I have been suffering with CPPS for 30 years however up until March 2019 I had been able to self manage my symptoms. Things took a turn for the worse in March 2019 and the pain has progressed from mostly underneath to around the pubic bone and above.
Long story short I went to my GP who sent me to the local pain clinic, the consultant at the pain clinic was at a lost at what to do for the best and referred me to the UCLH in London who are supposed to be specialist in pelvic pain. I therefore put all of my hope in the outcome of my appointment at the UCLH, I waited 6 months for the appointment to come through, at the appointment they listed my symptoms and said that I should have an MRI for which I attended 6 weeks later. About a month after the MRI I went back to the UCLH and they said that nothing showed up on the MRI, they referred me onto a group therapy session for pelvic pain starting in June 2020.
I have since received a discharge letter back to my GP, I have therefore spent a year and got absolutely nowhere. I am having a rant here because if nothing can be done for this condition why is the UCLH being regarded as experts with the resultant long waiting times for appointments. I do not live in London and had to spend a lot of time and expense to travel there, don't get me wrong I would go anywhere to get some treatment to alleviate the pain.
So I am back where I started at the local pain clinic and starting to think that there in no hope. I try to tell myself that this is not a terminal illness however it is disabling and if I could be sure of an after life I would be seriously considering my options.
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Buuldog
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so I guess you're in the UK where I'm from but now I live in the US and it sounds like neuromuscular like the pudendal nerve... And or pelvic floor dysfunction kind of thing ...so what they do here for it is pelvic floor physical therapy which works for a lot of people along with the choice of muscle relaxants, gabapentin which is a neurological med which works for a lot of people also cymbalta which works for people and amitriptyline which is an antidepressant and all of these cut pain quite drastically. I am quite knowledgeable now after having pelvic floor dysfunction pain for a year which took me to the emergency room a couple of times... I am getting better slowly with weekly pelvic floor physical therapy and home exercises and breathing which doesn't sound like it would help but it does and also I take a muscle relaxer just at night now but I was taking it three times a day for months...I decided against the Botox and the pain blocks because I want to find a solution instead of just covering it up and I find the muscle relaxants do tend to relax the pelvic floor which is helpful if it is pudendal neuralgia....the pudendal nerve innervates the whole pelvic floor.... mine is mainly rectal but I know men who have it testicular and penile ...women who have it clitorally and vaginally and both can have it rectally..it can be a damaged nerve or a compressed nerve which is where the PT comes in handy.... My pain doctor said it takes a combination of things and and can take a long time to slowly get better and I believe it now although it sounds crazy and a lot of doctors just pass patients around and do procedures that don't help.... There's a book you should read called a headache in the pelvis another one called heal pelvic pain and yet another one called pelvic pain explained all of very helpful ....believe me they are very worth reading. I don't know if you're a man or a woman but there is a man on YouTube called David mccoid and he healed his pelvic floor with a system he has called DCT training.... He will talk to you over email or he will talk to you over FaceTime he doesn't charge anything for that and also doctor wise who wrote headache in the pelvis you can also email and talk to him ...they have different approaches but I know that they work for a lot of people. sorry for the long email but I know how agonizing and desperate you can feel.... Me and another girl started a local group here in PHX for chronic pain and illness and we have one girl with psoriatic arthritis... two of us have pelvic pain and a man I know has testicular pain and then my friend's husband just got psoriatic arthritis out of nowhere... so we are kind of a growing group but it does help to have support oh and one last thing .....the only way you can really see if you have a trapped pudendal nerve is by an MRN which is an MRI of the small nerves you may want to ask for that.some people get the decompression surgery and there is a doctor here in Phoenix called doctor hibner who does it and I know the people in England go to Nantes France to get the decompression surgery.... There is also a doctor who is doing cryoblation of the nerve....I'm not a doctor but I've done a lot of research and I'm very proactive and finding help for myself and other people so if you want to stay in touch with me I'll be fine with that we can support each other... Even if we have to live with some pain we shouldn't have debilitating pain I use a heating pad a lot which helps me and I have a box of tools so to speak so I don't panic so much when I have a pain flare
Me again and another thing I forgot to say was that you have to be to own advocate and insist on the medication to cut the pain which will make you start thinking more reasonably ....insist on the muscle relaxants to start with even if they won't give you the neuromodulators like gabapentin or cymbalta and they're even using Lyrica now which is for nerve pain just insist and don't back down...opioids and regular pain meds don't work as well as these medications for this kind of pain
Hi, my husband is currently disabled due to the extreme pain of CPPS. He is considering weaning off amitriptyline so he can try a muscle relaxer as Kalecolbe 12 has found helpful (cannot be on both meds due to a seratonin reaction). Opioids do not touch his pain.
He is being seen at the University of Washington Pain Center in Seattle and is having a CT guided Pudendal nerve block series starting on February 4th. I will let you know his outcome.
