Health Organization for Pudendal Education

So everything started back in December when I had a uti from hell, which literally took around 3 courses of antibiotics for it to finally go away. As the symptoms finally subsided I still kept on having a weird discomfort in my pelvic area; specially when/after peeing. I noticed that the symptoms would worsen and even feel like a uti after having sex with my new boyfriend. My mom (a dermatology doctor) told me to start taking antibiotics as she though I just kept on getting utis. However, every single time I would treat my so called infection, the one symptom that would not go away is that pressure in my pelvic area and discomfort while peeing. This made me start researching all over the web, till I found a condition called internal cystitis. All my symptoms were pretty similar to the ones from IC, however only from time to time I would that frequency or urgency to urinate. Most days I just kept on having the bladder sickmfort and pressure in my pelvic area. I started taking natural remedies for it, as well as changed my diet and it’s helped SO MUCH. However, for the past few weeks I started experiencing what I think it is vaginal spams/pelvic spams, and sharp pain in my clitorial/urethral area (I can’t really tell where exactly) at first it started as just random electric shock pain in my clitoris randomly throughout the day. However, as the weeks have passed the pain has been getting worse and worse and it’s more present. Now every single time I go to the bathroom I feel this super sharp, throbbing pain sometimes all the way from my pelvic are to my urethra (literally as if it was a line of electric pain all the way through) and sometimes only from my clitoris to my urethra. The pain can last from a few minutes to hours. It is horrible. I started researching what this could be and stumbled upon pudendal neuralgia and/or persistent genital arousal syndrome (since sometimes the pain would kinda feel like arousal but never to the point of orgasm). Since finding about these two conditions I have become obsseded with the topic and I’m so scared I have it. I sometimes feel the pressure in my pelvic area or above the pubic bone and if I press on them the pain gets sharper. I’m extremely frustrated and lost and have already gone to two urologist who basically didn’t help at all. I am meeting with a specialist in pudendal neuralgia next week but I wanted to know yalls opinion on my condition. Something that I have also though it could be is pelvic floor dysfunction (my muscles being to tight) which could explain why it only hurts after peeing and sometimes randomly, and would explain why I keep on having spams. But i don’t know. I’m rwally lost and frustrated and even my mom (doctor) has laughed at me for telliing her all this (she never even hear about pudendal neuralgia). I’m so scared to have sex, I’m so scared to masturbate (as I have read both can make the symptoms worse) and I’m just so scared Iam never gonna feel the same ever. I really am on the verge here. This has been going on for a total of 3 months. One hung I do have to say tho is that my symptoms DO NOT get worse with sitting or anything like that. If the feeling is present, I will feel it being the same from every position. Also I do suffer from constipation (hemorrhoids etc) since I was 20 (I’m 23 now). Wearing tight clothes etc does not affect it but one thing I do notice is that when I do relaxation breathing excercises or just regular pelvic floor relaxing excercises, I feel the sharp pain in a specific area in my vagina. Can’t tell where exactly. Overall is just my painful urination and sometimes the 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. So yeah this are my symptoms.... I’m really scared and would really like some insight on my situation please. Sorry for the long post and grammatical errors( English is my second language) I’m just really desperate and feel like no one can help me.

Pa. One more thing: i know I mentioned that I’m scared to masturbate and have sex while suffering from this. But if I do so, is it safe? Or will it make the symptoms worse?

Any help is appreciated. Thank you so much

Hi Pcgonza,

Welcome to the forum. First of all we are not laughing at you here. Many of us have experienced similar symptoms and we understand how devastating they are. I think the important thing is for you to get a proper diagnosis so that you can find the right treatments. Did either of the urologists know how to diagnose interstitial cystitis (IC)? There is an IC support forum where you may be able to find out how to get IC ruled out. I'm not an expert on IC but my understanding is that changes in diet help the symptoms and since your dietary changes helped you it is something to consider. But even if IC was one of your early problems, you could have developed addition problems such as pelvic floor tension causing pressure on the pudendal nerve. I don't know what country you live in so I can't suggest exactly where you could go for treatment but if you can find a physical therapist who treats chronic pelvic pain and knows about pudendal neuralgia, just to have them evaluate your pelvic floor for tension and for being overly contracted, would be a good idea. I was not properly diagnosed until I saw PT who figured out that I had PN. The doctors didn't have a clue.

Because the pudendal nerve innervates the bladder sphincter, pudendal neuralgia can cause many urinary symptoms. I think distinguishing between IC and PN can be difficult. Since you aren't having sitting pain, maybe pudendal neuralgia caused by nerve entrapment isn't as likely as maybe your pudendal nerve just being irritated as a result of the infections and your pelvic floor becoming tight.

There is someone with username coz69x who posted recently about some research being done on infections being linked to bladder problems. You may want to read her recent posts. Just do a search in the right top of this page using her username as the author, and the search word "infection".

