Health Organization for Pudendal Education

Hi all:

I am new to this wonderful forum. I have PNE in my perineal branch. My burning started in February and was diagnosed about a month ago (by my physical therapist with some help from me after reading this website). In a week I have an appointment with one of the doctors on the list on this site. But, in the meantime, I’m trying to function and deal with the pain. I have been dealing with my burning with ice. I put a bag of ice cubes wrapped in a wet paper towel in my underwear and replace it when it melts. I work at home, making this possible. I also often go to sleep with an ice pack. I’ve been doing this off and on for a few months, but for the past couple of weeks I’ve been doing it literally all the time I’m at home (which is most of the time). My PT told me the constant icing was not a problem, but I’ve now read online that constant icing can be damaging to nerves (anywhere). Has anyone encountered problems with doing this? I just now read the thread about icing, so it sounds like others must be doing this a lot too?

Many thanks,
April

I also use ice a lot. Whether it is heat or ice if one has decreased sensation one must be very prudent not accidentally keep the ice or heat on too long. Personally, I usually use a timer when I ice at home, on for 20 minutes and then take it off for a 30 minutes. My thoughts, better to be prudent.

Just curious, why ice cubes in a paper towel? Ice packs or even frozen bag of peas (or corn) wrapped in a towel would be less messy. If you need something vaginally there are recipes on this forum for "slushies" that you can be inserted.

Many thanks, nyt. My husband just set an alarm for me. It does make sense to be prudent about this. A bag of peas would be much less messy. I’ll try it. (I go through multiple pairs of underwear a day but am still wet most of the time.) I did read a bit about the vaginal inserts with ultrasound caps and other devices and will definitely try those soon.
Thanks,
April

Hi April,

Welcome to the forum.

Ice is what actually helped me survive but I know it is somewhat controversial. You might want to read this website on the topic of ice. http://www.rsdhope.org/ice-and-crps.html Scroll down and I think there is an article written by a physician for whatever it's worth. I'm not sure if I had rsd but I used ice in many different forms and I don't seem to have suffered any long-term bad effects from it and I would do it again if I had to.

You can buy Ace brand ice gel packs in the shape of a pad to be used in the crotch area but you might not want to put it directly on your skin. It stays on well between 2 pairs of underwear. You can google the small reusable ace gel pack. It's soft and flexible.

I often fell asleep with ice on which probably wasn't a good thing but it was the only way I could get to sleep. I also used the ice ballons inserted vaginally which can be made with water, part water/ part alcohol, or with ultrasound gel.
Over the counter extra-strength vagisil cream was also helpful. -- walmart Equate brand is much cheaper. If your pelvic floor is overly tense you might also want to try vaginal valium. You can get them in suppositories or I know some women insert the oral pills vaginally because it's a lot cheaper.

Violet

Many thanks, Violet. Yes, as with you, I do not think I could have survived the last few months without ice, and I’m really disappointed to be learning about its risks. But, it’s good to hear that you did not have long-term damage from it. Today I’ve been trying to only use it when I walk (which is when I have the worst pain) or for a while after walking.

I do think my muscles are tense from the pain, and I actually have vaginal valium in my refrigerator (obgyn prescribed it a couple of months ago when she thought I had pelvic floor dysfunction). It didn’t give me relief from the burning so I only used two of them. But I’m going to try it now to see if it at least relaxes me.

Thanks so much,
April

Hi all:

I can now even more definitively answer the question I posed at the outset: yes, constant icing can cause harm. Despite the cautions the forum gave me, I overdid it and gave myself burns on both cheeks. The burns started causing pain last night, but I just assumed the pain was a new wrinkle to my pn. But, tonight I looked and see that I burned the skin. I think they are just first degree burns, so hopefully they will heal quickly. But, everyone else should learn from my mistake and beware of over-icing!

April

Hi everyone

I'm a newbie to the forum.

Apart from the dangers of burning yourself, are there any other dangers with using heat a lot to ease pn? I use either a rolled up mini electric blanket or a rubber hot water bottle for my aching and burning pain and it provides quite a lot of comfort. (With me the heat does make me sometimes not realise that I need a wee as much as I actually do, but I haven't noticed any other ill effects so far, but I would appreciate your comments and to know what your experience of this has been.)

Thanks in advance

Dusty

Dusty,

It doesn’t sound like those heating devices would cause harm, but I don’t have experience with using heat for my pn. I have used heating pads (at a high temperature) for muscle spasms in my back, and it was fine. But, I assume the skin on our backs is less sensitive than the pn region, so I guess it would be sensible to keep the heat low. I certainly regret overdoing the icing.

April

Hi April

Yes, I think you're right - With the mini electric blanket I keep it on a moderate to low setting and my hot water bottle has a cover on it. (The pain relieving effect of the heat is greater the hotter it is, but somehow I've resisted the temptation to increase the heat.)

I hope you fully recover from the ice burns very soon. (I think with the ice it's more difficult to know when you're doing yourself harm because of the numbing effect, so what happened to you is so easily done.)

Dusty

April and others

I have used ice via a plastic drinks bottle for many years now, I wrap it in a cotton cloth and use it on my perineum area, I cannot sleep at all without my ice. If I don't wrap it up enough I too get ice burns which are easily resolved by a chamomile gel and of course avoidance of the area for a few hours, the skin soon heals.
Ice for me is the most reliable pain relief and helps so much.