Please Help Me, Unsure of What THIS is!

[LindseyD]

Hi, Im Lindsey and this is my first post here.

A bit of my story...

Im un officially diagnosed with Interstitial Cystitis (doctors believe I may have this).

In August of this year I developed 1 UTI and antibiotics cleared the infection, but my bladder symptoms have persisted. Continual feeling of the need to urinate,bladder pressure....

In September I began to have an achy like feeling come and go on the left vaginal lip. (hope thats okay for me to say). Anyway, that feeling often would go away by itself,and just come back off and on. Rececently, my achy feeling i would get on the left vaginal lip, also started to feel it on the right vaginal lip. Sometimes a burn like sensation.
Its gotten worse within the last couple of days. I have a pins and needles like feeling on my left butt cheak,and sometimes the back of my thys.
I never road bicycles or had a job where i sat a lot. Although since my IC symotoms started, i have been out of work.
Ive read this issue can be caused by vaginal infections.
Back early summer, I had about 4 vaginal yeast infections due from antibiotics

Right now Im not sure what I have, or where to go next!? What things should I avoid doing?? What kind of doctor should I see?
I am 25, married to a wonderful man, and scared.

[Violet M]

Hi Lindsay,

Welcome to the forum. I'm glad you found us but sorry you are in this predicament. Right now it might be important to get your symptoms under control while you are searching for a definite diagnosis so that you don't get into a vicious cycle of pain. Are you taking any medications or doing anything to treat the pain right now? The bladder sphincter is innervated by the pudendal nerve so if the nerve is irritated that could contribute to your feelings of needing to urinate frequently. Antidepressant medications including tricyclic antidepressants or SSRI antidepressants can help dampen that feeling. You can check out the website at pudendalhope.org under treatment options/medications for more info on meds. You could also try over-the-counter extra-strength vagisil or other numbing agents in the vulvar area.

When you had your UTI's did they actually culture them or did they diagnose you based on your symptoms? The reason I ask is because pudendal neuralgia can have some of the same symptoms as a UTI or a yeast infection. If your culture was positive then obviously it was a UTI but if you didn't have a positive culture it's a little tougher to say for sure. I thought I had a bad yeast infection early in my PN journey but it wasn't that at all.

In addition to getting your symptoms under control another option right now could be to find a physical therapist in your area who is knowledgeable about pudendal neuralgia and can evaluate your pelvic floor for any tension. If your pelvic floor muscles are tense they could be impinging on pelvic nerves and causing some of your symptoms. There is a list of knowledgeable PT's on the pudendalhope.org website. I'm sure there are others who are not on the list also.

Many of the PN docs recommend having an MRI to rule out obvious possible causes for your symptoms. Make sure they check for tarlov cysts if you have an MRI. The type of MRI recommended varies from doctor to doctor. Some recommend the lumbosacral including the lumbosacral plexus MRI and some recommend pelvic MRI's too.

If your nerves are irritated hopefully over time they will calm down with the conservative treatments I mentioned. If you feel there are any stress-related issues you could check out Ezer's most recent posts on the mind-body connection.

Take care,

Violet

[Bertie]

Hi Lindsey I am from the UK.........I have PN, however that PN has been caused by an untreated UTI, I am under a Professor in the UK who has been studying lower tract UTIs for forty years, since 1992 he has seen 5000 mainly ladies with so called IC all of those ladies had infections a lot of them had two or three it is called a bladder wall infection which is hidden under a bio film. Since I started treatment with him, my vaginal, rectum burning has gone, which in turn calmed down the piriformis/sciatica pain that's almost all gone, my PGAD has reduced by 80%, I am left with a sore vulva at present but I think a lot of that is to do with the urine itself, so I use a bottle of warm water at the same time as I P, to wash myself then pat dry not rub, and then put a barrier cream on. More treatment than my face. Most of the ladies on the closed FB group I am on under the Professor have some kind of vaginal/clitoral/ leg problems that are actually coming from the bladder, but as the PN is a big part of the bladder when that is not happy it lets you no. Unfortunately the only treatment is very long term strong antibs. However I can now sit again, but it will be along road to hopefully being normal. His urine samples take two weeks to be tested its called sediment testing not the usual hospital quick turn around, he also said the reason we are in this state with UTIs not responding properly to antibs is because they have been used incorrectly for so long. He is a microbiologist so really understands the depth of what he is saying, not what he has been taught from a text book. Hope this may give you food for thought.

