Rectal Burning, Rectal Spasms, Bladder Spasms, Burning Labia,numbness,sacral pain, and yes the dreaded Pudendal Pain

[Susan1-2]

I have had it all. A miserable two years. Finally after the third Pudendal Nerve Block I have some real relief. I didn't want to make a post too soon as maybe I was dreaming. I can have a normal bowel movement without feeling like the door is closed. I am sure many of you understand that feeling. I still have pain so I will have to continue with nerve blocks. I use Baclofen especially closer to late afternoon when the pain escalates. This cuts down the spasm pain. I take supplements: acidophilus, fish oil pills, vitamin, magnesium, peppermint oil, enzymes, and L.Glutamine. I drink a glass of Pinot Noir after dinner to take the edge off and colace before bed. I drink a lot of water during the day and basically follow the SCD diet. I only use Braggs Ginger Sesame salad dressing and started drinking dandelion tea to detox my liver. It seems like many of us have a combination of IBS and Pudendal Neuralgia/ Nerve Entrapment. I feel like my body was poisoned.

I have been practicing meditation, Fieldenkraus Yoga, walking a mile a day, and swimming.

A couple times a day I lay down on my back and put my legs up on a chair for a half hour. This takes the pressure off the pelvis. I only sit to drive and use a cushion with cut out in the middle when I do. When I work I use a kneeling chair but infrequently. I don't stand in one place too long. I go up the staircase or incline backwards. I try not to bend and use a grabber device to do laundry or pick up stuff off the floor.

Prior to my decline I was very active running, hiking, skiing, yoga, jump roping, biking, and more. It's hard to go from such an active lifestyle to feeling like I am 90. Hopefully, my physiotherapist and pain clinic doctor can help me continue to get better. I wish that for all of you as well. I appreciate and learn from all your posts. Hopefully, I can help someone with my story as well. Good luck everyone. I am praying for all of you!

[Ladydidi]

Hi Susan,

That's really wonderful news! Please keep us posted. I know what you mean about not posting too soon. Where are you located? I've been getting perennial nerve blocks for the past several years every eight weeks and I'm thinking they are not helping one bit. I've asked my doctor for a prudendal nerve block but she says I do not have pudendal neuralgia so it won't help. However in the last six months I've had severe rectal burning especially prior to and during pooping, even if only a little bit comes out. I also get a sharp pain at this side, 5 o'clock position in the vagina during the same time. I can't understand why these doctors can't just do a prudendal nerve block and see if it works I have been a patient for nine years!!! Anyway, thx for your post!!

I'll keep good thoughts for you'

[Susan1-2 in reply to Ladydidi]

I am in the USA, Boston area. I get my nerve blocks at Newton/ Wellsley Pain Clinic and see the Pelvic Pain Clinic at Mass General in Boston. I also met someone at the pain clinic and we are trying to help each other through this horrific nightmare. I am generally a happy person and then this happened. Before the nerve blocks I would kick the wall and swear all the time. But now I can see a possibility of getting better. This isnt in our heads. It is real pain!!!! Maybe we have dumb luck!!

[Cardinal]

I have most of that too (minus the bladder problems and #2 problems). Have a lot of rectal pain but tons of burning pain around the coccyx. My medicine helps 50% which is great, and xanax is a good muscle relaxer, but I still have almost 50% of the pain, which sucks. Still, I used to also have a ton of pudendal pain lateral to the vagina, and most of that is gone now thanks to my physiotherapist.

[Wonderer in reply to Cardinal]

Cardinal,

What did your physiotherapist do to change your pudendal pain? Thank you so much!

[Cardinal in reply to Wonderer]

Just the basic internal trigger point release. So feeling for tightness and trigger points in each pelvic floor muscle and pressing on those areas for about 30 seconds or so until the muscle loosened up.

[Susan1-2 in reply to Cardinal]

Do you remember falling ? Could it be the rectal branches of the pudendal nerve damaged. I had a consultation with a neurosurgeon and I thought my rectal branches were damaged. Makes sense if you are having rectal pain it would be the rectal branches of the pudendal nerve. Well, when laying on my stomach I realize no it's not the rectal branches. My problem is the perineal branches.

Finally, I had a Telsa 3 MRI that revealed scarring around the alcocks canal. I will have surgery Nov 28 to take care of neuromas.

Look at Utube Dr. Dellon Pudendal Nerve. This is a 3 D look at the pelvis and pudendal Nerve.

This provides a good understanding of where the Nerves are. Read Dr Dellons books on line . (Www.dellon.com) I did a lot of cross referencing on line to understand everything.

