Health Organization for Pudendal Education

Hi,

I'm a female in my early 20's, and have been coping with PN for more than a year.

My PN started around 1-2 years ago and was progressive. I had cystitis very often and at first, it would ALWAYS heal after a few days of drinking a lot of water and taking herbs that would kill bacteria irritating my bladder.

Then one day I noticed that I started wanting to pee more and more frequently, but without any pain involved.
The frequent urge to pee led to me straining a lot because I always had the sensation of my bladder not being empty.
I thought that I had remaining bacteria and just kept taking plants and drinking plenty of water.

Last summer, I started having violent urges to pee and kept going to the bathroom every 5 minutes and I wondered what the heck was wrong with me. I would always think that it's because of stress, depression and maybe remaining bacteria so I would just do like I always did: a lot of water + plants... and keep straining, always trying to have the lasts drops out.

A few days later, I woke up with a feeling of urge to poo/foreign object in the butt along with lower tummy pain. The pain did only stay in the morning so I thought it was hormonal/stress/depression related. I was also really really tired, had feeling of nausea all the time + feeling that the bladder is always full. I kept going to toilets often and straining. I also noticed that I could hardly fart anymore. And like an idiot I kept pushing for my fart to come out because the sensation of trapped air was unbearable. (I was still having bowel movements every day).

Around autumn 2016, I had depression related crisis all the time: I was always tired and angry and it would irritate my nerves so much that I had the feeling that I had a cystitis again!!!! I kept staining until I realized that... I couldn't pee anymore!!!! No matter how hard I tried, NOTHING WOULD COME OUT. Same for my bowels!!! Feeling that I have to pee or poo but nothing comes out even if I strain!!! I also starting having intense bladder pain and electricity sensation in my vulva and bladder. I also have a heaviness/sensation of foreign object in the tummy along with pain.... it's so painful... it's torture to me. I didn't even realize that those symptoms were PN related because I didn't know of its existence...

I cried all night and yelled wondering was the heck was going on and called a urgentist who came home.
I explained my symptoms to him and he gave me antibiotics for bacterial cystitis. I knew that it wasn't it: I kept telling him: "But I don't feel the burning sensation when I pee!!! And I have bowel problems too!!! It must be interstitial cystitis + IBS!!!" (I had looked up online). He laughed and said: "You're paranoid, just take your antibiotics and you'll be fine in a few days." I took them and didn't feel batter. So I went to emergency hospital and told them about my symptoms. They made me wait 2 hours, then did a blood + urine test and nothing showed up. The doc' said that she had no idea what it could be.

I kept going to countless and COUNTLESS docs' (generalists, gynecologists, urologists, gastro-enterologists...) to be told the same thing a l l - t h e - t i m e: "nothing is wrong with you, nothing shows up on tests and you should go and see a psychiatrist. Months and months have passed because it sometimes takes months to get an appointment with a specialist.

I had been doing obsessive research for MONTHS on internet and I was convinced that I had interstitial cystitis + IBS-C and even endometriosis (I only have my periods a few times in a year and violent hairloss)

I've been wrongly disgnosed with IBS to be finally diagnosed with bladder sphincter dyssynergia by an urologist. He said that it wasn't a big deal and sent me to pelvic floor reeducation, saying that I just have a hard time relaxing. So I went to PF reeducation and noticed that some exercices (including kegels) would cause a violent flare (perineum pain and foreign object in the butt sensation + stronger urge to pee).

I endlessly was doing research and saw a YouTube comment saying: "I have IC, endo & pudendal nerve damage" I had no idea what "pudendal nerve damage" was and looked into it. Then bam I recognized myself in most things and started fearing for my life when I saw that there was no cure for it except for invasive and not satisfactory surgery.

I found a website about pudendal neuralgia and booked for an appointment with a neuro-urologist listed on the website. She gave me anti-depressants and said they we're going to start with that and see what happens! MIRACLE!!! I felt a LOT better for the FIRST TIME in a year and was soooo happy.... but it only worked a few days before the effects started fading.

The thing is. I have no pain with SITTING as every article on PN said I should have. So I made an appointment with my urologist and my physiotherapist and both said: PN is a very very very rare disease there is no chance on earth you would have this!!!! + you're so young!!!! STOP-BEING-PARANOID.

I still did more and more research until YESTERDAY, I strumbled across an article that pointed out the differences between PN and PNE. It said that chronic constipation and straining caused PN by stretching the nerve and that it was permanent damage that no surgery could fix VS PNE where the nerve is entrapped and that chances are that decompression surgery would work and fix everything.

