Update on my pelvic pain: Hi All, I... - Pelvic Pain Suppo...

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Update on my pelvic pain

Andilynn
Andilynn
13 Replies

Hi All,

I wrote recently about my struggle with pelvic (rectal mostly) pain. I had a colonoscopy that showed nothing and had some relief with compounded rectal suppositories prescribed by the GI doctor. I took them for the ten days and had to refill it because it was back after a day. Thursday I saw my neurologist. He believes I have a pudendal nerve issue and has ordered an MRI. I’m waiting to hear if my insurance will approve it, but Im doubtful. The doctor said it’s either a spinal issue or pudendal nerve. Interestingly, he said that people with PN feel best when they lay on their stomachs. So, when I got home, I tried it and - I did not feel the rectal discomfort in that position. Has anyone else been told that? It hurt my lower back to lay that way, but I was just testing the position for a couple minutes. The neurologist said the suppositories won’t help much because the colon wall is very thick and the medicine can’t get through. He prescribed me a 5% lidocaine cream to rub near my tailbone 4 times a day. It’s not doing much, but I’m using it. He has me scheduled for trigger injections in early September. I’m worried about that because I’ve never had relief from any before for other things, but I’m desperate and hoping it helps with this. He’ll have the MRI results prior to the appointment.

My best to all for a pain free weekend,

Andi

13 Replies
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kalecolbe12

I have seen a few people have gotten them and they seem to work for some and not others....have you thought about Botox?I think we have spoken about it before but can't remember...I am still on Flexeril and doing pt but mine is mainly in rectum too so I am gonna try the compounded cream and then perhaps botox

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Cardinal

From your posts, it seems like you have pain in quite a few areas, not just rectal, right? Did your doctor feel trigger points in your muscles? If it is pain from trigger points, it could be myofascial pain syndrome, and the tight muscles are kind of squeezing on your pudendal nerve. I've had trigger point injections from a few doctors and they only worked with one of the doctors because he knew what he was doing. Most don't; that's the problem. The part of the injection that works is the needle, itself. But some doctors actually think it is the saline solution and lidocaine in the injection that is the helper. Which obviously isnt correct, since saline is just salt water and lidocaine only lasts a few hours. That's why I prefer getting dry needling, since it's the needle that releases the knot. But I've never had dry needling that close to the PN. I had a trigger point injection close and it was the worst pain. I'm fine having the needles in most of my botox, but not anywhere near the "crack."

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Andilynn
Andilynn
in reply to Cardinal

My discomfort is pretty much just rectal up to the tailbone at this point. I’ve been walking between one and three miles every day and see a definite improvement in the situation. It’s not gone, but it’s better. It’s worse after a BM and more uncomfortable walking and standing than sitting. I talked with my oncologist about it at my six month check up today and she’s ordering CT scans, just in case. I’m a lymphoma patient in remission, so she wants to investigate that and a couple other things going on just to be safe.

I ordered the book Ending Female Pain, by Isa Herrera, in hopes of learning something helpful.

I truly appreciate all your posts and recommendations and wish you all healing thoughts.

~ Andi

1 like
Reply
ollHF

Pudendal neuralgia is just what doctors diagnose you with because they don’t know how to treat it. You have cpps I have it too. It’s muscle tension in the lower half of your body. Look up dct David McCoid he will help you. Purchase the course and take time and do it. Contact David he had this issue for 14 years and is cured. People in the group are beating this. I’m personally still working and have a long road but it takes time...

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swarke22

I too have all these symptoms and I’ve even had the pudendal nerve decompressed. I have read the book ending female pain about pelvic floor dysfunction by Isa Herrera and I am convinced that all these pain are due to dysfunction. I believe she is in New York. I am taking her online class. I hope this helps and will report back in a few months time.

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Andilynn
Andilynn
in reply to swarke22

Thanks so much for your reply! Please keep us updated. I will read the book you mentioned.

Reply
Adele1
Adele1
in reply to swarke22

Please post if the class helps you. Thanks! I hope you get pain relief.

