Pudendal nerve or another nerve?

[cjmca]

Hi all

Last June I started to feel like I was getting a UTI. Mild dull pelvic ache around the mons pubis area, and the feeling of needing to urinate when I didn't - again very mild. Was put on around 6 different types of antibiotics, even though urine samples sent to lab came back negative for infection. In July I was admitted to hospital for investigation as my symptoms were very gradually getting worse. Still UTI thought as culprit. Urine and bloods clear so that theory was quashed. I had a cystoscopy done which I found very painful in the urethra. Bladder wall "looked perfect". I had MRIs and ultrasounds, all clear.

My urologist who did the cystoscopy said it was a tight pelvic floor that was causing my pain. I've had a tight pelvic floor historically, and never had pain like this. I've been getting physio since andmy physio says yes I have a hypertonic pelvic floor, but it isn't that bad.

Now, my symptoms are what feels like constant sort of burning pain in the mons pubis area. I just can't tell from exactly where, above or below the pubic bone. It could be my bladder. Wearing tight clothing makes it worse. I'm wearing underwear 2 sizes bigger than my size. Sitting doesn't help, I feel the mons pubis/bladder pain worsens. My urine stream seems slower, and hesitates a bit. Sometimes it takes a bit longer to start urinating, other times I start pretty much straight away. Sometimes I get pain when urinating, mostly what feels like some kind of wave of discomfort when I finish urinating - a spasm? I feel something similar to the urge to urinate all the time - that sharpness. Although I just ignore it and can go 7 hours without urinating (Netflix binge on Xmas day!)

My health history likely makes diagnosis more complicated. I've been in premature menopause since my early 20s, I'm now 34. In October I found I just couldn't lie on my side, it felt like horrid thudding pressure, I think in my bladder. I started using topical estrogen and this particular pain disappeared and has not returned. But I still have all the other aforementioned issues. Im now on full HRT and my blood estrogen levels are normal, but for a long time they were very very low. I was prescribed the pill in my 20s as a form of HRT but it made me very depressed and I was offered no other alternative, so I just didn't take anything.

I do have mild to moderate osteoporosis in my spine as a result of the long term low estrogen. I have a few discs in my back which show mild bulging and degeneration, not linked with the osteo.

I had a tummy tuck in January 2016. I healed really well and my scar looks very good. I was back at work after 2 weeks. I had no symptoms until 16 weeks after fully healing.

I started to train for a marathon in April. When my pain started I was running a total of 20k a week, swimming and walking. I had gait analysis which showed a "locked hip".

Here's where I'm confused and could really do with advice. After seeing multiple consultants I was referred to a pain specialist. He felt it could be a pudendal nerve problem. He said he'd knock me out, do a test of sorts and if that was positive he'd do a block. Whatever test he did made the nerve react and he did the block. 2 weeks later I realised I had very little discomfort wearing a seatbelt. I stuck on my normal size underwear and jeans and no pain. I tried a very gentle jog out of curiosity but had to stop after about a minute, felt I was irritating... my bladder?

Then it wore off after about two weeks. I was pretty upset. I didn't understand that the block was probably diagnostic. I had been booked in for a second block but I cancelled it thinking I was better.

Booked in for another block on the 23rd and went in, the pain doc surprised me and said that he wasn't going to do a PN block again but an iliolinguinal block instead. I feel bad because I find it very difficult to explain my pain - I had mentioned that sometimes my duvet just touching the area sets it off more, but this only happens on occasion and for me only represents 5% of the overall problem. I should have explained myself better I think. But he asked me did I have vaginal pain or labia pain which I don't really, the odd 2 second lightning fork in my inner butt cheek, rectum, clitoris. But this has probably only happened 10 times. And I set something off when I used estrogen cream externally on my urethra - burning that lasted for days. It's hard to separate it all. It's 6 day after the iliolinguinal block and I feel no different, but not sure if I would at this point. But iliolinguinal wouldn't account for urinary symptoms, which is where all this started.

