My health journey - looking for advice

[lindseyysmith]

Hello everyone,

My mom recently found this forum as she believes I have PN.

I am a 23 year old female. About 6 months ago, I started having extreme urinary frequency and worsening low back pain. My doctor thought I had a UTI, then a kidney infection, treating me with multiple courses of antibiotics. Throughout this time I had two episodes of retention, one where they had to put in an in and out catheter. She utilized tetracycline and doxycycline as a last resort thinking maybe pid. I got severe esophagitis and wound up in the hospital for a week not being able to eat or drink and in immense pain. Overall, the tests I've had have been a lumbar spine and SI joint MRI, cystoscopy, CT of my abdomen/pelvis, bloodwork, etc. These were all normal except some masses pressing into my bladder seen on the cystoscopy but nothing seen in ultrasound. My pelvic US showed that my bladder was contracted. Since then, my symptoms have been getting worse, including extreme urinary frequency (started as q-15 mins and now q-45min-1hr due to solinefacin, a bladder med), difficult to start stream, weak urine flow, extreme constant discomfort in bladder, pain while sitting, no intercourse drive, extreme discomfort during intercourse so I abstain now, and weird numbing sensations and pain down there. I also have to push really hard to pee multiple times and sometimes stimulate in order to pee. I just want answers and it feels like my doctor hasn't seen this before. I want to feel better.

[April]

Hi Lindsey,

Welcome to forum. I'm so sorry to hear about all that you've been through. It sounds awful. Some of your symptoms definitely sound like pn (pain while sitting and discomfort with intercourse), but some of your other symptoms and signs seem different. I haven't heard about bladder retention like that with this problem. The mass pressing on your bladder sounds important. I wonder why it wasn't visible with the ultrasound. What did the doctors think was going on with that? Where was your extreme pain when you were in the hospital?

April

[lindseyysmith]

Hi April,

Thanks so much for getting back to me. I appreciate it. Thank you for your response. That’s interesting about the retention.

My urologist said it was coming from my uterus and it could be fibroids but my family doctor said that that would be seen on an ultrasound.

My pain in the hospital was in my esophagus right at my chest and into my neck because of the inflammation and infection going on there.

I appreciate any help. Thanks,

Lindsey

[Violet M]

Hi Lindsey,

Your mom may be right that you have pudendal neuralgia, I can't say for sure. Like April said, you have some of the same symptoms typical of PN but it sounds like you have a bunch of other symptoms with other things going on besides PN - for instance the bladder masses which could potentially be endometriosis as your physician suspects but you don't know that for sure.
https://radiologykey.com/bladder-masses/
I guess I would want a second opinion as to whether you need a definitive diagnosis of what the masses are, and whether it would be worth a laparoscopic biopsy which is how endometriosis would be diagnosed with certainty. https://my.clevelandclinic.org/health/d ... ometriosis
I don't know where on your bladder the masses are but if they are pressing on the pudendal nerve, which innervates the bladder sphincter, it could be causing some of your symptoms. If the pudendal nerve is not controlling the bladder sphincter properly, I can see how it might potentially cause bladder retention, but that is just speculation on my part.
Also, if you bladder is contracted causing it to be smaller than normal, that could be one of the causes of frequent urination. If the pudendal nerve is irritated due to compression or stretch, it could be super sensitive causing you to feel the need to urinate frequently.

You mentioned lower back pain. Have you had an evaluation by a physical therapist who specializes in treating pelvic issues yet? Some musculoskeletal problems that are not detected on imaging, can be detected by a PT evaluation. For instance, I have been told I likely have a genetic collagen deficiency leading to lax ligaments resulting in SI joint dysfunction. This hypermobility was not detected by MRI but it was discovered by a PT.

If you can, it would make sense to see a pudendal neuralgia specialist to get their take on what might be going on with you. They might recommend having a diagnostic pudendal nerve block. Some of the docs will do phone consultations.

Saying some prayers for you to get this figured out and to be able to find treatment that will help.

Violet

[lindseyysmith]

Hi Violet,

Thank you so much for your response. I appreciate the help.

I met with my doctor yesterday. Since I’ve had so many normal ultrasounds, they believe it’s my retroverted uterus that is pushing on my bladder and that’s what was seen.

To be honest, I do think endometriosis might be there because all of these symptoms started when I got my IUD out and not taking any contraception.

That does make sense about the bladder and pudendal nerve. I don’t have much pain in my perineum though, it’s all in my very low back like sacral area but my Si joint MRI was normal.

I just got put on gabapentin and I hope this gives me some relief.

Thanks again,

Lindsey

[Violet M]

Si joint MRI was normal.

An MRI isn't necessarily going to show if you have hypermobility though. That is something that would be detected by a physical therapist. That's not to say your SI joint is the problem, but it would make sense to at least get a PT evaluation to rule it out.

If your pain is primarily in the sacral area and you don't have much perineal pain, it seems like there is more going on than just pudendal neuralgia because sacral pain isn't one of the hallmark symptoms of pudendal neuralgia.

Violet

[stephanies]

Lindsay,

You mention that you have had a CT scan of the pelvis. I wonder if an MRI would show something different. Endo can sometimes be seen on an MRI. I have endo that was suspected based on MRI images and confirmed in those locations via laparoscopy. In addition, since the PN originates at the sacrum, a pelvic MRI may show something there that a CT did not. I have Tarlov Cysts at the sacral nerve roots which can be an underlying issue contributing to PN and sacral pain. Just an idea that if your doctor is willing to order the additional imaging might provide you additional information.

Stephanies