Health Organization for Pudendal Education

oh poor baby and mom.

I just googled rain and allergies and found interesting connections there. also mold and rain and allergies. maybe you should pursue research there. one pelvic specialist prescribed allegra to me because she said some pelvic pain patients pain resolved with this treatment.

I too have fears for my daughter. She has a few Bowel Movements a month where it is extremely painful and sometimes she says she hurts to sit immediately afterwards... and has been complaining of being itchy off and on... I hope it's just dry skin. I don't feel like I can stay on top of taking care of my daughter with my own pain... i've gotta get more on the ball with this.

my heart is just aching for you and your daughter tremendously, but do not give up. God is with you. He will help you.

Pianogirl,
we have been to an allergist, and had her tested for allergies to more than 23 different things. She has been on several hefty antihystemines.
When I talk about her having itch it is always clitoral and labial itch. Allergies would cause more of an all over itch.
Even the pediatric allergist said she has never seen allergy related itching centralized to the genital area.
There is a first for everything but, zyrtec, singular, hydroxizine, clariton, or benidryl have never relieved her itching even a little.

I am hoping for the 3T MRI, and I am hoping it confirms what I think. That is the pudendal nerve is compressed or entrapped somehow.
Probably do to the severe constipation she has had in the past, an unaligned pelvis, and maybe even from the tear form the swimsuit.
I think the combination of them all at the "right" time just did it.
Now we have to get every thing in alignment and go from there.

Thank you for all your prayers.
I am sure your little one will be fine, keep her from being constipated, lots of fiber......

Sorry for posting things you've already tried... but bravo for trying them! I'm just trying to think of anything here that might help, other than the obvious PNE possibility... just hoping it could be an easier fix for you and your little girl, but I do not discount that it could be PNE either... It sounds like you have a good plan of action.

Clitoral and Labial itch... I wonder if it is an itch (like from a bug bite) or more of a tingling crawling sensation? (I get the tingling labia feeling like things are crawling under my skin)

Constipation heightens my tingle... I can feel a tingling happen as my bowels move past a certain point... so that is definitely connected. And my pain is worse when constipated.

You mentioned her bathingsuit tear? Did she perchance fall on the side of a pool or something like that? Dr. Bautrant said one of his patients had fallen on the side of a pool and that gave her PNE.

Praying for you in this coming year... Jesus please bring them healing and answers soon! Wrap your arms around them and give them peace as they go through this trial together. Bond them and give them relief. Be glorified. Show your love please. Amen.

Mom,

Can't remember if I posted this already but I was reviewing the Nantes Criteria article and was reminded that with neuropathic itch there is not necessarily a need to scratch. It's often a deep itch rather than superficial skin itching. Does that sound right in your daughter's case? Here is an excerpt from the article:

http://pudendalhope.org/sites/default/f ... iteria.pdf

Pruritus
Pruritus is primarily suggestive of a dermatological lesion
(atrophic lichen planus, etc.) rather than a nerve lesion. The
DN4 criteria for neuropathic pain comprise ‘‘prickling,’’ as this
term may be used by patients, but the concept of pruritus
includes a need to scratch which is not experienced in the
context of pudendal neuralgia

I can't really say I agree with the article totally -- I remember feeling a need to scratch -- just that scratching did not relieve anything.

Violet,
I will look at that. No I haven't seen it.
She constantly feesl the need to scratch, however she states that scratching does not releive the itch.

Pianogal,
My reply did not post to you.

Please always think out loud with me. There is wisdom in a multitude of counsel.... I am weighing everything shared and suggested.

Her itch she has always described as a mesquito bite feeling.

Interesting what you say about constipation. I have often wondered if her being more constipated increases her itch.
We were told before the itch started that her colon would take a year to get back to normal size b/c it was stretched form being so severly constipated for so long. ( she has been on myralax since age 2) Just in the last year have we taken her off it. But she may need to go backon as she is straining and I don't think emptying.

Swim suit tear was not combined with a fall. She was playing on a slip and slide. So she was running, jumping, and sliding. But when she went ti ti later there was blood in the potty. I thought she was getting a UTI, I took her in. No UTI, just a tear

Thank you for the prayers. Happy new year.

Interesting what you say about constipation. I have often wondered if her being more constipated increases her itch.
We were told before the itch started that her colon would take a year to get back to normal size b/c it was stretched form being so severly constipated for so long. ( she has been on myralax since age 2) Just in the last year have we taken her off it. But she may need to go backon as she is straining and I don't think emptying.

Swim suit tear was not combined with a fall. She was playing on a slip and slide. So she was running, jumping, and sliding. But when she went ti ti later there was blood in the potty. I thought she was getting a UTI, I took her in. No UTI, just a tear

hmmm... my daughter has been on miralax and stool softeners since the moment we introduced solid food too... but not so much miralax because my dad who is a nurse practitioner said it will create colonic dependence. So, right now my daughter is swallowing one stool softener pill per night 100 mg, and eating one prune. It helps her go almost every day, but still stool is hard most always. I should add apple juice. Before intervention, it would be days, and she would be in agony trying to pass stool sometimes. If you don't have something you're using currently to help your daughter's constipation out, I recommend adding stool softeners, as it will not create colon dependence like miralax will, since it is not a laxative. (strangely, some docs these days say miralax isn't a laxative, but it says it's a laxative right on the bottle. In my mind, the lesser of two evils is colonic dependence compared to PN aggravation, so I'd veer more towards using things to keep the stool moving rather than protecting the colon... but I'd first start with stool softeners and prunes and fiber and liquids... if that doesn't work, then use a laxative.

Swim suit tore... without a fall... if something made cloth rip, something could also have made her skin rip or rugburn kind of effect??? blood in potty? my daughter came back from a bounce house slide with an inch rug burn mark on her back that turned into a scab... so I know it's possible to have that happen with sliding... so that could have been the instigating factor, in conjunction with a history of constipation putting pressure on the other end.

My pain probably started from a straddle fall when I was 4 to 7.... something like that... my mom can't remember exact details, but she said I had bleeding labia. She can't remember which side. When these things happen, you don't think a major emergency will come of it... so it's normal to not take elaborate notes at the time... kids fall all the time.

I'm just thinking out loud here... thanks for welcoming it. I want to help your little baby and help you in any way I can. I will be praying. Lots of love to you both!

I wish something could make the itch less while figuring things out. I know Neurontin actually lowered my pain significantly once I got used to the fatigue it also brought... I have no idea how it would work with kiddos however.

B vitamins help with nerves I think. What else does? She has youth on her side for healing... and more importantly, God on your side and hers.

Violet, Oh believe me, there is an intense desire to scratch for some of us with neuropathic itch. The scratching just doesn't help...it causes skin injury and secondary infection instead. Mom, if she is scratching I would keep her in dermatologic care because of the risks caused by scratching. I eventually learned how harmful and useless it was and began to use topicals only as a substitute for scratching (1st menthol and camphor, least irritating is gold bond cream but they were all irritating - then diluted capsacin). But this requires an act of will as the instinct to scratch is there.

That's what I was thinking too -- that there is a need to scratch -- but it's been so long ago I've sort of forgotten exactly what it felt like.

Pianogal,

The swimsuit was to short in the length of the body, it tore her labia, becuase of the slipping and sliding ( on the slip and slide)
The swim suit itself never tore.

Any special brand of stool softener you use for your little one? I had her swallow one this week at my moms but she had a "sweat " episode within a few minutes. And complained of her chest hurting ( maybe heartburn) She has NEVER said her chest hurt before, so it kinda freaked me out, I don't know if it is possible to be allergic to a stool softener....????