Pudendal Nerve, or bladder spasms? Or both?!

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 and my physio says yes I have a hypertonic pelvic floor, but not 100% sure this is the root cause.

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!) Sometimes urethra burns when I urinate, though not always. If I try and jog, all the pain and needing to urinate feeling increases immediately, and I'll have to pee 4 times in one hour, feeling like I'm desperate to go - I'm not!

When all this started, I was training for a marathon. And stupidly, I was doing Kegels when I shouldn't have - already had a tight pelvic floor. Just before the mild UTI symptoms started in June, I had two separate instances over the space of a week where all of a sudden I went from not needing to urinate at all, to feeling desperate. When I went, not much came out. But later would urinate normally. This was the very first symptom of all of this. Unfortunately I could have had a UTI at the time, but just went onto antibiotics without a urinalysis.

Here's the confusion for me - I had a pudendal nerve block which temporarily got rid of 90% of my symptoms. I was thinking I could just have bladder spasms, I'm on medication now for that but not on it long enough to tell if it's doing anything - Betmiga. I do feel my symptoms are predominantly bladder related, I wasn't sure how the pudendal nerve could be involved. But it must be, if the diagnostic block got rid of the pain?

Any thoughts/experiences/comments most welcome!

Thank you

8 Replies

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  • Hello,

    Your story is complex.

    Just wondering if anyone has suggested Botox for the spasms.

    This is merely a suggestion as I believe some urologists administer this for different conditions.

    I have no exoerievd with your condition but I hope someone may advise.

  • This sounds like what I am currently going through. I am so depressed about this. Minus your athletic training, my situation and symptoms mirror yours. A UTI back in December 2016 started all of this, and now people are just telling me either it's all in my head or I just have an over active bladder. My anxiety is through the roof and I believe, makes the need to urinate increase! This has even caused problems in my marriage. I am scared to talk to my significant other about my discomfort, because at this point people think I am a hypochondriac. I have also noticed it seems like my pain/discomfort intensifies after I have an orgasm. I have a physical scheduled for next week, so maybe I can start to better sort this all out.

    Are you feeling any better?

  • Gosh I'm so sorry you're going through this. I have gone through a few weeks of feeling a lot better, but am now in a mini relapse.

    Firstly, it's not in your head. Anyone who tells you this is a crap doctor/consultant, and should find alternate employment!! As should any who say oh well you'll just have to live with it - phoney baloney! You are not a hypochondriac, you're in pain.

    I'm so sorry to ask but I wasn't clear from your post - are you male or female? I'll give you more suggestions based on your response.

    Clare

  • Sorry just looked at your other posts and see you're female.

    What you describe is pelvic floor dysfunction. Mine was set off my an irritable bladder after lack of estrogen. Looking at what you wrote, it ties in with a) appearing after a UTI (painful blighters, aren't they!), b) Worsening of symptoms with stress and c) Worsening of symptoms after orgasm.

    If you think about it, what generally does the body do when it's in pain? Tense up. Our instinct is to "guard" from pain, which causes muscles to tense up. Your pelvic floor is a big series of muscle. And yes, it can get tense during the pain of a UTI for example, and unfortunately stay that way. If you yanked a muscle in your back, and didn't get physio or anything to relax the muscle, you end up with a knot in that muscle. Same goes for the pelvic floor. What happens to the pelvic floor when orgasm occurs? It contracts, it tightens - you're feeling pain. This is typical of PFD. It is fixable!

    What happens when your pelvic floor is "hypertonic" / too tight? It gets muscle knots and can go into spasm. What can spasms do? Make you feel like you have to pee, irritate the urethra and certainly irritate the bladder itself. Which is ironic given that the bladder is what caused the symptoms in the first place, but the original source of the pain is gone! And what do we all do when feeling the urge to pee? Clench the pelvic floor. Which makes the pain worse, which causes more stress.. it's a cycle that needs breaking.

    I can only advise you based on what works for me.

    1) Pelvic floor physiotherapy. This is a must. At the very least get an evaluation to confirm the status of your pelvic floor. Where do you live? Purchase the Pelvic Pain book by Amy Stein. Also look up Isa Herrera. Reading Amy Steins book was a revelation for me. There it is in writing, with the solution. It's not a short term one, but medium-long term, absolutely. Get the physio to assess your abdominal muscles, glutes, back and hips. Tightness of these can cause urinary urgency, because they can pull on your pelvic floor muscles. My abs are notorious for doing this. After lots of physio, I was able to run 5k 3 weeks ago, up hills, with barely a bladder niggle. Physio works. But I am in a flare now, not caused by running but I sat up in bed with my laptop, not realising I had my ab muscles engaged for 2 hours. My bladder went nuts, I pulled my pelvic floor. Darn it! But straight back to physio. Flares become fewer and far between. Persevere, and don't panic.

    2) Stop caring what other people think. This one took me a while. I had several sessions of counselling where I ranted and raved about crappy consultants, how this affected my life and how I wanted my life back. I cried and shouted. And I felt better! I held less tension in my body. I was depressed too - pain heightens this. The counselling sessions just helped get the worry, stress and anger out my head and left at the door. Anxiety is a natural reaction to pain, but doesn't help resolve it. Counselling was key for me. Physio helps the physical aspect, and counselling with mental health aspect. Your mental health is just as important as your physical health - look after both.

    3) If the physiotherapist confirms Pelvic Floor Dysfunction, and a hypertonic pelvic floor, if they're a good physiotherapist they'll want to involve the assistance of your hubby in treatment at home. Highly recommend purchase of the IC Magic Therawand.

    What scared me the most was the term Interstitial Cystitis being thrown at me, because nobody knew what was wrong and some treated me like it was all in my head. Like heck it was. IC, in my opinion, can take several forms - PFD certainly mimics the symptoms. Don't let it scare you!