He has been having pelvic PT but we are seeking a different practitioner with better knowledge of pelvic floor pain.
You definitely need to be a strong advocate for yourself and I have read that there are specialists in Nantes, France that are excellent at helping with pelvic pain.
I completely understand your frustration as my husband had verbalized the same feelings as you.
Again, I will let you know his outcome., keep in touch. Kalecolbe12 is extremely knowledgeable and a wonderful source of information regarding pelvic pain.
Thinking of you with hope!
Hi
I also found the UCLH pain clinic totally unhelpful when I went there about 2 years ago. I think the issue is they don't explore ways of reducing the pain much but seem to focus mostly on "learning to live with the pain" and psychological treatments. Whilst these approaches may be useful alongside other treatments there are definitely ways of using medication, physical therapy and various self help techniques which can help a lot in CPPS. Lots of good advice in the posts above.
The books Healing Pelvic Pain, Headache in the pelvis and Pelvic Pain Explained may be helpful to you. Though as you have had this for a long term time you may already be familiar with them.
I also went to UCLH about 11 years ago, very sadly things have not improved at all. I got much better treatment at Bristol and self funded a huge amount of therapies. You do have to become your own advocate with this condition.
I did a lot of reading other people,s stories and what works for one may or may not work for the next person. I wish you all the best.
Hi Lucy, I know this is an old thread but I was wondering if you'd be able to share with me where in Bristol you went? You can PM me if you're more comfortable.
Also, I think I can guess who you saw within the pain team! Sheesh. Sorry you had to go through that.
Firstly thanks to everyone for your response to my post, I have been going one step forward and then back again with a flare, I know that everyone will be familiar with this scenario.
Anyway to put some meet on the bones I was put on Amitriptyline but this did not benefit the pain and instead gave me unwelcome side effects therefore I stopped taking them, same thing with Gabapentin.
I have been offered a nerve block however I am in two minds about this and have up until April to make up my mind. I have made contact with a well known PT in the UK and will be going to see him in a couple of weeks time.
I have had this illness for a long time but it is the new and worse symptoms starting in March 2019 that I cannot find a self manageable solution for, therefore I am hoping that the PT can move this forward. I do not expect a cure but would consider success to be where I was pre March last year.
I have and am considering DCT however because the pain that I have now is made worse by walking I am reluctant to do anything that could increase the pain. This will be an option if the PT has no benefits. Does anyone have any first hand experience with this programme.
So for now I am not taking any medication and this is all that the NHS can really offer apart from a nerve block that I have read mixed reports about.
I have read Head Ache in the Pelvic and some other books regarding CPPS and am expecting the PT treatment to be based on these theories. If anyone has had first hand experience of this approach it would be nice to know if PT helped.
Personally, I’m trying to stay off of going on any of the drugs like Gabapentin or Pregabalin, as in my eyes taking pills to mask or stop the pain isn’t curing anything, it’s just putting a band aid on it and not actually solving the problem. In the end you just end up with a whole bunch of unwanted new side effects and then you can’t get off them. You get hooked!
I actually paid privately in the end and went to see an amazing very well respected Pain Specialist yesterday actually and he said exactly the same thing to me. Try and avoid them if poss.
I have found the best thing for me has been Physio and doing my breathing and stretching exercises religiously. My pain is now at least 50% better and am pain free quite often now. Although do have bad flare ups every so often but these are improving now also, fingers crossed.
I was on Diazepam at the beginning but now have weaned myself off. Conscious that it’s highly addictive. If you drug yourself up too much how do you know if you’re getting better or how are you resolving anything?
Obviously I understand if you have to go on them if you’ve been diagnosed with something that you’ve been told there’s no cure for but that will be my last resort. You can cure PFD symptoms and nerve pain. It just takes a lot of patience, effort and time.
Unfortunately this is the miserable part of Nhs especially in Birmingham Qe h , Sandwell h because the lead doctors work togheter in the Private hospitals around , so if a complicated case come up previously seen by a local hospital they just call each other to make the same decision ,if you are given a diagnosis even if it is wrong no one will be bothered to change it even they know is a wrong one also no further referral to another hospital out of area , only if the patient become a emergency and they have no other solution , also when is about a diagnosis based on clinical symptoms/ history which if not showing up in lab = They just get rid of this kind of patients, nobody check them if they do a proper job , there is not a rule or a time limit for a complain moreover if the patient have the courage to complain he gonna receive an answer signed by several doctors who cover each other for mistakes and negligence also maybe a referral to mental health , so many doctors should be kicked out by NHS and Gmc
Buuldog - if the drugs help take them - no need to be in pain if they relieve the symptoms. I have had Pudendal N for about 5 or 6 years. I found the only thing to help was Physical Therapy. here is a website with info: pudendalhope.info/ Also this book helped me as well - "A Headache in the Pelvis" - I hope you are able to find some relief! Good luck!
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