Could this be PN or PNE?

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Could this be PN or PNE?

Postby Melly » Mon Mar 06, 2017 12:07 am

Hi. I've been having weird symptoms for about 3 months now. I went to my general Dr.and she did a blood work up which came back ok and a pelvic X-ray which was also normal. I saw my gyne and she did an internal exam and did not see anything unusual. She referred me to a ortho Dr. These are my symptoms...
Burning after urinating (a few mins) not a UTI
Vagina and rectal pressure (almost like bloating feeling when you have your period)
Throbbing under labia and on sides rectum. Feeling like it's swollen.
Pain when sitting (this is the first symptom I noticed driving my car)
I wake up pain free and it gradually gets worse. I though maybe it was high hamstring tenopathy or isachical burstiys (inflammation of sacs over the sits bones)
Also, my underwear are uncomfortable rubbing in that area. I can push and doesn't hurt but the underwear make it worse.

When I lay on my back it seems to be better but I have to be flat.
I'm miserable. It's been 3 months. Ibuprophen doesn't help. Ice helps a little.
Could this be PNE?

Melly
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Re: Could this be PN or PNE?

Postby Andy_Pablo » Mon Mar 06, 2017 1:20 am

Hi there Melly. Im sorry you are suffering. Although I am a male, unfortunately some of those symptoms sound familiar. Your best option is to speak to a PN/PNE doctor & see if they can investigate further. This url; http://www.pudendalhope.info/node/54 is a list of doctors who are knowledgable about PN/PNE. Hopefully they will be able to point you on a road to recovery. Please dont panic though. There are patients who have recovered & if you catch it early, you are in a positive position. If you have any questions, please dont hesitate to ask. I wish you good luck. Andy.
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Re: Could this be PN or PNE?

Postby Violet M » Mon Mar 06, 2017 5:35 am

Hi Melly,

I think it's too soon to tell for sure but like Andy said, some of the symptoms sound familiar. You may also want to get a referral to be checked by a pelvic pain PT, especially one who knows how to check for and treat pudendal neuralgia. http://www.pudendalhope.info/node/16

Did your doctor say why an ortho? I suppose they could rule out ischial tuberosity bursities or femoral acetabular labral hip tears that may cause some of the same symptoms.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Could this be PN or PNE?

Postby Melly » Mon Mar 06, 2017 2:41 pm

Hi Violet,
Thank you for responding. My Dr. was clueless. She didn't even know who to refer me to. I found a Dr. on the site about 1.5 hours away from me. I am going to make an appointment. I feel so scared and have terrible anxiety. I am not sure if my constipation is from anxiety or PN. I will keep you posted.
Melly
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Re: Could this be PN or PNE?

Postby Andy_Pablo » Mon Mar 06, 2017 10:18 pm

I am certainly no doctor, but I think constipation with this condition is a mixture of pelvic floor tightness, anxiety & medications. I know that if I dont take a laxative every day, then my constipation is bad. But, I am certainly no doctor, so yours may be unrelated.

If I may be so bold & make a suggestion; write down all of your symptoms when they appear & then produce your list to your doctor. One thing I found in my early conversations with doctors is that I kept forgetting to mention some elements of my condition. I am unsure if this was down to medications making me forgetful, anxiety, depression, etc, etc, but if you have it all written down, then nothing can be missed & hopefully you can get to thd bottom of your issues quickly. A diary of when & how your symptoms are & how they affect your day to day might be an idea.

Andy.
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Re: Could this be PN or PNE?

Postby Melly » Mon Mar 06, 2017 11:38 pm

Andy,
That's a great idea! I'll start tomorrow and that will give me a full week. You've been great. Are you on meds or did you get surgery?
Melly
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Re: Could this be PN or PNE?

Postby Andy_Pablo » Tue Mar 07, 2017 12:16 am

I take Pregabalin, Tapendadol & Ibuprofen. I am experimenting with CBD oil too, albeit I have not noticed any change yet. I had surgery in July 2015. There have been some improvements, but alas, not enough to grant me my life back yet. I stil live in hope... Surgery is a huge step though. It is pretty much a last resort as it has the very real possibility of making things worse. A good doctor should be able to run through the least invasive treatments on offer before considering surgery. Andy.
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Re: Could this be PN or PNE?

Postby Violet M » Tue Mar 07, 2017 3:10 am

Melly, if you can get in with one of those PT's on the list that might be a good idea as well as seeing the physician. PT's look at this from a different perspective than physicians and might be able to give you some valuable information that you may not get from a doctor. Hope your appointment goes well.

All the best,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Could this be PN or PNE?

Postby Melly » Tue Mar 07, 2017 5:14 pm

Violet,
My appointment is Monday the 13th at 1pm. There are no PT's in Illinois on the list unfortunately.

Melissa
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Re: Could this be PN or PNE?

Postby Violet M » Wed Mar 08, 2017 4:59 am

Melly, there are some PT's on the list from IL -- maybe you didn't see the list or maybe you saw it and they are just too far from you. Here is a link to the list. http://www.pudendalhope.info/node/63#IL
My guess is that Dr. Atashroo probably works with a PT who can evaluate you, but that might be something you want to ask about. It wouldn't be very convenient to drive an hour and a half for regular PT though, especially if driving flares up your pain.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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