Can you have a pudendal nerve problem that is mainly urinary in nature and not much else? Or, could it be iliolinguinal from the tummy tuck and my nerves healing wrong as my pain doc supposed? But if so, why did I get such lovely relief from the initial pudendal block? All aspects of urination returned to normal, the pressure feeling in the mons pubis went. And if it is pudendal, what on earth caused it? And if I get a few blocks closer together, could the pain go permanently? But a nerve block feels like a band aid, not treating the problem. I read about the Sayer clinic in London and thought that might be an option to try and get to the root cause.

Thoughts very welcome!

Thank you
Clare


Edit - Forgot to mention - itching. Arrrrgh! Sometimes overwhelming, like random prickly heat - perineum, anal area, labia. Thought this could be related to lack of estrogen. Use topical cream but sometimes it just returns. I've had pelvic floor physio and I don't react much to physio pressing on internal trigger points, although the muscle there feels tight like it needs a big stretch. The physio is uncomfortable, but doesn't result in nerve pain, hence my physio didn't think it was pudendal. I had nocturia early on but this stopped after starting on estrogen. I sleep through the night.

Colour me confused (and in constant pain) by this whole thing!

[Violet M]

Hi Clare,

Well, you may have answered your own question just based on the fact that you responded positively to the pudendal nerve block and had no response to the ilioinguinal nerve block. You should have noticed something by now from the ilioinguinal nerve block if it was going to help.

I had severe itching during several phases of my PN journey. I also had many urinary symptoms similar to what you are describing. The pudendal nerve innervates the urinary sphincter so yes, you can have urinary symptoms if that is the branch of the nerve that is affected. So, I don't know if you have a pudendal nerve problem or something else but many of your symptoms sound familiar. Have you had any imaging of the hip? We have some gals on the forum who had pudendal neuralgia associated with femoral acetabular impingement and labral tears. You can read Lernica's most recent posts on the forum to learn more about that topic. She hasn't posted in awhile but her previous posts are still relevant.

If it's pudendal I can't say for sure what caused it -- sometimes there are multiple causes - such as the tight pelvic floor, the jogging/exercise, and the surgical history. I don't know if they tightened muscles during that surgery that could have affected the pudendal nerve or nearby structures. You could ask if scar tissue from this surgery could have developed in the area of the pudendal nerve. The other question is whether it is the peripheral pudendal nerve that is affected or the S2,3, or 4 nerve roots.

Over time you will get this sorted out if you can find the right providers who are truly interested in figuring out what the problem is. It sounds like your pain doctor is at least trying to help you sort this out so that's promising. Some people do get significant long-term relief from a series of pudendal nerve blocks but there are some risks associated with any invasive procedure so you should be aware of those risks before getting too many blocks. If something less invasive helps that might be the way to go.

Violet

[cjmca]

Hi Violet

Thanks so much for your reply. I'm not convinced it's the iliolinguinal nerve, it just doesn't seem to fit the symptoms. I know the block can take 2 weeks to work so I will give it another week, but I haven't noticed any difference at all so far.

I had a physio session with Maeve Whelan in Dublin today, top pelvic floor physio. Went through everything and she did pelvic floor physio - I thought I was going to expire. I do have muscle tightness around the pudendal nerve for sure, she felt this was enough to irritate the nerve. The treatment was very uncomfortable, didn't elicit sharp nerve pain as such but felt like massaging a big bruise! Now my mons pubis is burning but so are my lady bits - don't ask me where exactly, I can't quite tell. Just a general burn.

I think what I'll do is get another pudendal block, as a diagnostic, and if I get relief again then I hope that it's the root of the problem. And to be honest I'd just like a break from the pain Then I'll keep going with the physio, and hope that something just does the trick, permanently! It feels like a pipe dream though

Thanks again
Clare

[Violet M]

Hi Clare,

Well, Maeve has been doing this for awhile so hopefully she will be able to help you. Would you be able to post where you get your nerve blocks from? It may be helpful to some other patients from Ireland to know who to go to. Good luck with your future treatments. Hopefully you are on the right track and will experience more relief soon.

Violet

[Simon94]

Hi Clare,

Thanks for sharing this information. I hope you will find the best solution here. Best of luck for your future campaign.

Cheers