..... I was in shock and started crying and yelling..... because if I had known this one year ago I wouldn't have strained/stretched the nerve and would only have mild damage VS now = constant pain, strong urgency 24/7 and impossibility to have a bowel movement without removing my own poo and crazy straining.

I still can't believe that this is my life when everything was fine no long ago. I would never have imagined that I had PN. A friend that's studying at university even told me earlier that I had PN for SURE but I wouldn't believe him because specialists I've seen kept telling me that I was paranoid and I'd be fine & that my friend was still a student and probably stupid scaring me for no reason.

I now believe my friend. And I also want to kill myself because my life has been hell due to long term depression and this is just the cherry on top of everything. This is just too much to handle.

I have an appointment tomorrow with my neuro-urologist.... I don't know which tests she'll do to see how much the nerve has been stretched..... I forgot to tell that my organs have severely fallen out of place and I don't know if I should have surgery for fear my PN gets worse.... the worst is that I told my urologist that my bladder was so painful (pointing at my vulva) and he laughed saying: "Well the bladder isn't so low!!!! What are you talking about?" I kept having my feelings dismissed. It's only yesterday that I realized that my organs have changed place, hence the horrible heaviness and foreign sensation in my belly....

Please help me...... I'm so desperate.... I'm so lonely... I'm in my bed - toilets 24/7. My life has been stolen from me..... help me please..... I'm suffering... what should I do...? I keep crying and begging to either recover or die... I don't wanna live like this.... it's way too painful.... if I don't get better I'll commit suicide due to going crazy...

Sorry if this was long but I really needed to vent it out...
Thank you so much to those who have the courage to read my horror story.....

Welcome PNgirl,
You are not alone many of us have suffered various symptoms like you and unfortunately some early on in life. I am so sorry this is happening and you are running up against doctors that do not understand. The FAQs on the homepage have info on what to try, tests to eliminate other problems that have similar symptoms, medications, etc. You may want to try a pelvic floor/PN knowledgeable physical therapist, they helped diagnose my PNE and they helped others with bladder/urging to pee issues. There is also a letter for medical professionals that provides an overview of PN and PNE.
Hang in there and please call a suicide hotline if you felling that depressed. I know this is hard to deal with and wish you had more support from family. We are your extended family and sympathize we the struggles. Early on in my struggle I tried to focus on the treatments and diagnostics towards getting better. I hope your doctor's appointment brings some clarity.
Janet

Thank you for your reply and support Janet...

I wanted to know if anyone on the forum has recovered from stretched pudendal nerve damage, or has AT LEAST
gotten to a point where he could live pain free but be careful not to trigger irritation or stretching again?

It would make me feel a little better knowing that I have a chance of recovery...

Hi PNgirl,

Yes, nerves can heal after a stretch injury, especially if it's not a severe stretch injury. It seems highly unlikely that your nerves would have become so extremely stretched from straining that they cannot heal. Just based on my own experience, I think it would take more than 1 year of straining to really cause an irreversible injury. The pudendal nerve is a peripheral nerve and it can heal from a stretch injury just as other peripheral nerves do. Also, nerves can stretch a certain percentage before severe damage occurs.

http://neurosurgery.ucla.edu/peripheral-nerve-injury
http://www.assh.org/handcare/hand-arm-injuries/nerve (click on the plus sign to expand and read about stretch injury)
https://www.uspharmacist.com/article/ma ... e-injuries

You are young and have a better chance of healing than an older person. I think the important thing is to stop straining and to start using some remedies to help you evacuate without straining. Things like pouring warm water over your private area to help you relax your urinary sphincter when you pee, or taking a warm sitz bath. Also keeping your stools the consistency of applesauce using laxatives such as magnesium citrate and a high fiber diet. The following page on our website will give you some other ideas.

http://www.pudendalhope.info/node/32

You are not alone in having your symptoms dismissed or being told they are psychological. Many of us on the forum, including myself, have been told similar things. I agree with Janet that you should seek professional help from a suicide hotline or psychologist if you are suicidal. There was a time I did not want to live because I thought I had no chance of getting better. I was so sick of seeing doctors who weren't able to help. But finally I found the right treatments and I am doing great now. I'm glad I continued to fight. It would not make sense to end your life now when you still have so many options to try. It's partly a matter of finding the right doctors and therapists who can help you. Have you seen a physiotherapist who specializes in pelvic pain and pudendal neuralgia? Are there any physicians near enough to you who specialize in pudendal neuralgia who you can go see?

