Health Organization for Pudendal Education

Dear all members

excuse me for listing my symptoms, however i am hoping to have your thoughts on whether they fit with PN.

I am a 43 year old female, about a year ago i developed pain on sitting, however the real pain was on releasing the pressure on standing.
About 6 weeks ago i developed a debilitating back pain (sacral area) only down my right side this caused pain in my buttock. I feel that i cannot put my right heel to the floor without shouting out in pain.
3 weeks ago i developed this odd sensation in my rectum and vulva. I can only describe it as feeling open and raw. I cannot wear loose clothing or have anything moving around my buttock.
About a year ago i also started to have problems with urinary hesitation. I would desperately need the toilet, sit down to go and then find i could not start voiding. This has persisted.
Just recently i now feel like that my vagina and rectum has something in it. My stools have become very thin. I constantly have a tingling (not pleasant tingling) burning feeling in my vagina. Sex is not painful but achieving orgasm has become virtually impossible. My clitoris feels sore all the time like it has been irritated.
I have to wear dresses or tight leggings so they do not move.
i have calf pain and tingling in my toes. If i turn my right foot inwards i get an excruciating localized pain.
I have had an MRI that shows no disc herniation or narrowing that cold impinge on nerves. Peripheral nerve tests are normal (i take thalidomide for Bechets so the test are normal considering that). The MRI however did show that i have a retroverted, retroflexed uterus.
I live in the UK and so far have managed to raise the eyebrows of my consultant.
I take gapapentin 200mg 3 times a day, tramadol 100mg 3 times a day and diclofenac was PR but now too painful to use. I have to say nothing really takes away the pain.
I also have 2 back mice that are so painful if pressed.
i would be so grateful for any feedback

thank you so much

Welcome to the forum. So sorry you are having so much going on. I see you are taking gabapentin which usually requires a much higher dose to be effective however I would have thought the tramadol would be helping. If you are not getting pain relief then changing medicine might help possibly increasing the gabapentin but may need to lower the tramadol or swapping out the gapapentin for lyrica. A doctor would need to decide and help with this either your gp or a pain specialist. I have seen UK members saying that getting referred to pain management can help not just meds but otherwise. Also getting with a PN aware physiotherapist who can see if have tight pelvic floor muscles or your pelvis is out of alignment and sacroilliac joint disfunction SIJD is occuring (sacral buttock pain makes me think that could be an issue). The FAQs off the homepage has info onn meds you can take to your doctor and it also has a letter to doctors to help them understand what PN is. There is also a symptom list to see which you may have. Lastly might be going to see a PN doctor (waitlist could be months) to see what they think. I think others especially from UK can help guide you. There are lists of doctors and physios off the homepage but UK listing is short and more local physios are in posts from people in the UK section. Does the MRI mention a tarvlov cyst? Those, hernias and labral hip tears have common symptoms to PN and can be easier to fix. Good luck.
Janet

Thank you Janet for taking the time to respond to me, i am going to have another MRI next week of my pelvis. i will look up all our suggestions.

Please let us know how it goes and any questions you have along the way.

Thank you its lovely to not feel alone on this journey into the unknown.

mewsage wrote: I also have 2 back mice that are so painful if pressed.

According to Dr. Antolak a back mouse can be the cause of bladder pain but I don't know much about it. Seems like it would depend on where the back mouse was located. Another name is episacroiliac lipoma.

http://www.centerforurologicandpelvicpain.com/

These articles indicate that they can cause urinary sciatic pain.

http://www.ncbi.nlm.nih.gov/pubmed/2151647
http://www.ncbi.nlm.nih.gov/pubmed/3625290

Not sure how large or where your back mice are located but it might be worth pursuing whether they might possibly be causing your sciatic and pudendal-type symptoms.

Best,

Violet

Thank you so much I will check out these sites xx

I am sorry to hear about your pain. I was diagnosed with PN in Oct. 2012. Since then, I've been diagnosed with 6 other hip problems. I have to think that one or more of these caused my PN. So many end up having other pelvic issues and unfortunately, it can take time and seeing doctor after doctor to get someone to find out what is wrong. I would have bet anything I was entrapped but after all these months, my symptoms are nothing what they were making me think it's neuralgia. It's hard to stay positive and deal with all the life changes PN brings but I hope everything gets better for you.
Rea

Hi
Sotty to learn you are suffering so much and have so little answers. I had bilateral pudendal nerve entrapments nov 2013 and had surgery in Bristol jan2014 so still early days and in recovery. My pain started immediately after a hysterectomy last year and after seeing many specialists, prescribed numerous medication I finally after extensive internet research managed to find a specialists hat understood the condition. I really hope you find some answers and happy to give any help/info
Good luck

Thank you positive poppy, who did your surgery and how long did it take from referral to treatment? So sorry for all the questions. I have just has the good news that I do not have ovarian cancer as my latest symptoms are abdominal swelling and nausea.

Thanks you Marie