help I thknk I may PNE

[oliviaand]

Please help me. I am new to this site. I think I may have PN. For the past two months, I have been having weird sensations around my anus and vulva, almost near the inside of the thigh. It is kind of like a gnawing, itchy feeling. But, sometimes I get a burnig itch around my anus and vulva. My gyno said there is no sign of infection nor do I have a yeast infection. It only happens when I sit down. If I stand up, then it goes away. Or when I lay down. I don't have any pain yet but I am scared that it may come to that. The thing is I live in El Paso TX and there are no doctors/physical therapists here who are familiar with the condition nor would they be able to help me. I am just wondering if any one has symptoms similar to mine that started like this but progressed to PN. ANother thing is that I don't have health insurance and there are not a lot of specialists here that would be able to help me. My gyno is not familiar with the condition nor does he believe it exists even after I showed him this website. He thinks I am crazy. But, I don't think I am. Please help me. I am going crazy and I am very scared because I have no way of getting any type of help. I have been to the hospital but of course they couldn't find anything wrong. My mom got tired of me complaining abot this so she threw me out of the house. I am now staying with my aunt. I have a part time job (I sit a lot but am considering standing or buying a donut cushion)and I do get unemployment. But, I am afraid that if I do have PN I may lose them both. I am scared that I may wake up with pain or if I sit, I wll get the pain. I have now lost my enjoyment in my life because I don't know what is going on. One more thing, I just had a baby two months ago (I had a vaginal delivery) but he was not big (4 lbs 14 oz) and it was a quick delivery. I know childbirth can cause PN. ANy advice? THank you.

[oliviaand]

sorry for this post but i don't know what else could be wrong. I am just concerned and wondering if anyone had symptoms similar to mine that started out this way and it turned out to PN or PNE. I just need advice on what I can do because like I said there are no doctors/specialists/physical therapists here where I live that are familiar with the condition, let alone even treat it. I am very scared. I'm just concerned, is all. Thank you.

[HerMajesty]

Hi,
I think you have been very astute to get this far in figuring out the problem, with no help or support from doctors or family. For many of us, early symptoms are very subtle and then increase; and also it does frequently start after childbirth. So while other things need to be ruled out, you certainly are not crazy. Maybe some other users could help you compile a list of easier conditions to check before having to deal with PN: for anal and vulvar burning and itching, I think you should check into lichen sclerosis for one thing.
So it sounds like a summary of your living situation is, you are a mother of a two month old, uninsured and underemployed, living with relatives, and dealing with the possibility to a chronic health condition: You really should be able to qualify for Medicaid, have you tried to apply? Any kind of health insurance you can get would help immensely.
Although there are no PN specialists listed in your area, there might be a pain clinic practitioner, Neurologist, or other specialist who will believe you and have some knowledge of such conditions. Unless you can locate somebody else from El Paso here on the board, you might need to do some calling around to find somebody to help you. But there are usually a few decent doctors in any city, if you can locate them amongst the sea of general ingorance you will run into.

[calluna]

Hello Olivia, welcome to the forum. I am sorry that things are so difficult for you at the moment.

Congratulations on your new baby, by the way! I hope that your little one is doing well.

Some ideas -

Did you have any stitches?
Do you have any rash at all?
Could you perhaps have something like a latex allergy?
Did your gynaecologist do a swab before saying that you don't have any infection?
You could perhaps be having a reaction to the antiseptic that was used during the birth.
Did you have anaesthetic or pain meds? - itchy skin can be a side effect.

Ice will help with the itching, but don't put it in contact with the skin - something like a pack of frozen peas, wrap in an old teatowel. You can use this for 10-15 minutes in each hour.

I do hope that things improve for you soon. Please let us know how you go on.

[oliviaand]

hello: thanks for your quick reply. Well, I definitely will ask my doctor to rule out all factors that could cause anal and vulvar itching/burning. Like I said, I don't have pain when I sit, but i am afraid that it may get there. I try to avoid sitting as much as possible (aside from driving my car and going to work,where I sit for five hours a day/four days a week). As for insurance, I don't qualify for Medicaid, just my baby. So, I may have to utilize the county hospital and start there. I did mention this site to my doctor, but he doesn't believe it exists. Can you believe that? Ugh! I am so mad because if it turns out to be PN or PNE, I just have to pray that I will be able to get some type of help soon. Right now, I have been forced to wear loose clothes because I have become very sensitive in these areas as well as the top of my thighs. I purchased a special cushion online so I can use it since I have no choice but to work and I sit at work. I guess I better start saving my money in hopes that one day, I will be able to have a handle on this. Until then I have to hold onto my faith and that God will help me through all this.

I did have an epidural when I had my baby. I don't think I have an allergy to latex. But, I will rule out all things before I pinpoint that it is PN or PNE.

Thank you all:

Olivia

[Violet M]

Hi Olivia,

There may be physical therapists in El Paso who are experienced in treating people with pudendal neuralgia -- the list we have on our website is not an exhaustive list of everyone in the country. Have you checked with women's health at Texas Tech Health Sciences Center? https://www.ttuhsc.edu/elpaso/ I was originally diagnosed by a pelvic floor physical therapist associated with a university hospital. At least in my city the providers associated with the university tend to be more on the cutting edge.

Some people have found Amy Stein's book Healing Pelvic Pain helpful. Maybe you could find some self-help ideas in that book. If it is the pudendal nerve irritated after childbirth maybe it will calm down soon if you are careful. In addition to ice you could try some topical ointment called extra-strength vagisil or the walmart brand called vagicaine.

Is it your inner thighs that are a problem? My PNE started out with a lot of itching and I had a lot or problems with the inner thighs burning due to the obturator internus being in spasm. If you could be evaluated by a pelvic floor physical therapist who does internal (vaginal) myofascial release they might be able to evaluate your pelvic floor muscles including the obturator internus and levator ani muscles to see if they are in spasm. You could also try something like neurontin (at least 1800 mg a day) -- looks like it's on Walmart's list of cheap drugs. You would have to tritrate up slowly and if you are breast feeding I'm not sure how it would affect that but it's something to ask your physician about. It may help stop some of the burning/sensitivity. If your pelvic floor muscles are in spasm you could try vaginal valium. Some people use the pills vaginally to calm down the pelvic floor muscles. Check with the pharmacist but I think you can crush them and mix them with some ky jelly and insert them vaginally -- you would probably need some sort of a plunger that inserts medications vaginally. Valium is also on walmart's cheap list of drugs.

Just brainstorming here on some ideas you might try.

Violet

[lindsayg]

Hi Olivia,
I am sure you and I discussed El Paso but I can't find my response here. I think it might have been in a pm but I have no idea how to even get into there.
I will repeat what I thought I told you about El Paso. My gynecologist locally was Chris Powers who might have heard died in a tragic bicycle accident Memorial Day weekend. So I am looking for a new local gyno. I see Dr. Hibner in Phoenix for pudendal nerve blocks, and 11 weeks ago he gave me Botox shots intravaginally. They have really helped.
I have gone to a wonderful physical therapist in El Paso at providence out patient p.t. Her name is Michelle Fowler. I know she could evaluate you but I think you will need an order from a Dr. before she can see you. I have gone to her for 9 months of p.t. It has not helped me and so I am taking a break right now.
I do remember her telling me she sees other patients for pudendal nerve problems and those patients have been referred to her by Dr. Armita Morena. I'm not sure I have the first name correct. So she would be a good starting point.
Let me know if any of this helps.
Lindsay