Health Organization for Pudendal Education

The first week of March was hell for me. Suffering from PN for 23 years has never made me depressed. But that week was pure hell. On March 5 I attempted suicide after a week of frustration. I awoke to a bizarre place--an unlocked psych facility, with armed Mental Health Aides(MHAs). It's built around the ER, so it's not only open, but people can easily walk out unnoticed, or attack the ER staff and patients. So, armed they are.


I received 12 shots of Haldol, after receiving 4 in the ambulance. It did not calm me down, in fact it made me psychotic. Since this is a well known adverse reaction, and it means another drug should be used. That didn't happen.

I was transferred to a facility that they knew nothing about and it was hell--but that's a story for a law enforcement/medical malpractice forum.

At the locked psych facility I was sent to, they gave me 10 more shots of Haldol, put me in 5 point restraints in the "Observation room"--where you have NOTHING, just you, a bed chained to the floor, and a huge window so all the other patients can view how crazy you are.

So, was I clinically depressed because of my PN? Nope. I was depressed and suicidal because I had bronchitis.Well, really from the treatment for the bronchitis. I received 30 oral steroid tablets (3 scripts for 10).When I finally got in to see a psychiatrist, she went over my recent history, asked about me, my life, my outlook, etc. She and I went over all my current meds. After an hour and a half visit, she told me "I don't get this. you don't seem like a person who would try to kill yourself. Excuse me for a moment, I need to check something"

She came back with a sheet of paper, and a bright smile. She said " I know what happened. You've had bronchitis for several months now, right?" I answered that I had, and she said the steroids made you suicidal. I had never heard of this, and she said that long term (over 10 days) of steroid use can cause severe depression. She said many doctors don't even realize this.

One mystery solved. Then April arrived.

The second week of April I suddenly became extremely depressed (within the course of a day). I thought about suicide all day...I wanted to make sure I did it right this time. I thought about what drugs to take. I took 180 blood pressure pills. And ended up in the same unlocked ER/psych facility. 4 shots of Haldol in the ambulance, 10 more in the psych ward. Guard yelling at me that during my escape I tried to take a guard's gun (I did), and I told him I was going to kill him (I really don't remember this).

Long before I saw the psychiatrist, I looked up Haldol adverse reactions---sure enough, when taken with certain anti-depressants (I have been using Cymbalta for back pain), Haldol (which can hang around in your body for weeks after taking it) can cause severe depression. Mystery #2 solved.

But what "cured" (or made me pain free for 3 month so far) the very same Cymbalta that caused the interaction with Haldol, has been my wonder drug. So, if you've never tried it ask your doctor if you should. It obviously won't work for everyone, but as long as your doctor thinks it's safe for you, why not give it a whirl??


Thanks for listening....have a pain free day. You deserve it.

Stacey

Hi Stacey,

I'm glad to hear you are pain-free now. It's unfortunate that you had to go through so much though.

I think it makes sense to try all treatment options. Most people eventually find some treatment that makes life bearable.

Violet

Hi Stacey,

Yes, I'm so glad that you are not feeling pain anymore. As Violet said, we usually have to experiment with different medications and treatments to try to figure out what works best.

Take care,
April

ive been on cymbalta for treatment resistant depression ; did nothing for me. many ssri snri tca too. finally did ketamine infusions. first uro gyn dx m initially w a normal bladder; i was right there when he did cystoscopy; no hunners lesions ; no bleeding. he said 'see you hv a n ormal bladder'. and it looked normal to me. whatever this is, trust me its not normal. when i picked up my med records from his officethey said "ketamine induced interstitial cystitis". i went to 2nd uro gyn, she knew what to do she said: and scheduled the hospital OR for a 2nd cystoscopy undre hydro distension. my partner died within five wks of entering hospital during that time, i had no one to take me to second cystoscopy. i moved on to dr 3; she cath'd me ; that lasted 3 days till the bag broke and i had no others and she wldnt call bk, that is, not until she had me decath myself at home. horrible and scary. then she dismissed me w/ no verbal or written notice or reason why. pcp referred me to dr 4, who dx'd me w/ pn ... and ordered pn nerve blocks and pft, which i ws already doing pft.

if you hv any ideas, suggestions anything. i really need help, four drs. and i am still feeling like this? pelvic mri this thursday. finally. i'm worn down ; no sleep up 7+ x a night to pee; i cannot think straight anymore.... balance a ckbook, send out a card, it's all falling behind.

