More symptoms when lying on my back?

[manifestwill89]

Hi, I'm noticing that I have more symptoms when I lie on my back. I have numbness moreso than pain (but still have pain and PGAD). When I get up from lying down on my back, I notice that I'm really numb in the vulva. Does anyone know why this could be? My physical therapist said that my tailbone sticks out too much. What is around the tailbone that would cause pressure on the PN?

PLEASE help me, anyone. I'm only 24 and the thought of no sexual pleasure for the rest of my life is overwhelming...

[Violet M]

Well, your tailbone could impinge on nerves coming out of the spine but it seems like you would have more than just PN-type symptoms if that were happening. For some people pudendal neuralgia is positional. I know in my case PGAD was worse when lying down which made it very difficult to get to sleep. I think it is too soon to consign yourself to no pleasure because you do have some treatment options. What are your physicians recommending for you?

Violet

[manifestwill89]

I do. I get tingling, numbness and pain in my feet (heels) and toes when I sit down, lie on my back, or just put pressure on the tailbone area. My vulva also gets very numb in all three situations. The numbness has been going on for over five months now and just getting worse. My orgasms are weak and I literally can't get physically aroused. My vulva is a lot smaller and the skin is getting baggy because of lack of blood flow.

My PT says my PF muscles are really tight and I just need to relax them, and she's having me do meditations and a few stretching exercises and breathing but nothing aggressive like what I feel I need. No biofeedback or anything, and I'm paying out of pocket for her. Very depressed.

[ethanisaac]

I had almost all of your symptoms and than some and I am now on gabapentin and feel so much better. I also go to a chiropractor and physio for my pelvic floor. If you have any questions I can help.

Kellie

[Violet M]

Gaby, is your PT doing any myofascial releaseof the vaginal walls? Honestly, I hate it when they say you just need to learn to relax. If you have a nerve entrapment it is literally impossible to relax because your nerve is sending the wrong signals. If you aren't happy with the treatment regimen it is fair to question the PT about what you can expect for treatment in upcoming sessions and if you aren't satisfied maybe switching to a new therapist.

Violet

[manifestwill89]

Kellie, thank you for your input! A lot of the time I feel so alone in this. I just started taking 1600mg of Gabapentin daily so I'm excited to see if it works! Good to hear that it has helped you so much.

Violet, no, she hasn't done myofascial release. What is that? She mostly works on massaging my muscles and thoracic spine now, but how is one hour of that going to help? Wouldn't it just undo itself during my day? And she charges $140 an hour so it's really hurting me financially. She suggested that I buy a vibrator to massage the vaginal walls (which hurt in every area she touches). She's just not doing anything for me that I couldn't do on my own. I've seen her for almost two months now with a worsening of symptoms still.

The ONLY thing that has helped is climbing, hiking, or other rigorous aerobic activity. But it doesn't permanently fix the problem, and as I'm getting worse, these things don't help as much anymore. Really interested in a chiropractor because my right leg is shorter than the left and I feel grinding in my left hip when I walk.

[Violet M]

Myofascial release of the pelvic floor is similar massage of the pelvic floor to release the tension in the muscles. Usually the PT does that via the vagina or rectum using a finger. It didn't help me because I had a nerve entrapment but it does help some people who have tense muscles.

If you are having pain in your hip you should probably be checked for labral tears because they can be associated with pelvic pain. You can search Lernica's posts to learn more about that topic. Have you had an MRI yet to check your hips for labral tears and to check the nerve roots coming out of your spine in the sacral area? If your tailbone (or anything else) is impinging on nerves it might show on the MRI. Damage to spinal nerves can cause the symptoms you are describing so it's important to rule out spinal nerve impingements.

Also, sacroiliac joint dysfunction and pelvic misalignment can cause pudendal neuralgia symptoms so your PT should be evaluating you for those.

I know at the time, exercise can feel great, but be careful because I know from experience that heavy exercise can wreak havoc with the pelvis.

Take care,

Violet