Neuropathic itch and spine fracture

[sailor_moon]

Hi,

Just wanting to know if any fellow PN sufferers suffer from what seems to be neuropathic itch in their genital area and if it is a common symptom? And if so. what is the best form of relief for it? i have tried everything form lignocaine gel, to antifungals, to antihistamines to steroid cream...all of which do nothing except aggrevate the issue.

This is my main symptom, as well as severe nerve like pain down one side of my genital area, lower back, butt cheek and thigh, which is worse with sitting.

MRI report shows that when all this started I actually had a fracture in my s3-s4 sacral spine that, despite me having a number of falls and going to doctors saying I have a very sore lower back, i got fobbed off by the medical system as usual and this is what I have ended up with due to no proper treatment. The fracure has apparantly healed since but there is acute angulation at the s3-s4 sacral spine and Pudental nerve Entrapment is likely..

Any advice at all would be very much appreciated.

I am seeing a physio next week after being rejected and put in the "too-hard" basket by a previous physio so hopefully she can help.I have not had any physio so far. I also undergo a Hyaluaronic acid injection at the end of the month.

[Violet M]

I had severe neuropathic itching at certain stages of my PNE journey. I used capsaicin (soothenol brand) to calm the itch enough to help me sleep but I warn you it burns. It shut down the itch long enough for me to get to sleep. You can dilute it some if it burns too much. I also used a lot of ice.

Violet

[sailor_moon]

Thanks for your reply Violet, much appreciated.

Can I ask if anything else helped stop your itching at all? Or did the itch only get better after having surgery? Did physio or botox or anything like that help at all?
I tried taking tramadol last night coz it was so bad and it surprisingly helped a lot, but today its frlaring right back up again...I havnt been this flared in ages! Its driving me insane as I have been flared up for a week now and have no idea what has caused it!

[Violet M]

I can't say physio helped the itching directly. Overall physio may have helped in the healing process after I had the nerve entrapment released. I never tried Botox so I don't know if it would help.

I experienced 2 stages of itching -- one just before the severe PNE pain started at the beginning of my PNE journey, and one during the healing phase after PNE surgery. It's interesting because Dr. Antolak told me that the healing stages might mimic the way the initial symptoms started only in reverse order. To some extent that was true.

So, with your diagnosis of PNE are they saying it's the spine fracture at S3-4 with the angulating bone that is causing the entrapment or are they saying the PN entrapment is lower down? What are your options as far as getting the angulated bone shaved off it it's impinging on the sacral nerve roots?

Violet

[sailor_moon]

The doctor hasnt even mentioned surgery at all at this point , maybe because I havnt tried physio or other methods such as botox? He wanted me to have 3 months of physio before he went ahead with anything else...but because no physio has wanted to take me on it has been very difficult.

I worry about wasting time on physio only to have to have surgery anyway. I have constant nerve pain on one sude, just off center to my bum crack, its strange because this pain wasnt here to begin with...its gradually appeard over time, the last 12 months it has gotten significantly worse. I dont kniw what this means and it scares me. Could this mean the fracture hasnt healed properly?

I didnt get any detailed specifics on the type of possible entrapment, just that I have had a fracture and that it appears to have since healed? He didnt mention anything about the angulation of the bone, it stated it on the MRI, but nothing was said to my face about it. You have made a very good point, about the bone causing entrapment and needing to be shaved off, now that I know this is a possible issue, I will definitely ask him about it when I see him in 3 weeks time.

I see the new physio tomorrow...I really hope she can help me!

[Violet M]

I have constant nerve pain on one sude, just off center to my bum crack, its strange because this pain wasnt here to begin with...its gradually appeard over time, the last 12 months it has gotten significantly worse. I dont kniw what this means and it scares me. Could this mean the fracture hasnt healed properly?

Not sure what it means. One possibility is the same thing that happened to me - the longer the pain went on, the more pelvic muscles went into spasm causing more widespread pain and symptoms.

I would be interested to know how PT went for you. Did the new physio have any insights into what's going on with you?

