets on their website, which I gained much knowledge from. I recommend Chapter 12 Pelvic Pain, and Chapter 4 Groin Pain may also offer useful help...….

dellon.com/free-booklets/pa...

This simple clarification was given by Dr Dellon in an interview he gave to Sara Sauder a Pelvic Physiotherapist.....

"Compression: can stem from an injury, but the nerve can be saved with neurolysis."

"Neuroma: ALWAYS stems from an injury, but nerve cannot be saved and requires resection."

You're heading in the right direction, see UCL, to get that expert opinion. I know how the mind works when we're in pain. You have to remember you WILL get better. Stay strong!

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Thank you for your kind words of encouragement and information, I am going to do as you suggest and contact Dr Baranowski's Secretary after the Bank Holiday.

It is hard for all of us who suffer with this illness, everybody else is carrying on with their lives and we remain at home and life passes us by.

My family do not really understand the extent of my disabled condition because I have been able to work and therefore financially there has been no impact. But when things get really bad we need to be able to find support.

Thanks again.

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Hi, I am writing this reply because I too have been under the NHS for eight years with no firm diagnosis and dead ends all the time. Try doing the spit test for internal candidiasis. I’m started doing a seven month protocol and I notice the first thing was that I had more hope. I am convinced this is many people’s problem on this site. I will let people know about how I get on. If you need anymore info please private message me.

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I too have had Pudendal nerve decompression and other operations. All to no avail. I cannot sit without intense pain. I’ve heard that Candida will travel and wrap its self around the damage parts of your body. I am convinced this is my problem having gone through hundreds of reviews about a certain probiotic to find a woman with similar symptoms. The candidiasis attacks people differently. Good luck either way

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Never thought candida would be a problem but recently found a probiotic that actually works and restored normalcy. It’s called megasporebiotic. I can provide a link that describes the science behind the probiotic it is very very interesting.

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Yes please I would be very grateful for that. Thank you

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Sure. drive.google.com/drive/mobi...

Go to “learn more” than “watch” then “meatabolic endotoxemia”. Let me know what you think, I have never seen a company so small run in clinical trials and be a leader in an important field.

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Hey Buuldog

I am a 45 year old female and have had pelvic pain on and off now for about 10 year but over last 3 it gone through roof of pain, so far as i spent nigh on 6 months laying on my bed not being able to work or move.

I had so many ops, being a women the first being laparoscopys for women problems and hysterscopies and the colonoscopy, all for nothing , i kept telling them it was muscular!

So not only was i in pain with the muscle all these ops were putting me out to....

Then i went to physio and she just happened to massage right in my hip groin area and underneath me, so my sit bones and i walked out for first time in years and was flummoxed, i had NO PAIN?

I now see a osteo( unfortunately physio left job) and told him and he now does same once a month and it keeps me goin from month to month...

Mayb “GOOGLE” a good physio, osteo in ur area that specialises in that area, although most will know what to do...

When i had mri it showed two bulging discs so they think it pressing on nerves or upsetting muscles which can very often comes as groin pain not back pain, it quite normal so i would b asking for a mri aswell.. in meantime help urself and find someone that can help u...

Im now back at work and am leading a nigh on normal life.

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I had very similar issues and have been seeing a physical therapist. It has helped. My PT uses a holistic approach with stretches and relaxation techniques to calm the muscles. I can help get you started. Take a break and take deep breaths. It seems impossible but you can relax the muscles that are causing the stress on the perineum. My issue stemmed from stress and a injury caused all sorts of problems including a fissure which triggered the muscle spasms and tightening even worse.

When my issue was at it's worse , I could not walk without extreme pain. After lots of Doctor visits and hard work and learning to stretch and take control of my body again things are much better. My pain is down to about a 2 and sometimes completely gone.

It has taken time to get where I am. 8 months of doctor visits and botox with some relief and 1 month of Holistic Physical Therapy so far. The PT has done wonders.

Hang in there and work hard. You can do this. I also felt the depression you discussed.

It is important to find a physical therapist who works with the underlining issues. The mind can take over the body and it is important to understand what triggers the issues physically and emotionally.

Please reach out with any questions. It took me a long time to get to where I am and If I had done the Physical Therapy sooner. I would have saved so much time in less pain.

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Firstly thanks for all of the replies and useful information, My first thought is that I am going to wait for my UCL referral to see if that provides any clarity. Unfortunately I know that this will be months away and because of my past experiences with doctors I cannot be too optimistic, the only difference is that they do seem to specialize in pelvic problems, unlike the Urologist that I have seen before who have just had blank faces and admitted that they did not know what the problem is.

If the appointment is too far away I might look into some of the other therapies that you have kindly suggested, the only problem is that I do not want to make things worse. At this moment I would be happy if I can just go for a short walk, I am just hoping that continued rest will allow me to eventually do this.

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I have had a really bad couple of days and right now if could saw off the bottom half of my body I would, I will have to go back to my GP if I can get an emergency appointment on Tuesday, this will not be with my normal doctor but I cannot wait doing nothing until the UCL appointment comes through some time later in the year.

Could I please ask you all what you find is the best pain medication, I am taking Gabapentine 600mg 3 times a day but clearly that is not working, I need to know what is best and request that the doctor prescribes this to me.

This really is taking its toll, I am disabled but worse of all in 24/7 pain and I need to somehow break the cycle for some kind of relief.

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Buuldog, I am a male and experiencing similar chronic pelvic (pudendal neuralgia) pain, and have been for 5 years. I have been reading this great forum and others for virtually all of that time and have never responded to one until now. I felt compelled to because like you, I have not been able to find a medication or anything else that will work. PT, nerve drugs, anticonvulsants, CBD oil, etc., etc. don't do anything. I take a low dose of Tramadol and it kind of takes the edge off, but that's about it. As a pastor, I have to say that the one way I am able to cope with my pain and the prognosis, which is not too optimistic, is to find reassurance in God's sovereign care over my life. I know this is a medical forum, but the nature of our pain can be extremely tough, and to ignore the power of healing that prayer and reading the Scriptures can have in dealing with our very trying circumstances is to ignore a way of coping that no doctor or medication can provide. I won't start preaching, but would encourage you to pick up a Bible and and read the Psalms and Book of John for encouragement and a hope that can transcend the bad news we consistently get from doctors and specialists who don't have all of the answers we want them to!

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Sorry you are in so much ongoing pain.

My suggestions are to not give up hope of getting a proper diagnoses. It really is one of the most important steps. Although treatment of trial and error often lead to more information.

I am in the Us and female, if it is muscular or tissue related I am a big believer in finding pelvic acupunturists and dry needles. They are both different.

If the tissue needs trigger point release then a series of releasing those trigger point re-educates the bodies to living in the healthy new norm. If there are adhesions well, it requires opening up scar tissue which is possible but a longer but treatable haul.

Pelvic Doctors in the Us are treating these by injecting a series of injections called hydro dissection the needles create the micro incision and both the fluid your body send to the adhesion plumps up the tissue which needs multiple injections for have the tissue start to release for good but possible. Myofascial therapists if they are very good can also help to release the tissue in between injection

Dry Needling is your best bet

These needles open up scar tissue great.

See if there is a pelvic dry needling expert in your area

I hope it helps!

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Never thought candida would be a problem but recently found a probiotic that actually works and restored normalcy. It’s called megasporebiotic. I can provide a link that describes the science behind the probiotic it is very very interesting.

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Hi, it looks interesting but I am into the second month of a seven month protocol with threelac, candisolve and oxygen elements plus. As this has worked before for me I am sticking to this and will post my results when completed.

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