Undiagnosed but wondering if I have PN/PNE

[SusieJV]

I stumbled across this site by typing in a list of symptoms to google. I currently do not have a diagnosis, but having read the symptoms, I'm thinking it is quite likely! So far have had blood tests, internal exam and an ultrasound (inc internal). All have come back clear, and am waiting to see doc to see where I go from here.

My symptoms came on mildy about 2 months ago and are slowly getting worse. Initially the pain was mainly in my pelvis, like the bone hurts and generally a 'heavy' feeling in the area. I also felt like I was at the start/tail end of cystitis (having suffered before I know the feeling). Soon after I developed a numbness/tingling in my nether regions! I have the 'arousal' feeling all the time, & if I press around the area near my clitoris the sensation is heightened. I also get shooting pains in what I believe to be the area of my ovaries. Recently I started to get pain in the very top of my left leg & again if pressed the feeling intensifies. If I lift anything just slightly heavy (such as a casserole dish), I can feel it pulling in the pelvic area. I can't bear the feeling of my pants on this leg in the groin area. I am often now getting up twice rather than once in the night and am getting quite worried about what may be causing all these symptoms.

I am not aware of any thing that may have brought these symptoms on, though I do sneeze violently! I did also fall down about 5 stairs, but this was after the symptoms had started, so not the cause but may have exacerbated. I would be very interested to know whether it sounds as though I have this condition, so I can mention it to my doctor at next visit. At the moment I would describe my symptoms as strong discomfort rather than the debilitating pain some have described. Have others had it start off gradually then worsen significantly?

Thanks for reading x

[Andy_Pablo]

Some symptoms sound familiar. Mine got worse over time, although I did just try & power through, & I am 99% certain that I aggravated things. Your best bet would be to chat to your doctor & see if he can send you to a specialist in the injury. Might mean a bit of travelling, but its worth it, even if it is just to get the diagnosis to confirm that you are not going insane. I was diagnosed with several other things before I demanded another opinion & saw my specialist. He then performed a Pudendal Nerve Block & this confirmed in his mind that I had a trapped nerve. Surgery confirmed this. Try not to panic & as difficult as it may be, try not to overdo things. Hopefully you can resolve yours quickly. Good luck.

[Violet M]

So far have had blood tests, internal exam and an ultrasound (inc internal). All have come back clear, and am waiting to see doc to see where I go from here.

At the moment I would describe my symptoms as strong discomfort rather than the debilitating pain some have described. Have others had it start off gradually then worsen significantly?

Thanks for reading x

Hi Susie,

Welcome to the forum.

When you say your internal exam came back clear does that mean you had no pain or discomfort during the exam?

My PNE started out as mild discomfort and the symptoms developed gradually. I think it would make sense to mention PN to your doctor but it is possible they may never heard of this condition before and you may need to ask for a referral to a specialist who has -- or to a physical therapist who is trained in treating pelvic floor dysfunction, ideally someone who is trained in treating patients with pudendal neuralgia.

Best,

Violet

[SusieJV]

Many thanks for your replies Andy & Violet. My internal was a general one, but I did tell GP it hurt more when pressed in certain areas. I am seeing GP again next week, so will print out info from this site to show her!

[Violet M]

Good luck, Susie. Let us know how it goes for you.

Violet