Four months on from ON diagnosis

[Kelly-paino]

Hello,

I was quite recently given a potential diagnosis of pudendal neuralgia with secondary pelvic floor dysfunction and have had one pudendal nerve block (transvaginally) and have been attending wythinshawe pain team for pelvic floor PT. I am definitely feeling some benefit and am less tight pelvic floor wise due to being taught various stretches that I do religiously every day.

Just know that I've got a long way to go yet and still feeling a bit overwhelmed by pain some days. I managed to secure a new job recently (I'm a nurse) and am much happier as I'm able to manage it better dude to much less manual handling and less stress to take home with me at the end of the day.

Looking forward to a much needed holiday that is coming up really soon where I vet a proper physical break from the day to day grind!!

Sending big love out to all of my fellow sufferers out there and hoping to hear of anyone else who is having some success, even if very small. Also to those who continue to suffer due to this horrendously painful condition xxx

[Joolibee]

Hi KELLY-paino. Thank you so much for that positive posting. I'm glad that things are looking up for you. Would that be Dr De Mello's clinic that you've been attending? I am in NW England and used to attend the Liverpool womens hospital. Nerve block injections did not help me enough for me to be wiling to cotinue, sadly. Since last September I've spent more time and money than I care to admit, attending the Sayer clinic in London, where I've been treated by a physiotherapist and chiropractor (it turned out I also have a coccyx problem). I had a lot of internal trigger points that required manual therapy, which has definitely helped. I do believe I'm making progress, but like you, I have a way to go yet. I also do my exercises religiously. I've now got an appointment with a physio much nearer to home, who thinks that she can take over my treatment (fingers crossed). I was wondering, does the physio at Wythenshaw do internal manual therapy? Good luck with your new job and enjoy your holiday.

[Kelly-paino in reply to Joolibee]

Hi Jooliebee thanks for your message. I also looked at the start clinic in London but it was not affordable for me, and I couldn't bear the travelling due to living up north.

The physiotherapist I've been seeing is called Fiona Hart n she has helped me a lot. She does perform internal trigger point therapy. She has found that most of my trigger points are located within the external tissues and muscles n has been able to release a few. I know I can never be cured of this awful dysfunction but at least now I have some tools to enable me to manage slightly better than I did before I had a diagnosis.

I honestly thought I was losing my mind after over 8 years of constant pain that no medical professionals knew what to do with n even tried to convince me that I must be fabricating my symptoms as MRIs, nerve function tests n bloods etc came back clear.

Hope it therapist closer to home is able to help you n look after yourself xxx

[Joolibee in reply to Kelly-paino]

Hi again Kelly-paino. I'm so glad that have found help in managing this distressing condition. I've now seen the new physio a few times and am feeling confident that she is able to help me continue to progress. She is only a half hour drive from where I live, which is a bonus. I'm now trying to increase my meditation and abdominal breathing practice. After making so much progress I'm determined to build on it. I have been told that those who take a positive attitude are much more likely to achieve improvement. All the best for the future and keep smiling 🙂 X

[Betsy-Blue in reply to Joolibee]

Hi, I also suffer with PN. I live in the NW near Southport Uk. Could you tell me where and who is your physiotherapist?

Trying to find a PT that does Internal massage, thanks in advance. Kind regards