I'm new and looking for support :)

[ashicks1020]

Hi all,
So just a brief history.... About 3 weeks ago, I had what I thought was a UTI. I did a course of antibiotics for this .... had a burning sensation, went back to doc... had yeast infection. Started meds for that.... vaginal burning intensified and went to see my GYN. last Thursday. She saw a little yeast and gave me Diflucan.... symptoms still persist. I have mainly had inner vaginal burning.... which over the last week has become more outward burning sensation on the vaginal area... with sensations of 'cold/hot' (almost feels like icy/hot)... Yesterday a new sensation happened- burning/numbness in my butt cheek.... I work a job that I sit at a desk normally, so this aggrivates symptoms... I feel relief when I stand up or sit on a toilet. After googling, I think I have PDE.... my symptoms seem to be spot-on. I actually go on a cruise with my husband this weekend for a week... I feel a little nervous about this, but hoping that we will still have a good time. I don't have any discomfort/pain to the touch... it's more of a sensation. I was in a car accident about 10 years ago and have had on/off pain with my lower back since then. I guess I am at a loss as to who I need to see first to get a diagnosis. It seems as many people take forever to figure out what is wrong with them.... If this is what I have, I want to get the ball rolling. I am trying to remain optimistic and trust God in all of this. Any insight/advice you could give would be wonderful. THANK YOU! ~ Ashley

[ashicks1020]

Also... I live in South/Central Virginia.... don't know if this information is helpful or if there is anywhere in Virginia that could direct me.

[Violet M]

Welcome Ashley,

Some of your symptoms sound similar to what I experienced in my early pudendal neuralgia days but I don't know if that's what's going on with you. I was initially diagnosed by a physical therapist when my physicians didn't know what was the matter. There are some physical therapists listed on our website at this link http://www.pudendalhope.info/node/63 who have been specially trained to treat people with pudendal neuralgia so you might want to see one of them for an evaluation. They might be able to direct you to a physician in your area who could help you.

Best,

Violet

[helenlegs 11]

Hi Ashley,
Welcome
Yes Physiotherapy is probably a good place to start for treatment as Violet has advised. The hot/cold thing does sound like it could be nerve related and of course the pudendal nerve does serve the vaginal area. This nerve could also be responsible for burning in the 'butt cheek' but possibly not numbness there (depending on where exactly you mean) The clunial nerves serve innervation of the skin over the buttocks ie. superior cluneal upper, middle cluneal the rest apart from inferior cluneal right next to anus. Although saying that the innervation 'map of the body' isn't exactly the same for all. I do know about middle cluneal as I have NO sensation at all in the skin of my bum from about 1/3rd of the way down due to middle cluneal nerve problems. (Mine is from entrapment at piriformis level)
I would also get the PT to check out your piriformis muscle. That may be tight due to sitting, try not to sit whenever possible btw.
The physio (PT) needs to be someone who is PN aware (from list hopefully) although I would imagine that if there is no one near you then someone from that list may be able to advise you.
You could also try a few VERY EASY piriformis stretches. Don't go crazy with these, as some people do say that it makes their PN (pudendal neuralgia worse) If you do feel tightness in your mid bum when trying the stretch it could point to the p muscle being problematic. As mentioned a good pelvic physio will be able to help with all of this too.
Let us know how things go.
Have a wonderful time on your cruise.
Take care,
Helen

[greeneyes]

Ashley,

Your symptoms are somewhat similar to mine. When I was in my twenties and thirties I had bouts of what I thought were yeast infections. Sometimes there actually was an active infection and sometimes the doctor could not find anything wrong. Several times an actual yeast infection cleared up but the burning sensation persisted for months. In my early forties I developed chronic low back pain. About ten years after the back pain started I developed PN (or vulvodynia, I'm not sure what it is ). I have vaginal burning that extends into my right butt cheek. I am working with a pelvic floor physical therapist and using an ointment containing lidocaine and estrogen at night. I will soon start taking nortriptyline. My doctor is talking about trying Botox if the current regimen doesn't work. These are all things you could try yourself. Good luck!

Greeneyes

[muddster7]

Hello, I too am new here and not sure where to start. I've had 1 injection into the inferior cluneal nerves, relief was short lived (4 hours). I live in South Eastern Virginia and have located a pelvic floor specialist that is familiar with pudendal issues. My question is, do people actually benefit from therapy or should I go for more injections? I spend my day standing/laying down... anything to avoid sitting. I also have hyperarousal - which seems to odd to me, since there is 24/7 burning in my groin/ischial tuberosities. Does this happen b/c of inflammation to the region or is like a diabetic wanting cake, but can't have sugar? <-- does that even make sense? Thanks for any insight and sorry for those who suffer with this affliction. *hugs*

[Violet M]

Hello Muddster,

Some people benefit from physical therapy so it is definitely worth a try. I see nerve blocks as primarily diagnostic because they can have risks associated with them. I've know people who got worse long-term from them and haven't heard of many people who got better permanently but if your doc has good evidence that they can help you permanently it might be worth it.

Violet

[helenlegs 11]

Welcome muddster,

I would always go for the least invasive therapy options first and continue on with the PT and give it a good few sessions. Has the therapist found anything in your pelvic floor muscles to say they could be the cause? If so then great, carry on, as hopefully any trigger points and tight muscles can be released and relaxed therefore releasing any hold/irritation of the nerve involved. Job done .
This therapy can be all that is needed as many people can tend to tense their pelvic floor muscles for various reasons, one, stress (for me, it is always between my shoulder blades for instance)
If the therapist has found particularly tense or tender areas to work on and that work is therapeutic, stick with it. If not, like everything there comes a time when you realise it's time to quit and move on to the next treatment.
What about medication? There are examples of what helps neuropathic pain on the home page. Some people dislike taking drugs and with good cause often, but in this case appropriate prescription can help. Obviously to help alleviate any current pain but also to halt any progression, as a central sensitisation can sometimes (not always by any means) become a problem with any nerve/pain issues.
Inflammation can sometimes be the issue, although that is usually due to some infection which is usually easy to detect and treat successfully. People with pelvic inflammation wouldn't usually get to a chronic stage of pain. (unless a nerve problem is behind say bladder function and uti's persist) Take a look at the home page which explains many of the issues about PN and as mention gives many helpful tips and advice.
It's interesting that your inferior cluneal nerve was targeted, was it a guided block?
Was there any 'defining moment' when your pelvic problems started? Sorry! questions, questions but that is often an important factor and a good guide as to what will help
Take care,
Helen