My symptoms started in 2008, I wasn't unduly concerned and assumed was just haemorrhoids from pushing myself to hard at the gym and tennis matches. Self medicated and lived with it on and off for 2 years using various over the counter and GP prescribed suppositories and pain meds. Never really cleared up so in 2010 GP referred me to Colorectal Specialist who diagnosed Haemorrhoids.
I have had the following symptoms since a Stapled Heamorrhoidectomy operation in 2012:
These two come and go: Numbness and tingling in the perineal area with occasional shooting pains; Lack of sensitivity in the penis with soreness and redness at the tip. (Presents as thrush)
Had every possible test known to man for bowel function over the following 12-18 months. Was given meds for possible IBS with some dulling of the rectal pain
Antibiotics in case of any Infection with no effect
Meds for enlarged prostate with no effect
Several visits to the GU clinic due to the thrush like symptoms (all clear)
Saw 5 separate Colorectal Specialists continually over 10 years
Saw most of the GPs at the local surgery
MRIs, Scans and X-rays for any anal Fistulas or Fissures (none)
Several courses of Injections into the remaining Haemorrhoids (which we all have) just in case these were the problem
EUA (examination under general anaesthetic ) in 2015, nothing unusual was found
Another EUA by different Specialist in early 2017 who recommended a further Haemorrhoid removal procedure by laser
Had the laser operation mid 2017 with no lasting effect so had to conclude was not the problem. After this the rectal pain worsened but was told by the surgeon there was nothing further he could do.
Was then told I'm imagining the symptoms
Was sent for another opinion and a further EUA by different Specialist who injected Botox into my pelvic floor muscles which reduced some of the symptoms but also reduced my ability to urinate effectively for 6 months until the botox wore off after which all the pain returned.
Was then prescribed Amitriptyline as this in a low dose can be effective for nerve damage. Couldn't function mentally on this.
2018 came across the best Colorectal Specialist to date. He located and removed under general anaesthetic a previously missed by everyone Thrombosed Haemorrhoid at the outer edge of my sphincter that had been part of my pain symptoms since the initial operation in 2012.
After a most painful 3 month recovery this operation removed the sharp specific sphincter pain completely and overall pain by about 50%. Unfortunately he was unable to locate where the rest of my internal pain was coming from and reluctantly conceded defeat stating that I would just have to try and live with it the best I could, not what you want to hear.
Interestingly he mentioned he couldn't be sure haemorrhoids had ever been the initial cause of my pain in 2008.
Rather than jump off a bridge I decided to adopt a glass half full attitude and encouraged by the 50% pain reduction I turned my attention to the remaining internal pain which was no longer being added to or being confused with symptoms from the Thrombosed Haemorrhoid.
I had noticed however that during my 10 year period of symptoms I had occasional very brief periods when a particular set of remaining deeper Internal pain symptoms would subside for a while.
I recollected that the meds with muscle relaxant properties such as in the Botox Injections the IBS meds prescribed previously and the Imodium I had taken during periods of diarrhoea probably had something to do with it.
Subsequently I changed my inquires away from haemorrhoids and researched sources of internal anal/colon muscular pain. This threw up the term Pelvic Pain which up to this point had never been mentioned and doesn't appear when researching haemorrhoid symptoms/treatment searches. Eventually I came across a You Tube presentation on Pudendal Neuralgia which described all of my remaining symptoms exactly.
I now believed my remaining pain was a type of Pudendal Neuralgia and was caused by a memorable fall onto my Coccyx tail bone during a tennis match back in 2008 which is when all this started. I also believe the initial op in 2012 and the op in 2017 which has led to so many subsequent symptoms were unnecessary.
Further research for treatment eventually led me to this Pudendal Hope web page and the Sayer Clinic (see Doctors and specialists in the UK, London) where I now receive treatment from Dr Michael Durtnall for my coccyx problem and from Physio Karolina Krzaczek for my pelvic floor muscle issues. There knowledge is second to none and I can't thank them enough.
After just my first round of treatments there was an immediate reduction in pain and subsequent improvement in my mood as there now seemed a light at the end of an extremely long and painful 10 year tunnel.
Fortunately I'm self employed and can work from home as required. There is no way I would have been employable with this condition and a normal social life has been impossible.
My long suffering partner has unending patience and understanding.
Living with constant daily pain as many on here will know is an exhausting and miserable existence, its not great either for those around you, your life is on hold.
I like many others have been through despair and hopelessness, depression and at my lowest there have been fleeting thoughts of suicide. This new found hope and just having a diagnosis can not be underestimated.
Symptoms do start to drift back between treatment sessions but I now have days which are pain free and other days which are not so bad.
The above is just a snapshot, I could write a book about what I have experienced at the hands of the medical profession who just don't seem to have this condition on their radar.
If any of the above symptoms are at all familiar to anybody then I thoroughly recommend to give the Sayer Clinic a call and hopefully It will be the start of your recovery as well.
During this last year I have had 2 more sessions with Michael Durtnall at the Sayer Clinic which has now settled my coccyx issues.
Prior to first lockdown in March I was seeing my Physio monthly to deal with tight internal floor muscles which kept pain at bay. She suggested that my remaining pain was being caused by IBS symptoms resulting in constipation or diarrhoea and causing my internal muscles to tighten.
I now follow the suggested Fodmap diet which regulates my bowel habits and this has been the final piece of the puzzle. If I drift away from the diet my bowel habits and stools will change upsetting and tightening my pelvic floor muscles causing pain and I will need a Physio session to deal with that and get back on track.
I now understand what I need to do to stay pain free which is all about adjusting and regulating my diet which is something not on most specialists radar when treating internal bowel/pelvic floor muscles.
Hopefully this extra information may help somebody. I wish everybody well.