Has anyone been told to sit down MORE to cure PN?

[ClareW]

Hi everyone,

I was first treated at the GU clinic, as they thought that my symptoms were caused by thrush. I did discuss PN/PNE with the consultant there and she said that she was familiar with PN, but had never had a case of PNE. She told me that I should NOT stop sitting, as it would lead to the nerve becoming more sensitive. Her advice seemed a little dubious at the time, as it seemed to contradict other advice that I'd read about. Has anyone else been told to sit more often, rather than less?

I now use a coccyx cut out cushion and my sitting tolerance has improved. Recently, I had to travel and was sitting down for over 6 hours in one day. I thought that I would be half dead the next day, but to my surprise I felt better than I had done in 2 months and there was further improvement the day after - I was feeling about 90% improved, with no foreign body feeling in the vagina/vaginal or vulval pain (unfortunately, I had some PT the next day and my symptoms returned and haven't gone away again).

I'm trying to work out how different things affect my symptoms, but there are so many variables to consider.

[helenlegs 11]

Not that I am aware of Clare,
All I do know is that sitting makes the pain worse and not sitting helps a great deal so if someone said I had to sit more it would make very little sense to me. I know that introducing sitting and sitting for slightly longer times after a cessation has been mentioned but not simply more sitting.
Maybe she meant don't give up sitting completely but introduce it at staged levels???
It is so difficult working things out altogether, sometimes impossible. People do find that things get a bit worse from Physiotherapy but symptoms usually calm down later on.
Take care,
Helen

[Violet M]

It seems like the advice on sitting would be different for PN than for PNE. Theoretically when the nerve is entrapped it can suffer stretch injury when sitting while with PN in which there is no nerve entrapment there may just be very tense pelvic floor muscles. I can see a PN scenario where sitting could rest the pelvic floor muscles that are in tension whereas standing might make them work harder.

Violet

[ClareW]

Thank you for your replies.

It is so difficult to try and work out which factors affect my symptoms. I am considering (not in any particular order) - stress, sitting time, Vitamin D, Vitamin B12, temperature, possible yeast infections, drinking lots of water (for cystitis like symptoms), amount of walking etc. but it is proving difficult

I suppose it is different in every case. There have been two occasions when I have had a temporary significant improvement and I'm trying to discover what caused this improvement.

The first time was when I took a antifungal drug for a week, which leads me to the conclusion that
a) my symptoms were caused at least in part by a fungus
b) the drug in question has other properties (in the same way that amitriptyline is usually used as an antidepressant, but can also be used for nerve pain)
c) it was co-incidence

and the second time was the sitting. I'll keep working on it!

[helenlegs 11]

What about having some PN aware physiotherapy clare?
It could be that any unresolved yeast infection has caused some muscle spasm reaction which has lead to a pudendal irritation?? Sometimes the yeast infection can be resolved but the muscle doesn't learn to relax properly after that problem is fixed or is more prone to becoming tight again with stress or even a postural problem.
If some trigger points are discovered with physiotherapy this could help once they are relaxed with further treatment.
In the meantime a combo of antidepressant drugs with anti seizure medication can also be beneficial. Medication will also help any escalation of problems, which can sometimes happen, in the complicated pelvic anatomical area.
Take care,
Helen

[ClareW]

Hi Helen,

The suggestion about the yeast infection causing pudendal irritation sounds plausible. I've started having some PT with a PN aware physio from Maeve Whelan's list, I've had five sessions so far, but I'm not sure if it's helping yet. The physio told me that it will take about ten sessions to be able to tell [the trouble is, I started taking nortriptyline at roughly the same time, so I will never be sure what is responsible for the improvement (if there is one!)].

I'm going to see my GP on Friday to add Gabapentin for a while, to see if that helps. I'm also trying a TENS machine with help from the physio.

At least I can say that I have tried everything non-invasive when I return to see Dr G

[skyblue]

Hello Clare.

I'm quite sure that in some instances sitting can be therapeutic rather than problematic, particularly in respect of PN. I personally have also found that accidental extended sitting has been a relief, especially to the pelvic muscles. My original PT told me that abstaining from sitting would be most likely make things more problematic.

The difficulty though, is that it's almost like balancing the shower taps; if you sit for too long then you run the risk of aggravating the nerve even further and the resulting pain from that will inevitably make sitting almost impossible.

I guess it's all about finding a happy medium.

[Laura]

Hi Claire,

I totally agree with Skyblue. I have avoided sitting for the past two years and it hasn't done the rest of my body any good. I now have pains in my hips that I never had before. I believe it's coming from lying down too much, doing the things that normal people do while sitting. Four days ago I decided heck with it, I'm going to start sitting. I actually had pain before I sat and after I finish sitting I had no pain. Go figure? I even sat on a hard stool in a restaurant to eat lunch and I had no pain that day or night or the next day. I felt like I died and went to Heaven. . I started sitting too much and by the fifth day I was hurting, just like Skyblue said. I wasn't hurting anymore than I usually do so I guess I have nothing to lose.
I don't know if my pain is being caused by Tarlov cysts or PN or both. I'm going to continue to sit but I'm going to be cautious and not sit too long at any one time like Ive been doing these past four days.

Hi sky blue, how are you doing? Haven't talked to you for ages!

[skyblue]

Hi Laura - getting there. Just waiting for the results of my hip arthrogram. As soon as I know the result I'll post it in the case updates section. How are you doing? Have you thought about posting in the case updates section? I'd love to learn how you are getting on.

[Jane]

Hi Claire,
I am six years post-op and still have trouble sitting. If I travel two hours is the max (limits going too far) or I am in agony. Being on the computer is not good - I think we tend to lean forward a bit. If I go out to lunch with a friend who knows me well they now look for the soft seats, if there are'nt any I have to leave. I do have a cushion but sometimes forget it! Equally standing for too long is not good as I feel as if my insides are literally going to fall out. Laying down is good.
I do try to pace my days but it is not always possible. I have had three beautiful Grandaughters given to me in quick succession and it is so hard not to pick them up when they want a cuddle but some days I just cannot do it. Lifting I know is bad for PNe. I also find bending really not good and tend to do jobs on all fours, like gardening and cleaning the toilet etc. I have had two decompressions TG but still have a lot of pain although it is not as bad as before surgery. I do not know if there is anything else left for me to explore! Pregabalin had horrible side effects after two years, so knocked them off and just take an odd 25 now and again, which contrary to accumulative doses being best, does help me.
Wishing you all out there some help and pain free days.
Jane