    I found the following publication very useful, don't read the words Interstitial Cystitis and panic, I did initially - no need:

    icawareness.org/NewParadigm...

    - I fit under "phenotype 3" - "#3 - BPS: Pelvic Floor / Myofascial Pain Phenotype - These patients often have a history of sports or orthopedic injuries. Upon exami- nation, they have pelvic floor tension and the presence of trigger points in their pelvis, abdomen, back and hips that trigger severe symptoms when touched. They may have less diet sensitivity, normal or larger voids, may sleep more comfortably when their muscles are relaxed. Bladder instillation of lidocaine is NOT generally helpful."

    I can eat chocolate, oranges etc and feel no difference to my bladder. I can hold 350ml of urine in my bladder - that's a lot! I did not find Lyrica or Amitriptylene helpful, which makes sense. Skip to page 4 of the above document - Myofascial Pelvic Pain

    by Rhonda Kotarinos. She explains very well how stress and anxiety affect PFD.

    I'd mention that although diet doesn't make much difference, avoid known bladder irritants that irritate the bladders of most people anyway - coffee, fizzy drinks etc.

    For me it's physio physio physio! And counselling when I feel I need it. I'm in a flare right now, but mentally I'm good - not anxious, not stressed. I know what's happening to my body. Just have to help heal it. It can be done!

    Ask hubby to go with you to the physio and to the counselling, even if he just sits in the waiting room. Involve him in the process.

    You will get better!

    Clare

  • Thanks Clare, I really appreciate your detailed feedback. I got scared thinking what could be wrong with me --- Dr. Google had me thinking it could be cancer or Pudendal Neuralgia or something, but honestly I think its just tight pelvic floor muscles. I get muscle knots all in my back and shoulders, so it doesn't seem like a stretch to think I could also get these tension knots "down there", lol. I do notice it seems to get worse when I am stressed or upset, so I have been focusing on trying to stay relaxed more. When I get a good night's rest I am usually better and have a good day, no running to the restroom all day.

    I thought for a while I might have IC (yikes!) but I could not determine a trigger (food, coffee, beer, etc.). You may be right in that it could be "phenotype 3" --- seems very likely.

    My wife is supportive to a point, but because I suffer from anxiety she just feels my stress level aggravates my symptoms and that I should take Lexapro daily to at least rule out if this is the cause of my bladder issue. I disagree and do not wish to alter my brain chemistry, but I'm tired of talking/fighting about it. Sigh, lol. She's is probably right.

    I have a doc appointment next Tuesday and I will be sure to ask for a referral (i'm in the US with shitty health insurance that requires referrals) to a Physical Therapist who specializes in diagnosing PFD. I'll let you know what happens.

    Many thanks again for listening --- it means a lot. :-)

  • Anyone when they get something wrong with them is likely to worry, so don't ever feel bad about that. Dr Google is both a blessing and a curse!

    I have taken Lexapro in the past too - it's fine, but to me it's a band aid on a wound that needs more attention.

    It's multidisciplinary approach - counselling & lexapro together worked for me. I understand completely about not wanting to alter brain chemistry, I totally get that. But try a low dose perhaps, to help you over this life blip. We all get them!

    We need referrals here in Ireland too most of the time, it's a pain in the..bladder! Where in the US are you based? Can you afford to go private?

    Also do you mind me asking how old you are? Hormones can play a role in all this too, not all the time, but might be worth getting a blood test to check.

    You will get there! Even just make out a list of things to do to help you start planning treatment. 1) Referral to physio. 2) Daily walks with the Mrs. 3) Counselling sessions to help with anxiety - discuss Lexapro with your counsellor too, not just GP. 4) Order Amy Steins book - its the best read!

    Keep your Mrs on board with what you're doing. Wake up in the morning and be like, sod this! What's on my list for today to help me get better? A walk? A good healthy meal eaten with the other half? Organising physio appointment? Seeing friends, even just one locally. Keep going and you will find yourself well again.

    Best wishes

    Clare

  • I'll be 39 in September with 40 around the corner ~ LOL! So yeah I'm going to ask my doctor if the blood test next week will include a thorough evaluation of my hormonal levels. My periods are fairly normal, but I have noticed a couple of things over the past year: 1) they are getting shorter/lighter and 2) I get REALLY sad and emotional a couple of days before it starts. I never used to have this problem. I would ask my mom and grandmother about their history, but unfortunately both had had hysterectomies by they time they were my age, so neither went through actual menopause. I've been working on being healthy overall, cutting back on drinking and exercising more. I used to be very athletic - playing softball and hiking - but after moving to a different state, away from my friends, I have gotten lazy. I need to get back to being my old self. That's one reason why this bladder thing has given me the blues... I just want to feel normal again.

    I live in Texas and actual have okay health insurance through my employer, it's just that it requires that my GP evaluate me first before going to specialist. I am currently in counseling and that has been pretty good. She (the counselor) wants me to go on Lexapro too, even if it's just short term. Perhaps I will seriously consider it.

    I'll check out Amy Stein's book... Thanks!

  • Oh I know all about the bladder bother giving the blues, you're not alone on that!

    It could (or may not quite yet) be worth referring to a gynaecologist, or a Uro-gynae just with regards to the lighter periods and the associated blues.

    My own personal opinion would be to give the Lexapro a go, tell your GP if you're starting taking it, and get regular reviews. It made me feel balanced, neither bad nor very good - just good. The anxiety went away. Sometimes the body needs to remember what it's like being in an anti anxiety zone!

    If you're in Texas, somewhere like this for PFD may be worth a try. Tho your GP, if they're good, should recommend a physio who specifically deals with PFD : stdavidsrehab.com/programs-...

    Best of luck. Kick its ass!

    Clare

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