Hello: I'm new to the group. I'm a... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Hello

Football6-7-2021 profile image
21 Replies

I'm new to the group. I'm a man and i have had pelvic floor pain and stomach issues since a prostate biopsy in 6/2021.

I hear to support, receive support and advise others of my journey which I'm still on.

thank you for the opportunity to allow me to introduce myself to you all.

21 Replies
jr188 profile image
jr188

Hi! Hopefully I can help as well. Sorry about your pelvic pain. Are you going to see a pelvic floor physical therapist. I find this to be the cornerstone of treatment. I start Sept 12th

Football6-7-2021 profile image
Football6-7-2021 in reply to jr188

thanks for your reply.

i tried it but then the PT specialist had me stop as she said i was in too much pain for her to treat me as she was making the pain worse. i have since gone to pelvic floor specialist dr and pain management doctor the suppository 2x per day of 5MG valium and 50 Mg gabapentin has been very helpful for pain management. i go back to physical therapy on 9/16 so hoping for a great results. in the meantime, i'm dealing with IBS which occurred at same time my pelvic floor started to hurt. i think they are connected i have to go get endoscopy and colonoscopy on 9/8.

jr188 profile image
jr188 in reply to Football6-7-2021

I get it! I have ibs-c and gastroperesis. It's got to get those tests. It will give you more information. Good luck with the pt when you start. It's so important to get the right PT for you.

Desperateforrelief profile image
Desperateforrelief in reply to jr188

Have you been checked for pudendal/obturator neuralgia. They do a nerve block to confirm or deny. It does not have to be that nerve specifically, nerves downstream from it (closer to the perineum) can be helped by this. I was pos for both pudendal neuralgia and obturator neuralgia. I use the suppositories you mentioned for flares, which are rare now. I had the interstim which helped me greatly (at least 50% reduction in pain). After 2 years it stopped helping as much. A new therapy came to my area (it had been out about 5 yrs at that time, but it is still very hard to find, slowly gaining popularity) called pulsed radiofrequency ablation. It gave me 100% pain releif the first 3 months. After that first one, the next ones didn't work quite as well, but still at least a 80-90% relief of pain. I am currently getting them every three months. They are covered by my insurance. I get botox shots too, for very tight uneven pelvic floor muscles, from mesh complications - all 4 muscle groups on each side of the pelvic floor have scarring from getting the mesh out. I am now at the point where I may not need them anymore, since starting the pulsed radiofrequency ablation. This is such horrible pain. I am sorry you're going through it!

Desperateforrelief profile image
Desperateforrelief in reply to Desperateforrelief

I meant I am getting pulsed radiofrequency ablation every 6 months. Botox is every 3 months.

Football6-7-2021 profile image
Football6-7-2021 in reply to Desperateforrelief

yes, unfortunately that nerve block did not work. They also did ganglion nerve L5-S1 and I go on 9/29 for the cluneal nerve block. Still searching for relief. My pain relief has come from the suppositories but I just had a colonoscopy and endoscopy today and my rectum is killing me. 😩

Desperateforrelief profile image
Desperateforrelief in reply to Football6-7-2021

Not even a short amount of relief from PN nerve block? The block only lasted me maybe 20 mins, diagnostic. The reason I ask is I get horrible rectum pain too.

Desperateforrelief profile image
Desperateforrelief in reply to Desperateforrelief

Also, I have found B& O's are the only thing that completely knock out that pain when it gets to 8-10. B& O stands for belladonna and opium, although getting harder to get as of late.

Desperateforrelief profile image
Desperateforrelief in reply to Football6-7-2021

Another question, did they do the block with fluoroscopy? I had a block that failes, it wasn't until I had one guided where they saw the nerve clearly that I got a good diagnosis.

Football6-7-2021 profile image
Football6-7-2021 in reply to Desperateforrelief

when i had PN and Ganglion at same time i felt a little relief but came back in a day, then they did separate and it increased pain in the perineum area felt swollen. i'm seeing a different pain management and pelvic floor specialist now. i will ask.

Desperateforrelief profile image
Desperateforrelief in reply to Football6-7-2021

if you felt some relief that is a positive for PN. You can get flares of pain from the blocks. I have had several of these. Doctors make a difference. I would either see if they could do a repeat with fluorescopy and x-ray (see nerve so much clearer). Usually they do 3 here for confirmation. I have been getting radiofrequency ablation of the nerve and it has been a miracle for me. My pain was in sexual area, not by nerve.