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Pelviccrusader

First of all, put a pillow under your pelvis area when you lie on your stomach-It hurts because your lower back is going into extension which can strain ligaments and tendons. Yes, stomach sleeping is much better for us PN folks-still figuring out how to not destroy my neck though doing it.

Is the scheduled MRI a neurography which can visualize nerves? This is what you want but most places can’t do it.

I am also doing DCT-early stages but it seems to help.

What exactly is he injecting his into trigger points?

I told you about class 4 laser before-it helps but I seem to be getting further help from a transdermal cream containing vitamin b complex and vitamins c and e. After putting on the cream I apply heat for 20 minutes.

You might get more help from the community if you provided more details. What makes the numbness better or worse? What activities brought it on? Etc.

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Reply
Andilynn

You’re right about the neck pain while laying on the belly! I will try the pillow under the hips.

I believe the MRI will be a regular one. He’s checking the lower spine which we already know has some issues.

I’m happy to hear that you’re seeing some good results with the DCT. I’ve seen other positive posts about it. Not sure what the neurologist plans to do the trigger injections with...I assumed (shouldn’t do that) it’s lidocaine and cortisone. I’ll ask before he starts shooting in September. I’m feeling better than a month ago, and hoping by September that I’ll feel better enough to cancel the injections.

Best,

Andi

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AdeleS586

I was diagnosed with pudendal neuralgia in December of 2015.

The only thing that worked for me was seeing a skilled pelvic floor physical therapist. My first round of pelvic floor therapy was in January of 2016 it helped me.

The biggest thing that helped me at the time was the fact that I had a job where I was on my feet all the time and I was not putting pressure on the pudendal nerve by sitting.

Sitting is what caused my condition in the first place or at least aggravated it. ( I first had my symptoms in August of 2015 after I took a desk job and was sitting for 8 hours a day.)

Fast forward to 2018 when I was offered a job with a company I've been trying to get into for years. Training started in June of 2018 and continued through September. My pudendal neuralgia symptoms flared up, because I had to sit in a chair for training.

I went back to my Physical Medicine doctor (PM&R), and requested that she write me a referral for pelvic floor therapy again.

This time around, I went to a different therapist, as my other therapist had left the University of Michigan. Allegra my therapist had a completely different approach for the previous therapist and treated me in ways the other one had not. Her approach was completely different and very effective.

I also received an ultrasound-guided injection of Lidocaine and cortisone, which didn't really do any good because my issue was no longer pain but numbness from my tailbone up to my c-section scar in the front.

I am happy to say that with my new job they provided me with a sit-stand desk as an option which I was able to get thanks to a note written by my PMR doctor.

I am now mostly symptom-free and can go a couple of days without doing my physical therapy at home and not worry about backsliding and having full-blown symptoms.

I would recommend pelvic floor physical therapy because it doesn't involve needles or surgery, and what do you have to lose?

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kalecolbe12

May I ask what kind of things your new physical therapist did ?I am currently in physical therapy for pelvic floor dysfunction and my therapist does hip and spine mobilization which I really noticed a difference she does pudendal nerve glides to release the nerve and trigger point release but I'm always looking to see what other people's therapist do

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AdeleS586

Here is what I came up with after thinking about it. I was released several months ago from pelvic floor PT. My first round was in 2016, my second in November 2018 to April 2019.

Me: Self internal trigger point releases with Therawand. Self stretching. Kegels.

Therapist: Massage scar tissue from c-section.

Visceral manipulations.

Worked to align my pelvis.

Craniosacral therapy including CV4 still points and intraoral releases.

Intravaginal electrical stimulation to restore sensation. (Electrical Stimulation: (25 minutes, unattended): Intravaginal electrical stimulation, 100Hz, continuous, performed to restore sensation following reduced neurovascular impingement.)

**CV4: The procedure of CV4 appears to be simple; the patient lays down, and the therapist holds a squamous part of the occipital bone with its lateral angles and manipulates the cranium into an extension. The therapist holds the extension of the cranium and waits for a motionless state. After the appearance of the cranial pulse, the therapist may end the procedure.****

After intraoral release, I could feel a difference in my abdominal area.

I hope this helps

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Andilynn

I am encouraged by your post and hope you continue to do well!

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