I can't say for sure how sex would affect you -- whether it might make you worse. Typically if your pelvic floor is already tight and the nerves down there are irritated, having an orgasm which causes the pelvic floor to tighten and contract can irritate the nerves even more. But I am sure it would be difficult, especially at your age when people are the most sexually active, to avoid it completely. If you decide to try it, maybe you can take a warm bath followed by ice afterward to relax the muscles and calm down the nerves. For pelvic floor shocks or contractions benzodiazepines can be helpful. Some women insert valium pills vaginally to calm down the pelvic floor muscles. If the spasms are keeping you awake at night, clonazepam might help you sleep.

Have you tried any medications such as tricyclic antidepressants to relieve the urinary symptoms? I used Lexapro during the worst period of my symptoms and it took about 75% of the bladder and PGAD symptoms away. If it is nerve pain, you might find lyrica helpful. So, it might be worth trying something like that but you do have to keep in mind they are powerful drugs and you can't just stop taking them cold turkey. You have to wean off of them slowly. Drugs are not a perfect solution, they can help you get through this very difficult time in your life until you can find the proper treatment that will help you. Often there is trial and error until you find the right drugs for you.

Just trying to brainstorm any information that might be helpful to you. Hopefully other people will have some good ideas to add. I understand how desperate you feel because I was there once. I have a great life now so I just want you to know that I think you can get better with the right treatments. Many people who used to be on this forum have gotten better and moved on with their lives.

Violet

Hello Violet,

Thank you sooo much for your answer... I truly appreciate it.
But yes I am not sure if its PN, rather than just my pudendal nerve being irritated due to my infection and possible Pelvic floor tightness. I do think this is what it might be happening, since I have vaginal spams, and I have noticed that if I relax a lot or do deep breathing exercises while peeing, I experience a little to no pain. Either way, what really worries is the possibility of fully developing PN (as I have heard that the symptoms sometimes start mild, and can come and go) or developing PGAD. I say PGAD, because from time to time, i will randomly feel as if I was aroused... I cant pinpoint wether that is the exact sensation i am feeling but it isnt pain. My legs and feet get kinda tingly and numb and I just feel a slightly arousal sensation in my vagina. So I am really starting to freak out about that....

I live in the united states, Texas specifically. I have not yet being diagnose with IC because both the urologist I have gone to see, say its impossible for me to have it so young, and since i dont have as much urinary frequency I dont have it...... but what i always explain to them is that I used to have that frequency, and when I would have sex a flare (basically very painful spams of my pelvic area) would come. I literally wouldnt be able to leave the bathroom and the pain was so horrible I couldnt stand up . However, they still wouldnt diagnose me with it and didn twant to do any further testing, leaving me clueless and even more frustrated. I have read into the IC forum since those were my first symptoms and no antibiotics were helping, and all the treatments suggested as well as diet have helped me tremendously. Almost to the point of no flares, or pelvic pain whatsoever. But like I said before I am now experiencing this horrible discomfort while urinating, or passing a stool (it can either be shooting pain or just mild discomfort) and this sort of arousal feeling from time to time.

Im just very confused on what I might actually have, and am just frustrated and lost overall... I will try to have sex this weekend and see how I do. However I did try to feel up the area around my vagina to see if I would experience any pain and nothing happened... so thats good (I apologize for being so graphic). I really am starting to wonder if all this might also be psychological... and with all the searching, getting more anxious, stress etc I am just making it worse...I dont know to be honest, I have been pretty obsessed with all these since i started suffering from the IC symptoms. Good news is that im finally going to see the doctor specialized in pudendal neuralgia next week and maybe i will have some more answers. If i dont I really dont know what Im going to do.

Violet, if its ok for me to ask you; are you completely ok now? As in are you able to do everything you used to do before (sexually, physically, sitting etc). You dont have to answer me that as I know those are personal questions, but Im just trying to see if in case I do have this, there is a way for your body to actually go back to be exactly how it was before. I just miss my old me. I dont remember when was the last time i had a completely pain free day. Either way thank you so much for your help.

Paola

Hi Paola,

In answer to your questions, I have a great life now. I have almost no PN pain -- maybe once in awhile if I am very active it can get to a 1 out of 10 for a few hours. I can sit for many hours with no problem. I had PGAD all the time before my PN surgery. I am 99% or better cured of that. Once in awhile I just get a little twinge of that feeling. I can have a mostly normal sex life. Maybe the sensation isn't 100% as good as when I was young but it doesn't mess up my life. Because I have aging ligaments and I had SI joint dysfunction I have to be careful to avoid certain activities like jogging and heavy weightlifting but I can hike in the mountains and do light weight training.

Have you been able to get a high quality MRI to rule out any obvious problems in the lower spine, sacrum, lumbosacral plexus, and pelvis? What about an evaluation by an expert pelvic physical therapist just to see if there are any anatomical problems? Hopefully, the physician you are seeing soon will be able to point you in the right direction.

There are people who think their pelvic pain was related to anxiety and they had success using the mindbody approach. That did not fit my story but it's an option to consider if you feel anxiety is the cause. On the other hand, the symptoms you are explaining could be the cause of your anxiety, not the other way around.

I believe you will be able to find the right treatments to help you have a better quality of life. You may have to be careful of certain triggers the rest of your life but I don't think you need to resign yourself to a terrible life just yet. You are young and your body is wired to heal itself. Good luck with your upcoming appointment.

Violet