Tried a bi lateral pudneal nerve block and feel worse

[alexchase93]

I am 24 year old dealing with chronic pelvic pain and I have been in pain for a long time now, but for the last 2 years
It has been getting worse. My original source of pain was pain on one side of my abdomen and sometimes
On the other side. Since March 2016, the pain is now attacking right underneath my belly button and
my urethra also. Loss of feeling when I urinate, weaker/uncomfortabe erections, feeling blotated all of the
time have been on the downward spiral. I have had physical therapy done last summer, to no evail. Then
i waited forever to have a nerve block done on my abdomen and no such luck. Then a few days ago I had a
Pundeal nerve block done, as I had many of its symptoms and in the past have taken Elmiron for IC, which did nothing also, 3 years on it. The pudneal block has made everything worse. My highest source of pain is the shriveling of my
penis, 24-7 and constant pain and pressure. My urination now has lost what little relief it has had and is now
Making me nauseous, causing me great anxiety and stress. I had the block done 4 days ago and after it for a good 8 or 9 hours my penis was numb and i could barely feel myself pee. While I have streams now, the
Shriveling and penile discomfort still remains. I'm new to this site and if anyone has similar stories or wants to
Compare, it would be highly appreciated. I am losing hope and I am afraid of qutting my job and my
world is shutting down! Please HELP!

[Hopeitworks]

Welcome Alexchase to the forum,
I am sorry to hear you are going through this right now. I am new here as well, therefore I am no expert and can only give you my advice. I understand how you feel when you say you feel hopeless and fear you may lose your job. I suffer from PN symptoms as well and know how it impacts your day to day life. Have you had an MRI? If not I would suggest you request one.
If the injection relieves your pain that is considered a positive response to the nerve block and the pudendal nerve may be the source of your pain. If the injection did not provide any relief there are two possible conclusions.
1. The pain is not as a result of the pudendal nerve or
2. The physician did not get close enough to the pudendal nerve to feel any effects.
After a pudendal nerve block it is possible to evaluate whether the block hit the target of the pudendal nerve by testing the perineum, clitoral, and anal areas for loss of sensation and numbness. Sometimes the physician might order another block four to six weeks after your first block, to make sure that they can entirely rule out pudendal neuralgia, by trying to see if they can get close enough to the nerve again.
Occasionally medication from the nerve block can wander into the area of the sciatic nerve making it difficult for the patient to walk. This problem typically subsides within 24 hours.
I suggest you notify your doctor of your symptoms and don't be afraid to advocate for yourself! Are you taking any medications? Please don't lose hope you are not alone! Stress seems to exasperate PN symptoms in a lot of people.

Wishing you luck,
Hope

[alexchase93]

Thanks for the response Hope. I had an MRI on my pelvis done and there was
Nothing found on that. I been just taking flomax since I was 19 for the painful ejaculations and
Mybriteq for overactive bladder. I used to take Elmiron and still follow an IC diet, but the
elmiron did nothing and i just follow the diet just to keep healthy and sane. They want me to
Have another block done but the pain is worse and I don't want to put myself through that. Can
The block cause irritation even though it didn't help matters?
The pain was at about a 7 a year ago and is now at a 9. The right treatment has
Yet to come my way. I'm feeling like I am losing this battle and my options.

[sadie]

Alex hi i am checking in on you via my phone so this will b short.... two side effects of the drug you have been on for IC are abdominal pain n up set stomach, which i think you mentioned, you were having . Second i found things can be really flared up after a pnb. for at least a week for me. did your have steroids or just a numbing agent in the pnb?

if your dr oks it, maybe you should try some melatonin or half a benadryl to get some sleep tonight . That way you can let us know if pain has calmed down in a few days .. what state do you live in or near?

so sorry n as Hope wrote you, you are not alone...God bless your health n family Sadie

[alexchase93]

Sadie, i had the block done on Friday morning and it's been four days. I felt
Like the numbing sensation was dying down a bit but today it felt just as worse as it did on the first day. The Elmiron
i haven't been taking in a while. The abdominal pain has now moved into the bladder and my voiding is starting to become affected even worse. The pain before the nerve block is more desirable than what I feel now. I live in Michigan.