Violet

[sailor_moon]

The Physio was much much much better than the other horrible one I went to, and she was disgusted with how I have been treated. This physio has a 100% money back guarantee, if they can't help you, you get a full refund.

She tested my pelvic floor and noticed a slight weakness , and also noticed that I have a bit of trouble fully relaxing it.

She is starting out slow with my treatment and going to work our way up, as she said she wants to identify the main cause of the actual pain and what makes it feel better, and if she throws everything at me it makes it hard to pinpoint, as well as overloading me with information.

At this point she wants to get my pelvic floor sorted first and then move on. She said she wants to move onto my back later as well but needs to get this right first. She is also getting me to keep a bladder and bowel diary as these often tie in with the pudental nerve [I get constipated a lot since having this pudental problem!], and also gave me a questionnaire to fill out.

She said she has dealt with pudental neuralgia but has never treated someone who has had it for this long. she does think she will be able to help me though.

I hope I can get this pain level down with her help, its driving me insane....3 and a half very long hard years have taken their toll on me in every aspect of my life.

Unfortunately she is heavily booked so I dont get to see her until the early December. So I am practicing 2 second hold pelvic floors in repetitions of 6, 3 times a day.

[Violet M]

SailorMoon, I'm not sure exactly what the PT is having you do but it sounds like she is recommending strengthening exercises. Is that correct? If you do have pudendal neuralgia generally pelvic floor strengthening exercises such as kegals are not recommended because they can make your symptoms worse. So, I would ask the PT about this and proceed carefully. Even if you have a weak pelvic floor, your muscles can be tight, overly contracted, and in a state of constant spasm. Strengthening exercises can just exacerbate this state of over-contraction. Did the PT say anything about whether your pelvic floor muscles are tight? Was the pelvic floor examination painful at all and did it cause a flare-up? All of these things are important to take into consideration as you proceed with PT. Hope the PT goes well for you.

Violet

[sailor_moon]

Hey Violet,

I have heard that kegals can cause the condition to worsen but I have been doing them without much issue at all. I am seeing the specialist in a couple of days for a nerve block/hyaluronic acid injection so I will ask him for his advice on the matter and see what other info I can get about my situation.

PT didn't say anything about my pelvic floor muscles being too tight, just that when I relax I'm not relaxing fully. The examination wasn't painful and the exercises havn't caused any flare ups, so I guess that's a good thing?

I find out of everything, the worst flare up for me is my period, it gets so so much worse!I have no idea why and I am not sure if it is typical of women with PN to get flared up during their period, especially the start of it. I do have hormone issues and havn't been tested in a year or so, so I was going to ask the specialist of he could do a blood test to check my hormones just in case, i also use an Estrogen/Amitryptiline compund cream too. And another bad flare up is when I have had a big day at work doing lots of bending and lifting ect.

I just wish this would go away :'( My whole life has been on hold for the past 3 1/2 years and counting. I am such a burden on my husband and my mum... My mum said that this will never end....it just keeps going on and on. Treatment and real help with this condition is so slow...I feel like I am just wasting what should have been the best years of my life.

[Violet M]

If PT isn't causing a flare-up, that's great, and maybe worth pursuing further. I can't say for sure about kegals for your situation. I just know that for me, some of the stretching I did that was recommended by the therapist wasn't a problem at first but over time began to cause problems. I think the symptoms crept in slowly. I was doing 300 kegals a day to try to strengthen the pelvic floor. It wasn't really helping strengthen anything because the real problem was bad ligaments not supporting the pelvic floor. There's only so much you can do with Kegals if you have bad ligaments. Kegals can cause increased pelvic floor tension for many PN patients, but maybe you will be different. Also having a period causes a flare-up in symptoms for many women with PN. It was always a bad time for me. I think you will just have to follow your instincts on whether the PT treatment is helping and whether to continue with it.

I understand your feeling like a burden but I don't agree with your mom that this will never end. There was a time I thought it would never end for me but in the end I was able to get treatments that helped. Sometimes it is a matter of trial and error to figure out what is the right treatment for you but please stay strong and keep your courage up because most likely you will eventually find something that helps.

Violet