Football6-7-2021 profile image
Football6-7-2021 in reply to Desperateforrelief

thank you for the reply it is very helpful information. so far i've had PN and Ganglion at same time (limited 1 day relief), ganglion (no impact), PN (unfavorable increase pain and swollen feeling), ganglion (unfavorable increase in pain and swollen feeling), L5-S1 (positive reduced pain).

Desperateforrelief profile image
Desperateforrelief in reply to Football6-7-2021

That sounds like a flare. I've had several. It is dependent on if they hit the nerve directly. They are supposed to put the lidocaine/steroid next to the nerve, close not in. Sometimes they nick it. My flares generally lasted 10 days - 2 weeks. Absolutely miserable! A full days relief is a big thing. I got anywhere from 15 mins to 4 hours. But it cleared it for that time. I could feel it relieve the pain when they did it. Doesn’t last. Plus steroids are not great for us. With radiofrequency ablation, it definitely hurts while they do it - short lived. But it sets off every pain that I feel. That is how they know they got the right spot. Occasionally you will hear of people's legs going numb from these. That is because the sciatic nerve is close and it can get numbed at the same time. It freaked my husband out because he thought I would lose the use of my leg. It was temporary. It had worn off a few hours later. Pulsed radiofrequency ablation does not kill the nerve, it heats it up and resets it of sorts. They really don’t know why it works, but for some people it takes for 2 years. Also with nerves, time is your friend. They grow back very slowly. They can heal eventually. So I think some of the healing is from my body's own healing properties. Of course some get permanent damage as well. I know a person who had hers removed (she didn't know it, but she sure feels it - very important nerve. They found it missing when they went to do the diagnostic block). I wish you the best and hope you find your answer!!

Football6-7-2021 profile image
Football6-7-2021 in reply to Desperateforrelief

thank you. Very helpful as I continue on my journey. Pain doctor wants me to test a spinal cord stimulator. Have you had that ?

Desperateforrelief profile image
Desperateforrelief in reply to Football6-7-2021

Yes, it worked very well for the first 2 years and relieved at least 50% of my pain. After that it stopped working. No idea as to why. I had a nurse tell me she had seen that clinically. I recommend you read as many studies, medical documents on this as you can find. Being hurt by a medical product has caused me to be very skeptical of dictors and procedures. I have found the mire I learned about my anatomy, condition etc. the more help good doctors were able to provide. I consider doctors good if they listen, they answer every question and don't push me into something. Very few. I am also in the US. I have found a great pain doctor in Birmingham, AL. He has helped me the most since this issue started in 2009. I also get radiofrequency ablation to my ganglion impar as well. I used to be limited to sitting for 15-30 mins and extreme pain. I can now sit anywhere as long as I want. Not all is well as I have some permanent damage done.

I think you will find as you go along that it is not just one part that is effected with pelvic pain. Everything in the pelvis is interconnected. So my tailbone was not a problem until around 2017. But over time the tight muscles in the pelvic floor pulled unevenly on it until it was in severe pain. I trued PT several times from the get go. In the beginning it made pain much worse. It has been a process for sure. Thank you for your prayers. I will say a prayer for you too. I would not wish this on my worst enemy. I have had nights where I just cried through the whole thing. Pain was intractable. I am very thankful I am not there now! Hang in there. There is help. You have to look for it.

Desperateforrelief profile image
Desperateforrelief in reply to Desperateforrelief

I noticed there are several words where I hit i instead of o. FYI

Football6-7-2021 profile image
Football6-7-2021 in reply to Desperateforrelief

do you have stomach or IBS-C problems as well that add to your pelvic discomfort.

Football6-7-2021 profile image
Football6-7-2021 in reply to Desperateforrelief

I pray for you and all those in pain. This is definitely the most pain I ever experienced. So I feel for you and pray that the pain ends.

Football6-7-2021 profile image
Football6-7-2021

Thank you for your support. God bless

Desperateforrelief profile image
Desperateforrelief

AIhave stomach issues. I have never been diagnosed with IBS. I think one thing effects the others. Did you have it before you were hurt?

Football6-7-2021 profile image
Football6-7-2021

I’ve never had stomach issues prior. I could eat anything and then the prostate biopsy’s triggered pelvic floor rectum pain severe as well as sitting issues you mentioned. I use a special cushion it really helps. Let me know if you want website. Thanks for being there.

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