Good morning. I am new to this site, and have just discovered PN exists because I have done some research, as GP and other clinicians are scratching their heads, and think this is maybe what I have, can anyone advise me please?
I am 55 years old, was very well and fit, and suddenly last year had a period after 18 months, with a lot of low pubic pain. The bleeding was investigated, thought to be atrophy, due to my age, and I have had no more, but a month later I had more pain and horrible bowel irritation with bloating. Over a period of a month I then had a feeling of weakness, like I had flu, in the top of thighs and into my groin, and a strange twitching and "popping" all up and down my legs. I also get a shuddering sensation in my abdomen and buttocks, and the buttocks sometimes ache like I have sciatica. If I relax into my back, it is really sore. I also have anxiety radiating fron the anal area, as though I need to go to toilet, but I don't! Some have suggested IBS, which is common in post menopause, but I don't have diarrhoea or constipation, but the pelvic pain is worse after opening my bowels. Generally I feel horrible and "wobbly" and anxious, and don't know who to turn to now. My GP has started me on very low dose HRT, but I have not noticed any changes yet. I had a colonoscopy, all was fine but the consultant did suggest I may have pelvic floor disfunction. Does any of this mean anything to anyone? Please help.
DRAGONSONG. XX
Not sure if it is actually PN - HELP!
Re: Not sure if it is actually PN - HELP!
Welcome Dragonsong,
Sorry you have to do the research but glad you are here so we can try to help. Since pelvic floor dysfunction was mentioned and one of first ideas is to see a PT, that would help. I suggest you check out the PT list off the home page because they are PN aware and so more attuned in what to look for and will only suggest stretches that help not hurt someone that may have PN. Also thhere are symptoms listed to see how you match up. The FAQs have lifestyle suggestions and steps for getting diagnosed and treated. Also a letter for medical proffessionals, info on medicines that help your doctor to help you.
Janet
Sorry you have to do the research but glad you are here so we can try to help. Since pelvic floor dysfunction was mentioned and one of first ideas is to see a PT, that would help. I suggest you check out the PT list off the home page because they are PN aware and so more attuned in what to look for and will only suggest stretches that help not hurt someone that may have PN. Also thhere are symptoms listed to see how you match up. The FAQs have lifestyle suggestions and steps for getting diagnosed and treated. Also a letter for medical proffessionals, info on medicines that help your doctor to help you.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Not sure if it is actually PN - HELP!
Hi Dragonsong, welcome from me too.
There are quite a few things in your post that are not totally synonymous with pudendal symptoms although the area of pain you mention is of course. There could be a couple of things going on but I'm glad that you at least know about PN and understand the problem in order to pursue treatment, or eliminate it.
I also get the 'crazy' twitching, which I know Karyn has also mentioned. There is no actual movement that can be seen but it does feel as if there is something fluttering or moving under the skin. I think we have decided that it is possibly (usually slight) involuntary muscle movement due to misfiring nerve signals. I just wish I was wired up to something when it happens, as it does sound far too bonkers to be real.
Many people do get urinary urgency with PN but because there is a rectal pudendal branch, symptoms can be bowel related. You mention additional pain after bowel movement which many here will identify with.
That is the difficulty however, everyone is different. Yes, there are similarities (you do need pain in the correct vicinity
) but then people often describe things differently and there are many symptoms, but every symptom box doesn't need to be ticked, so it isn't easy getting to the crux of the problem. For instance I have increased pain with a full bowel and often worse during a bowel movement but then slightly better afterwards.
Having looked at Clare's recent post that you contributed to, maybe your anxiety is related to the onset of pelvic pain symptoms (as described by molly) rather than an actual symptom in itself? Take a look at the home pages here (if you haven't already)
There is a lot to digest,so please don't worry too much, it can be a bit overwhelming, especially initially . I hope that you get the answers needed. We are all here to help.
Take care,
Helen
There are quite a few things in your post that are not totally synonymous with pudendal symptoms although the area of pain you mention is of course. There could be a couple of things going on but I'm glad that you at least know about PN and understand the problem in order to pursue treatment, or eliminate it.
I also get the 'crazy' twitching, which I know Karyn has also mentioned. There is no actual movement that can be seen but it does feel as if there is something fluttering or moving under the skin. I think we have decided that it is possibly (usually slight) involuntary muscle movement due to misfiring nerve signals. I just wish I was wired up to something when it happens, as it does sound far too bonkers to be real.
Many people do get urinary urgency with PN but because there is a rectal pudendal branch, symptoms can be bowel related. You mention additional pain after bowel movement which many here will identify with.
That is the difficulty however, everyone is different. Yes, there are similarities (you do need pain in the correct vicinity
) but then people often describe things differently and there are many symptoms, but every symptom box doesn't need to be ticked, so it isn't easy getting to the crux of the problem. For instance I have increased pain with a full bowel and often worse during a bowel movement but then slightly better afterwards.Having looked at Clare's recent post that you contributed to, maybe your anxiety is related to the onset of pelvic pain symptoms (as described by molly) rather than an actual symptom in itself? Take a look at the home pages here (if you haven't already)
There is a lot to digest,so please don't worry too much, it can be a bit overwhelming, especially initially . I hope that you get the answers needed. We are all here to help.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Not sure if it is actually PN - HELP!
Hi Dragonsong
I am in the UK and saw Dr Greenslade (from the list of Drs on here) privately this year - he is at the Nuffield in Clifton, Bristol or at Frenchay Hospital NHS .
He charges £250 for an initial consultation. He is a lovely man and may be able to help you.
I typed a letter and took it to my GP asking her to refer me and add my medical details which Dr Greenslade required.
As i was willing to pay i don't think that she was able to refuse me a referral.
Prior to that i was having a trouble convincing my GP that i have a nerve problem but she was ok with me being proactive.
I have now been referred back to my local pain clinic on NHS but i think if i had not skirted around my GP i would not be where i am now.
I am in the UK and saw Dr Greenslade (from the list of Drs on here) privately this year - he is at the Nuffield in Clifton, Bristol or at Frenchay Hospital NHS .
He charges £250 for an initial consultation. He is a lovely man and may be able to help you.
I typed a letter and took it to my GP asking her to refer me and add my medical details which Dr Greenslade required.
As i was willing to pay i don't think that she was able to refuse me a referral.
Prior to that i was having a trouble convincing my GP that i have a nerve problem but she was ok with me being proactive.
I have now been referred back to my local pain clinic on NHS but i think if i had not skirted around my GP i would not be where i am now.