Regarding your organs falling out, if the nerve is playing tricks on you it can feel like the organs are falling out or causing pressure when they really aren't. But a good urogynecologist should be able to tell you if you truly have organ prolapse. If you do, you can try using thigh shapers to help give you support to hold things in better. That's what I do despite severe prolapses.

The important thing is to know that you have options, you do have a chance to get better, and that most likely, eventually you will find healthcare providers who understand your situation, who won't dismiss you, and will be able to help you. You just have to stay strong and keep fighting until you find the right providers and the right treatments. You can do that and we are here for you to vent to and to answer questions if we can.

Violet

Hello Violet,

Thank you for your precious help. I'm glad the forum has someone like you to bring us all some hope.
If only I had found about PN earlier, I wouldn't have strained like a complete idiot and I wouldn't be in so much pain right now. It was all caused by myself because of straining for hours and hours and NO doctor told me that it was super dangerous and what it could cause despite me clearly telling them that I strained like crazy!

But I guess it's better to know now than later, or even never?
My friend is a blessing. It's thanks to him that I found out I could cause organ prolapse and pudendal nerve stretching due to him studying physiotherapy and neurology at university. If he hadn't told me, I wouldn't have the idea of searching "organ prolapse and pudendal nerve damage" on google. However, he told me that there was no cure for it and was for life???

Let me explain it to you: in August I didn't have any miction hesitancy but only urgency!!! I think that my muscles were tight because I was going under a lot of anger and stress at that time.
And then I damaged my nerve myself from straining and in no time I got myself to a point where I have to wait 20-30 seconds after my brain command to pee for miction to start. It is considered a severe injury if I have that much of a miction hesitancy? And impossibility to poo/pass gas? I know that the pudendal nerve can stretch by 10-12% of its original length before irreversible injury, but I have no idea about what test to do to know how severely I've injured it.

Here's my analysis after long research: I have a tendency to develop PN more easily than the norm because I have hormonal issues. I'm severely underweight so I must clearly lack estrogen (which is the hormone responsible for collagen production).
I don't have periods at all which is a big indication. It's always been that way...
This leads me to think that I would benefit from hormonal therapy, what do you think?
A lot of women give birth to many children and have their pudendal nerve extend by 2x while they're pregnant.
They often have organ prolapse too, YET they don't develop pudendal neuralgia or they do (develop incotinence) but it goes away after 1 or a few months at WORST. And that is simply because they produce huge amounts of hormones (mainly estrogen and progesterone) while being pregnant, which protects their body, makes tissues very flexible + thickens their hair.

Another worry I have is whether or not I should have surgery if I have organ prolapse. It's very uncomfortable... I've been feeling like I have a huge ball in my belly and that it weighs a ton. I can't wear tight clothes anymore because it's painful.

I was feeling at my worst yesterday because I still was under shock but I'll definitely do my best to save myself.

There's is something else that just crossed my mind...
If it's a stretch injury (no entrapment) where organs have fallen out of place, how is the nerve supposed to shorten itself send heal from the stretch if organ pull out the nerve? I just don't get it

Hi PN Girl,

Well everyone is different but I can tell you from my own experience that I started to develop organ prolapse in my 20's. My urogyn said that I most likely have a genetic collagen deficiency so the ligaments just will not support the pelvic organs. I did not develop pain until my late 40's and typically women don't have pain with pelvic organ prolapse -- just an uncomfortable feeling. I think maybe the only way the organ prolapse is related to pudendal neuralgia is that for me they are both caused by ligament problems. I'm not sure what the cause is for you though. I agree with you, it is uncomfortable, especially if I do a lot of lifting, so I have to be careful. If I wear thigh shapers it really helps though. There is no "cure" for pelvic organ prolapse although for some people pelvic floor repair surgery is successful. But for other women it just creates new problems. Since I have PN -- I will not risk it unless absolutely necessary because I don't want to risk going back to those high pain days.

I just don't know to what degree your nerves are injured due to stretch injury and whether they will for sure heal but I would certainly not rule out the possibility that you will heal. If you could see a good pelvic floor PT, they would be able to give you an idea of the state of your pelvic floor muscles and maybe help you to develop some strategies for relaxing the pelvic floor. You could also try EMG and PNMLT tests to asses the motor function of the pudendal nerves. You can read more about those on the website. Scroll down at the following link: http://www.pudendalhope.info/node/69

Have you had a blood test to determine if you are hormone deficient? I used bio-identical hormones for awhile but I don't think they made any difference with the pudendal neuralgia. I used them for osteoporosis.

So, regarding the huge ball in your belly, that does not sound like the organ prolapse I experience. Have you had any imaging like MRI to determine that there aren't any obvious concerns like tumors?

Violet