16 Aug THT- I’ve Been Diagnosed With Pudendal Neuralgia (A Pelvic Floor condition)
For the past week or so I had been dealing with some familiar symptoms. I had Pudendal Neuralgia about 12 years ago and it has recurred.
As I am writing this, I am feeling “beside myself” for having this come back into my life.
What is Pudendal Neuralgia?
Pudendal neuralgia is long-term pelvic pain that originates from damage or irritation of the pudendal nerve – a main nerve in the pelvis. The pudendal nerve supplies areas including the: lower buttocks. READ MORE ABOUT IT HERE.
The only positive I can gleam is that I knew what it was straightaway, having to experience this pain before. Last time, I had no idea and didn’t know who to turn to. So weeks and months of going to various specialists became commonplace, without answers.
Last week my doctor wrote the diagnosis- Pudendal Neuralgia. It felt like it came out of nowhere. Things were going well with my EDS, and this has just shattered me. Not sure the cause, but with EDS I have chronic constipation ( due to Gastroperesis) and that can have a hand in it, if it put pressure on the nerve.
Whatever the cause, it has now appeared, and I am taking steps to help myself, but it is hard, certainly emotionally, as I feel I am starting at square one again
I am so disheartened, as we probably have to reschedule our trip that I have been looking forward to for years. See, with PN, the Pudendal Nerve is innervated throughout the pelvis, and is close to the sit-bones. I experience a burning nerve pain and cannot sit now for long. I did keep my cushion, which is this nerve cushion, that can also be used for other things like back pain, sit bone pain, hemorrhoids, etc. The cushion allows you to put less pressure on the nerve. The last time I dealt with this condition, it took 1 year of pelvic floor therapy ( twice weekly) to feel better.
Just the other day I went with my husband in the car for 1 hour, with the cushion, and there was no way I was going to be able to sit 8 hours on a plane at this point.
What treatment did I use last time?
Twelve years ago, I was given a script for Pelvic Floor Physical Therapy. Well, at the time, I had never heard of such a thing,
The PT is trained as an expert in this specialized area. The work is done to loosen the pelvic floor where there may be adhesions, tight muscles, and nerve compression. This is done internally. I am not going to say that it is painless., but last time I encountered this, it took 1 year to diminish the symptoms and become fully active in life.
Pelvic floor PT is done for many conditions including bladder issues, prolapse, tight pelvic floor muscles causing sexual dysfunction, nerve related problems, such as mine.
Dry needling of the pelvic floor is done now, so this is another avenue I will take.
In addition to pelvic floor PT, I would use ice or heat, take baths, and take walks.
I am also now taking Gabapentin, which is a nerve pain medication.
Friday I must have made 15 calls and talked to answering machines the whole time. I will continue to make calls for appointments.
If conservative measures ( pt, medicine) doesn’t help, there are Pudenda nerve blocks that may be tried.
If you are having any pelvic pain, do see your doctor. They might be able to refer you to a specialist who can help.
I my need a week from the blog,, but may post on IG. I always need a distraction from pain, or else it is all I will think about.