[Hidden]

Fab news, what a great fighting spirit you have... I'm feeling positive that I will get better or be able to live with the daily pain xx

[Wonderer]

Susan 1 -2, you are not alone! I was active too before the crap hit the fan! I'm getting ready to start physical therapy of the pelvic floor. I'm hoping this round, it will actually do something. The pudendal block I received did absolutely nothing for me. I've also had Botox in my pelvic floor muscles about 4 weeks ago. Im still in pain, and the bills keep rolling in. This is dibilitating in so many ways. I miss (the old me). Over a year and a half of my life has been pain, everyday. I hope your physical therapy works for you! Please keep us updated on your progress! Thank you!

[ljlmax]

Hi Susan,

Hooray for your positive spirit! I work very hard on smiling through my journey. I know the feeling of speaking too soon as well. Very happy the block is working for you. I had 6 and had no relief. Yet I have some damage in sacrum due to scar tissue after surgery. I did test positive to PNE in 2010. Your Rectal issues do concern me. After 4 years of living with major Rectal pain where I had no life, I told neurologist something was really wrong; for months they kept telling me it was my meds. I had such pain expelling a bowel movement. It was horrific. After really standing up and being my own advocate, he finally sent me to a colon Rectal doc and I had an anal mamotry test which I failed. If you catch early enough, you can get biofeedback using suppositories. For me, it was too late. I had to have a colostomy. Not trying to scare anyone... Just trying to educate! I can function better yet still struggling with nerve pain. Doc did warn me. This condition is so difficult. I am now considering a SCS. Just went for a consult in NYC

[Rosepetal60 in reply to ljlmax]

Just read your interesting posting reply and I'm puzzled by you saying you tested positive for PNE . What is this test please ?

[Pkkpd5]

Oh man I'm scared.

[Susan1-2]

Today, I feel positive the third nerve block helped to release the tension in the left side of my rectum. My physiotherapist released tension vaginally and rectally today giving me more relief in my right side. Try not to give up on the physiotherapy. I am like all of you . Day to day we try new ways to figure this out and off and on we want to give up but we can't. One technique I am trying to aid in my recovery is including family members in keeping the calm at home. I tried to come up with something pleasurable to concentrate on. I put lollipops in my car, in my husbands car, in my bedroom, and in the living area and kitchen. When anyone in the house starts to get frustrated over silly things or negativity arises the code word is lollipops. Meaning "stop" refocus to positive attitude. I think my husband and I said lollipops ten times today. Our kids were laughing. The reminder of lollipops throughout the house makes me happy. I think as long as you have something pleasurable in your house it is a good meditation technique. I will probably fill my pockets with lollipops when I go to work and suck on one when things bother me. Then I will stay relaxed. Also, I ordered a pebble mat for Reflexology. I will put it in my laundry room or hallway less traveled and use it ten minutes a day. Check it out on line. You could probably collect pebbles at the beach and make your own area to walk on. After physiotherapy today I realized I have dropped foot off and on because this son of gun is wrecking one of my legs. So , I started wearing an ankle weight tonight on the weaker side. Tomorrow, I will go to the gym in search of weights I can lift with my feet without having to sit down. I am going to beat this "you know what". I won't swear anymore. Let's pull together and try to come up with solutions!!!!🍭🍭🍭🍭🍭

[ncoplin]

I have rectal and bladder spasms as well. I take Bentyl (an anti-spasmodic) along with small amounts of suboxone for pain. Are the spasms caused by the PN entrapment?

[Susan1-2]

The doctor thinks Pudendal Neuralgia and maybe partial entrapment.

[Susan1-2 in reply to Susan1-2]

Hi, I am back. The third nerve block didn't last. Today, I had Radiofrequency Nerve Ablation. I felt my Pain Clinic doctor was spot on with the procedure. She is a God send. It reached two areas that are the most irritated. Hopefully it can tame the nerves. My physiotherapist released some tension on my right side a day before the procedure. I don't know what I would do without my physiotherapist. She is an angel. I also started seeing a new chiropractor this week and I asked him to do ART therapy on my obturator Internus. He thought it was my gluteus muscle going up to the s1/L5 with the nerve. I have knots in the gluteus muscles below the hip. He gave me an exercise of making a fist with one hand pushing on vertebrae along belt line holding wrist with other hand and arching backwards. 10 repetitions 4times a day. We will see if this helps release the nerves. I tried lying down and doing piriformis stretches. That was a Big mistake . I ended up with a stab in the rectum afterwords. Streangthening the muscles internally put me in bed for three days with level 9 pain. That is off the table. I will go for vaginal injections next month. At what point do you say these nerves are just stuck and are not moving? How many years in before you make the decision to have surgery? How do you decide what surgeon to ask for help? I am in the USA. I thought about making a decision to lie in bed for a month. I have a busy life with work and kids. Is it even possible?it is costing me a mortgage payment every month with copays for insurance for physiotherapist, chiropractors, doctors visits and uncovered insurance costs, massage therapy,Fieldenkrsais therapy sessions. I am an active 49 year old. I ski, figure skate, run, practice yoga, hike, bike with my kids, and swim. Now I walk a mile a day and walk up the staircase backwards and do not sit or bend.