[sadie]

Alex Did you check the list of doctors that are on the forum here? do you know what started all of these symptoms in the very beginning?
What types of doctors have you seen already? Like an Endo or urologist etc?
sadie

[sadie]

Alex

this is my last post that i can think of ....but i am sure others are out there and can chime in ..i cut and pasted what was here on the site under Michigan for you , and it said Dr Peters sees men in his private office too.

Shop around till you find a doctor with great reviews and that you feel will listen to you, and do not be shy about telling these doctors that you are at the end of your rope so to speak.

I really loved dr Conway in NH . Maybe you can pay for a phone consultation, and just tell him where you live, and how old you are, and what you have been going through and Alex tell them you are desperate. They will understand, especially his office.

I had a pnb (NOT WITH DR CONWAY) that cause PGAD and I was in agony 24-7 and could not eat or sleep . It was so sever that I was not sure if I would make it....and they listened and they heard the desperation and pain in my voice and they helped me . I personally am not cured but I could never have helped anyone even 2 years ago, so you will get there.

I am not a nurse or a dr , and as I am not a man, I am trying to see if I can get a male member to post and help you , but if not, please call one of these doctors as you need hope and a real diagnosis and the proper blood work and medications etc.

You say that you have not been on the Elmiron for a while ..what does "a while" mean, as some drugs can stay in your system longer then others and some can be out of your system fast , but the side effects can linger .

I know this is all new to you and you are only 24 so I am spelling things out because at 24 I didn't even know what a forum was.

So here is my last tip, always ask any drug related questions to a pharmacist, like at your local Walmart or Walgreen's etc. Ask a few different stores the same drug question and weigh the answers. Pharmacist know more then the doctors about meds. They are a free and valuable tool, as meds can cause all kinds of problems even if you are the one in a million that gets that rare drug reaction...

Here is Dr. conways # 603-883-3365 maybe he can give you some advice and you can fly out to see him. If you think you are to sick to fly I understand, as I had to take a toTON of sedatives (i was like a lump) and they had to put me in a complimentary airport wheel chair and gave me priority boarding . I had a girl friend go with me but the air port "guy "pushed me in their chair all the way and through the search area too. They were wonderful. Let people help you Alex. You will get help , hang in there.

Good night Sadie

Michigan

Kenneth M. Peters, MD sees pudendal neuralgia patients at Beaumont Hospital Women's Urology Center. This is a multidisciplinary center designed to treat women with Chronic Pelvic pain. The center has fellowship trained physicians, nurse practitioners, pelvic floor physical therapy, integrative medicine and psychological services.
Dr. Peters and his team believe strongly in a multidisciplinary approach to the management of chronic pelvic pain. Since 2004 he has been doing pudendal neuromodulation for voiding and bowel dysfunction and chronic pain. More recently, he has had many patients coming with the diagnosis of pudendal neuralgia and PGAD and has had good success in properly selected patients.

The contact information is:
Kenneth M. Peters, MD
Beaumont Women's Urology Center
3601 West 13 Mile Rd
Royal Oak, MI 48073
Phone: 248-898-0898
Website: womenshealth.beaumont.edu/womens-urology-center

Dr. Peters also sees men in his private office:

Comprehensive Urology
31157 Woodward Ave.
Royal Oak, MI 48073
Phone: 248-336-012

[alexchase93]