Hi Help,
I'm so so sorry to hear about all you've been through. It sounds really difficult. Have you tried ice and/or heat? I could not have survived (still couldn't) without that. For heat, I use a heating pad on high. I wear biking shorts with the pelvic floor cut out and that protects my legs from the heat. Sitz baths or just a hot bath are other ways to get heat. For ice, I used to put water in condoms and freeze them. Then I wrapped a wet paper towel around them and put them on a pad in my underwear. That allowed me to be mobile while icing. I'm glad you'll be getting an MRI on Thursday. Violet has the contact info for obtaining the protocol for MRIs that are designed to help see pn-related problems. You could send her a private message requesting it. It's protocol created by Dr. Hollis Potter in NYC. It might be useful to try to send that to the doctor who ordered the MRI so they can send to the clinic doing the MRI. Let us know what the MRI shows.

Take care,
April

helpmelord wrote: ↑Sun May 11, 2025 10:08 pm ive been on cymbalta for treatment resistant depression ; did nothing for me. many ssri snri tca too. finally did ketamine infusions. first uro gyn dx m initially w a normal bladder; i was right there when he did cystoscopy; no hunners lesions ; no bleeding. he said 'see you hv a n ormal bladder'. and it looked normal to me. whatever this is, trust me its not normal. when i picked up my med records from his officethey said "ketamine induced interstitial cystitis". i went to 2nd uro gyn, she knew what to do she said: and scheduled the hospital OR for a 2nd cystoscopy undre hydro distension. my partner died within five wks of entering hospital during that time, i had no one to take me to second cystoscopy. i moved on to dr 3; she cath'd me ; that lasted 3 days till the bag broke and i had no others and she wldnt call bk, that is, not until she had me decath myself at home. horrible and scary. then she dismissed me w/ no verbal or written notice or reason why. pcp referred me to dr 4, who dx'd me w/ pn ... and ordered pn nerve blocks and pft, which i ws already doing pft.

if you hv any ideas, suggestions anything. i really need help, four drs. and i am still feeling like this? pelvic mri this thursday. finally. i'm worn down ; no sleep up 7+ x a night to pee; i cannot think straight anymore.... balance a ckbook, send out a card, it's all falling behind.

Hello Help,

I would need to know a little more about your symptoms, history, and response to nerve blocks before having any ideas or suggestions on where you might go from here. Do you have any other symptoms (besides bladder) in the distribution area of the pudendal nerve? For an overview of typical PN symptoms you can go to this link on our website: https://www.pudendalhope.info/category/symptoms/

It sounds like one of your main symptoms is bladder related with urinary frequency, is that correct? Do you have any idea what might have triggered the symptoms in the first place? Any history of previous pelvic surgeries or injuries, etc.? The pudendal nerve innervates the external bladder sphincter so urinary frequency/discomfort and the feeling of needing to go often can be one of the symptoms. I remember I was getting up 6 or so times a night when I was going through the worst of PN. Was finally able to get some sleep after I started taking clonazepam and antidepressant medication which was helpful with the urinary symptoms.

You said one of the doctors ordered pudendal nerve blocks. Were you able to try those, and if so, what was your response to the blocks? Did you have even a few hours of relief or partial relief of your symptoms?

Any MRI results back yet? Did any doctors ever have you get an MRI of the lumbosacral area or the lumbosacral plexus? A pelvic MRI can be valuable in determining a diagnosis but it's also important to have those other areas checked as well. Often with PN/PNE, nothing shows up on MRI's but it's important to make sure there isn't something obvious that could be the cause.

When you have pelvic floor PT, has your PT ever done internal PT and pressed on the pudendal nerve to see if pressure on the nerve elicits pain? When they do pelvic floor PT, does it seem to ease the pain or does it cause a flare up in symptoms later that day or the following day?

I’ve asked a lot of questions here, but getting the right diagnosis can be key in finding the right treatment and finding the right doctor can be key in finding the right treatment, so I think it makes sense to continue looking for the right doctor. If you live in the US, you can check out the list of doctors we know of who treat PN. https://www.pudendalhope.info/united-states-physicians/
April mentioned Dr. Potter. Her contact info is on that list.

Wishing you the best as you figure this out.

Violet