Help! Does this spund like PN???

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Help! Does this spund like PN???

Postby Ouch » Wed Jan 25, 2017 5:54 pm

I think I am going a little crazy. I have been going through a rough divorce and have started Mtn. Biking to relieve stress. I go about 2x a week and ride about 20 miles.
I rode on a Friday. That Sunday I woke up with a burning pain to my labia. Over the next couple of days that pain spread to my entire groin area, the inside if my butt cheeks and my sit bones. Pain seemed less at night but as soon as I got up it started up again.
Went to my GYN. She couldn't find anything wrong.
It has now been three weeks and the burning pain is constant.
It tends to move around as well. Sometimes it is just in the right side of my vagina, sometimes it is just around my rectum. Right now it is burning like mad at the base of my tail bone.
My GYN has prescribed a topical cream, gabapentin, and TCA. It has only been 2 days.

I am getting extremely depressed over this.

Any thoughts??
Ouch
 
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Re: Help! Does this spund like PN???

Postby Violet M » Thu Jan 26, 2017 4:30 am

Hi Ouch,

Hopefully what you are experiencing is just a temporary thing and that you will heal quickly and be fine. I don't know whether pudendal neuralgia is your diagnosis but it seems like you could at least have it ruled in or out.

Did your gyn order any imaging such as an MRI to rule out anything impinging on nerves or nerve roots in the sacrum and pelvis? Do you know if the gyn was informed regarding pelvic floor tension and how it can affect the nerves and whether the gyn checked the tightness of your pelvic floor? Did they press along the course of the pudendal nerve to see if it was irritated? If none of these things happened, it seems like maybe you want to get a second opinion from a provider who is knowledgeable about pudendal neuralgia. You could at least ask for a referral to a physical therapist who specializes in chronic pelvic pain. Hopefully you can find one in your area. You can check out our website that lists some of them. http://www.pudendalhope.info/node/61 The reality is that not all providers are knowledgeable about pudendal neuralgia. My gyn did not have a clue.

In the meantime when you need temporary pain relief you could try ice gel packs in addition to your medications. Or you could try alternating heat/cold. I also found over-the-counter 20% benzocaine helpful. (Extra strength Vagisil).

Take care,

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: Help! Does this spund like PN???

Postby truman » Thu Jan 26, 2017 9:40 am

Can only reply as a male with my experience of PN. After 3 years of colonoscopies, sigmoidoscopies. proctograms - all came back negative, in desperation I searched on line & found similar symptoms but usually experienced by females. Went to head of GP practice, he did quick internal-put finger on place of pain immediately and prescribed a very low dose of amitriptylene (20mg/night). Started to work immediately-within a week virtually all discomfort & pain was gone. I may need to stay on this dose until/if it repairs itself but that's no problem !
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Re: Help! Does this spund like PN???

Postby Ouch » Thu Jan 26, 2017 1:31 pm

Thank you for your input.
It has been three weeks and I have been trying to take it easy but the pain is not getting better. This is making me even more stressed. I am a single mom and I work full time. This is making me depressed and anxious.
The strangest part is that the pain moves around every day.
I am going to make an appointment today with a physical therapist that was on the list for Pudendal hope.
Ouch
 
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Re: Help! Does this spund like PN???

Postby Andy_Pablo » Thu Jan 26, 2017 11:41 pm

You have a similar story to my own. Its tough dealing with a break up with this infliction... I wish you all the luck in the world...
Credula vitam spes fovet et melius cras fore semper dicit...
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Re: Help! Does this spund like PN???

Postby Violet M » Fri Jan 27, 2017 5:20 am

Pain moving around is something I have heard frequently on the PN forums over the years. I'm not sure I have a good explanation for it. Some people have said their pain is related to anxiety and stress. For you it sounds like there may have been an injury associated with the rough biking but if you are experiencing stress and anxiety, those can cause your pelvic floor muscles to tense up even more and irritate the nerve worse. That said, it is impossible not to feel stress and anxiety when you are experiencing the kind of pain you are describing. If you think stress and anxiety are triggering your pain you may want to check out Ezer's most recent posts on this forum on the topic of the mindbody approach. Over time your brain develops permanent pain signal pathways that fire even after your injury heals and I believe the mindbody approach works by helping to suppress or redirect those pain signals. I could be wrong but that's how I understand it.

The important thing is to have a plan of action so you feel like you have some control over the situation and you have something to hope for. You may want to ask for some medication to help control the burning -- like amitriptyline (or a related tricyclic antidepressant) as Truman suggested, or lyrica, or gabapentin. If you try gabapentin it typically takes titrating up to at least 1800 mg a day for it to be effective for pain. Lyrica and gabapentin are not addictive but Lyrica may have some side effects such as weight gain. It's important to keep your pain levels low if you can so you don't develop a permanent cycle of pain signals in the brain and spinal cord that is hard to break.

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: Help! Does this spund like PN???

Postby Ouch » Sat Jan 28, 2017 8:41 pm

Violet,
Thanks for your reply. I started taking amitriptyline 5 days ago as well as topical gabapentin. On Thursday I woke up and I had no pain. It lasted all day and I was thrilled!!!!! I thought that it was over but Friday mid-morning a familiar burning started up again :(

This is very frustrating!!!! I guess I will have to set up an appointment after all with PT because I currently feel like I have sand paper up in a very delicate place.
Ouch
 
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Re: Help! Does this spund like PN???

Postby Violet M » Sun Jan 29, 2017 4:12 am

Aww, sorry Ouch. Well, often it takes more than one thing to get this under control so I think you are smart to go ahead and get the evaluation with the PT.

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: Help! Does this spund like PN???

Postby nonsequitur » Sun Jan 29, 2017 5:29 am

Ouch,
What you are describing is textbook mindbody or somatization syndrome. Chronic pain triggered by a small physical incident during or shortly after a stressful period.

Prof. Franz Alexander wrote in the classic "Psychosomatic Medicine: Its Principles and Applications" that you need 3 elements to trigger somatoform pain syndromes:

1) A predisposition (ex: childhood trauma, lifelong anxiety)
2) An emotional upset (ex: sudden stress, death, divorce)
3) A triggering incident (ex: a fall, a small accident)

You also mentioned that the pain moves around and that you mysteriously were pain free for a little while. Again both of those are textbook somatoform pain disorder phenomena.

Here is an excerpt from Dr.Echenberg's website, a respected pelvic pain specialist:
“Chronic pain is the result of our brain interpreting signals through our nervous system commonly long after the actual tissue damage has healed. Our brain “turns the volume up” on our nervous system. Regretfully, this means that our physical sensations increase and consequently we feel more pain. In other words, when it comes to pain, the more we fear it, the more we feel it."


The pain is not a sensation that arises as output from the body. It is an output of the brain. The problem is that many people will read it as saying that pain is "all in your head”; or that pain is unrelated to conditions in the body.
The pain is of course related to conditions in the body but modulated by the brain. Ongoing stress accompanied with great fear of pain, leads to the pain becoming chronic. At that point the pain is simply due to muscle tension in the pelvis amplified by the brain. It is a loop, More pain, more tension.

Changing the notion of the cause of pain from a physical problem to a mental process can begin this reversal, not pelvic floor physical therapy or other medical modalities.

I think you should have a thorough medical check-up first to see if there is anything obvious that explains your pain. If not and your problem is a somatoform pain disorder, there are good resources like the following:

http://www.tmswiki.org

In particular look at http://www.tmswiki.org/ppd/TMS_Recovery_Program
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
S.Freud
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