[LindseyD]

Thank you both for the responses. ill respond to you both in order of the questions.
Violet M,
I startes taking Flexiril which is a muscle relaxer I had on hand last night but it doesnt really help. What is the bladder Spinster and where exactly is the prudendal nerve? So possibly putting numbing agent meds around the vulva might help?
Yes, When I first got tested for uti it was only a trace id leokosites but I went back 3 days later and i was positve. A rather bad infection in fact.
What is a Tarlove Cyst?
I have been unser an abundance of stress for 4 months since the bladder issues started. even the day that just showed a trace of leokosites,my bladder felt so "full" i was shocked only a trace showed up. I had 4 yeast infections in the spring. Plus this one UTI in August. Ive has the numb vaginal aching off and on since september. a couple weeks ago I had a trace of leokosites show in my urine test and we fot rid of it naturally. but since then these other symptoms have startes. tingly and tense or tight muscles in my thigh,butt,even ankle and foot. I cant sit without making it worse like that side of me is going to sleep I believe its connected to the bladder issue. I just dont know if i should go straight to a neuologist or try to go straight to a PN doctor.

[LindseyD]

Bertie,
thank you for your response as well.

When you say un treated UTI... Did other antibiotics u took take away the bacteria that was found,but your symotoms remained the same? How does he test if you have an infection in your bladder wall?

The only part of my vagina that ever aches is the left lip,sometimes the right. I dont have any rectom pain or clitorious pain. I feel like this is sciatic nerve but that nerve is not pinched. i webt to the chiropractor and saw the xrays. What is the Pirifimis?
The only treatment is long term antibiotics? what if you get a resistance to it or antibiotics in general? plus taking a lot of antibiotcs can cause yeast and gut issues. However I am interested in learning more about your doctor. What antibiotic is it?

[stephanies]

Hi Lindsey,

I am sorry you are going through so much. Have you tried any medication to calm your bladder down? A low dose tricyclic antidepressant can help with that as well as the pain. Also, did you have positive cultures for yeast? When my pain first came, it felt like a yeast infection and I found out later that my doctor treated me with yeast infection medication based on my symptoms rather than a positive culture. Because you have some numbing and tingling a visit to a neurologist is probably a good idea.

Sincerely,
Stephanies

[LindseyD]

Hi, well, im on Trazodine which is considered an anti depresant but it doesnt help any of my symotoms. In fact I was on it before ever getting them.
When I had my yeast infections back in the spring and summer i didnt have a cultur but i only got them each time I took Bactrim and Deflucan along with Monistat Cream cleared it. i havent had a yeast infection since September.

My bladder always feels full even when I empty. and me drinking makes me have to go even more quickly. i feel like these nerv isues are due from my bladder problem im just not sure how to go about fixing these issues. I feel like this nerve thing comolicates the bladder issue more.

[Violet M]

Lindsey, here is a link to bladder sphincter images. http://droualb.faculty.mjc.edu/Course%2 ... abeled.jpg

Tarlov cysts are described on Dr. Feigenbaum's website. He is one of the expert in the US.
http://frankfeigenbaum.com/tarlov-cyst/

Violet

[LindseyD]

Lindsey, here is a link to bladder sphincter images. http://droualb.faculty.mjc.edu/Course%2 ... abeled.jpg

Tarlov cysts are described on Dr. Feigenbaum's website. He is one of the expert in the US.
http://frankfeigenbaum.com/tarlov-cyst/

Violet

Wow, the link about tarlov cysts symptoms sound so much like mine. I am scheduled for an mri and emg in Janary.

Is Tarlove Cysts something totally different from PN? Is it one of those things that surgery often makes symptoms worse for folks?

[Violet M]

Lindsey,

Tarlov cysts are up in the spinal area or sacral area. Pudendal neuralgia is in the peripheral nerve area after the nerve leaves the sacrum.

I don't know how successful tarlov cyst surgeries are but I'm sure as with any surgery there is at least a slight risk involved.

Violet