Unsure if PNE/PN or Vulvadynia/ Vaginismus, need help to determine and to get help

[lala93]

Hi,

I am a 20 years old female whom has been suffering with shooting/ electric shock pain in my clitrois since i was 14 years old. The pain initially lasted around 1 month and was worsened when i would move awkwardly such as bending down to pick something up. All though this pain was sever it lasted only a month and did not come back until i was 18/19 years old. The pain of shooting/ stabbing pain can last a few days and then i will not get it for a good 3-4 months and then it may come back and can last a few days or just a day.I am lucky the pain was so inconsistent but i am worried about why it is back. I have visited 2 gynaecologists over the years, the first recommend i put cold soar cream on my vagina when i wasn't even sexually active therefore did not have herpes? all std checks have come clear as well as thrush and other possible infections. Recently ( within last 5 months) i noticed my vagina hole started to become tight and uncomfortable when i had sex, the second gynaecologist i went to told me i had vulvadynia (clitordynia) and that it was infrequent so i should really worry about it and that i also had vaginismus (pelvic floor muscle tightening). I agreed that i had this yet wanted pain relief for my clitordynia ( gyno recommend lidocaine cream which helps) but i noticed the pain was differing from a shooting pain to more a feeling or irritation/ itchy feeling swell as slight pain when urinating as well as burning/hot sensation around my vagina at night, it is then when i stumbled across Pundendal Nerve/ Pundendal nerve entreatment and the symptoms were the only things that explained my pain. I am a little confused however with the pelvic floor issue with PN, could there be a connection between my tightening pelvic floor muscle and PN/PNE? this condition although is not that painful can really bring me down. Does anyone have an opinion on what i have or has experienced similar symptoms or perhaps recommend anyone to go see? I live in Brisbane Australia Thank you for reading! xxxxxx

[trishj46]

It sounds like you definitely have PN or PNE, and it does involve the pelvic floor very much! I have PN in different areas, an entrapped nerve in my rectal, vaginal area. I am in the USA and nobody hear as far as Doctors know very little to nothing about having to treat it. I have been in distress for three years. No meds really help it. You should go to the google site and you will find a web site and forum that can tell you all about PN and treatment and doctors. Where you live in Australia, they know more about it. You just have to find the right Doctors that treat PN.

There is help out there! I just survive by sitting on donut cushion and ice pack. I hope this helps a little.

Good Luck! Hugs!

trishj46

[juliansmom in reply to trishj46]

If your near new York or want to travel the smith institute for urology has a pelvic pain specialist named Dr. Moldwin. He saved my life. And he takes most insurances. I was almost dead from the pain but he didn't give up after I'd already spent thousands on specialists. Google him. I'm on nortriptyline, flexaril, diazapam suppository, magnesium, flaxseed oil. Research these meds in conjunction with your condition.

[juliapiper]

Hello. I have had PN for over two years and also agree that big link with pelvic floor muscles tightening. Tried many treatments. Best results were physical therapy with soneone who kbows about PN to losen muscles and fascia in tgat area and I now use a Tens Machine which really helps. Four pads on lower back as recommended by PN experts in France. Good luck in getting better. Julia

[juliansmom]

I am a 34 year old woman diagnosed with generalized and provoked vulvodynia and pelvic floor dysfunction. I suggest you find a pelvic pain specialist or urogynocologist. Read the vulvodynia survival guide. Consider a med that blocks nerve pain and for the pelvic floor you can use baclofen, ketamine, diazapam suppository, myofasial release from a physical therapist, trigger point injections, muscle relaxers like cyclobenzaprine, drink tons of water to keep your body clean. Pn is hard to diagnose but I've heard some women having nerve decompression surgery. Please discuss the above with a doctor they are prescription meds. Start taking magnesium vitamin its a natural muscle and nerve relaxer buy at a pharmacy. Good luck.

[lala93]

Hi everyone

Thank you for the replies, i truly appreciate it.

Yesterday i went to see a physio whom has a special interest in PN and i was diagnosed with PN as a result of an injury that i concurred when i was 14 years old that affected my Sacro-Illicac by moving it out of place and as a result generating a scar that when i would do a strange movement would trigger it and send the nerve pain which is a shooting/electric like feeling to my clitoris. He also explained its connection to the pelvic muscle and believes that is what is causing the tightening. I have been given strengthening excerices to strengthen the area and combined with regular check ups where he will push the sacro-illiac into place he is confident that i will have complete recovery. I also explained how i was diagnosed with vulvadynia ( clitodynia) and vaginimus and he said that (particularly vulvadynia) is commonly misdiagnosed by gynos as they don't understand about PN and since the symptoms are similar they assume it is something it is not. I recommend anyone who is in the same situation where they think they have something else then what their gyno said to look into a physio instead of a gyno. I am extremely happy with this outcome as i have been thinking i had issues with my vagina for years and to learn it is related to an issue with my back is very good news to me. I am very lucky i have found someone who understands the debilitating pain, i can only hope his diagnosis is correct as it will change my life, however i am very certain he is correct as he seemed very optimistic for a recovery. I was not given any medication for pain relief by him as the pain is tolerable however my gyno recommended lidocaine cream which eliminates the pain so while I'm in the process of recovery i will apply the cream when needed, you can buy it over the counter gets 5%.

Hope this provides help/ hope for suffers out there.

xoxoxox

[Edenborough in reply to lala93]

Hi, can I please ask who you saw and where? I have had decompression surgery which was at least partly successful but then 1 year later I suddenly got a severe pain in my vagina/labia area and it has never gone away. That was nearly a year ago and I have been wondering about physio but the only expert I know of is Dr Ruth Jones in Southampton and as I live in the north and still cannot sit getting there is a real problem for me.

Good luck with the treatment, Marion