I actually saw Dr. Peters, he referred me to the doctor who did my nerve block. I was Elmiron for 4-5 years. I have been seeing a urologist out of UofM and have had scopes done there, as well as Urodynamics test, and nothing is abnormal, in terms of the structural abnormalties. On my Urodynamics test, it was noted that I did appear to have pelvic floor dysfunction, but at the time that was not even suggested. Symptoms have changed and I have been dealing with this since I was 16-17. At that age, I had symptoms of urinating a lot but there was no pain or discomfort. I was so used to peeing a lot, that at my football practices, every break I'd be running to the bathroom to take a leak. At that time I had been weightlifting and playing football for a few years. Prior to that, I had a few accidents falling on my back or tailbone area, other than those incidents, that's only physical trauma that I can think of. Then I started to have a few stining ejaculations followed by what I thought was a UTI feeling which lasted less than a week. Another thing I remember was after running a sprint, I would get this intense burning feeling in my anus/prostate region. This came and went, but the last time I tried to sprint and run fast, it still happens. Therefore I refuse to run, as the burning always happens. Then in my senior year of high school on my spring break, I woke up to the feeling of pissing out glass and then not being able to completely empty my bladder. This lasted a good 5 months and I did not masturbate for 5 months because the pain afterwards was so severe. I saw a few urologists then and they told me it was all in my head. The same guy that said it was in my head scoped me and put me under, they found a small stricture but even after that the pain was still there. Finally at 19, I was put on flomax and that helped some flow issues and painful ejaculations, but still the urinary discomfort was huge and my bowels/bladder at that time were so mixed up. Everytime I had to pee, i ended up taking a shit, this went on for 2 years and I lost a lot of weight because I was using the bathroom so much. I was also on an overactive bladder med that low and behold had a huge side affect of messing my gut. At this time I was also on Elmiron, as my patience was wearing thin at what my problem could be. At 20 I had a colonoscopy to rule out any chrones or colon issue, there was nothing there. At 21 I was put on Mybriteq and slowly but surely the immense bladder pain and discomfort slowly faded. I was able to actually hold my pee and my streams were thicker and I could hold my urine longer. My bladder became strong again and the IBS symptoms went away too. With that feeling of being on the up and up, I went back to working out and riding my bike, also having a normal sex life which I hadn't up to that point. I was feeling back on track and enjoying my body, which I felt like a prisoner in. Sure there ups and downs, and flares nonetheless, but they were few and far between, especially compared to years prior. The reason I thought my pudneal nerve became shot was because I was riding my bike everyday for at least 5-6 months, for 2 hours a day. A lot of this pain stared to come back around that time, slowly I might add so I didn't think much of it. Around March 2016, the pain in my pelvis area worsened and felt like I was bloated and carrying an extra weight around at all times. The muscle soreness and ache stayed constant no matter the circumstance. I was so pissed that physical therapy didn't work because I had good hopes for that. Time passed and I was just living with the pain. Last year it was tolerable, but the sexual function was getting a little worse. Weaker erections, I was turning into a premature ejaculator for a long time, which was embarassing as i had the opposite problem a year prior. So without working out, any kind of sexual relief, and just sitting there, the pain is always there constantly. The only time I could get any relief was laying down flat on my bed. I had to alternate sitting and standing a lot , especially at work, since I am a custodian, work is physical. Now even sitting is putting too much pressure on my bladder and penis since the nerve block. The nerve block seems to have irritated it even worse and the muscle aches in my abdomen and pelvis are taking a backseat to the pain i feel in my penis and bladder.

Symptoms as of now:
Erections are still weak, not even getting morning wood anymore.
Penis has been shriveled at all times, almost numb feeling.
Bladder discomfort, pressure and fullness.
Even voiding doesn't give me the sense of relief.
Bladder is starting to tense up more, not relaxing and i get nauesous after I urinate sometimes
Penis shrinks as I start to pee, it used to thin out.

[Hopeitworks]

Alex,
Do you know what kind of MRI you had? You may not have had the correct one. You should double check to make sure you had a 2T MRI-N. I agree with Sadie about the side effects of your medication causing abdominal pain. Maybe try one of the other doctors Sadie suggested. Also if you really do have IC try OTC medicine called Prelief before meals and if you drunk coffee or soda.

Don't give up something will work!
Hope

[alexchase93]

Hope, I believe that I had a pelvis or abdonimal scan. I'll have to double check my records.
What is a 3T scan?