THT- I've Been Diagnosed With Pudendal Neuralgia (A Pelvic Floor condition) - Elegantly Dressed and Stylish - Fashion Over 50
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THT- I’ve Been Diagnosed With Pudendal Neuralgia (A Pelvic Floor condition)

Hi friends,

For the past week or so I had been dealing with some familiar symptoms. I had Pudendal Neuralgia about 12 years ago and it has recurred.

As I am writing this, I am feeling “beside myself” for having this come back into my life.

What is Pudendal Neuralgia?

Pudendal neuralgia is long-term pelvic pain that originates from damage or irritation of the pudendal nerve – a main nerve in the pelvis. The pudendal nerve supplies areas including the: lower buttocks. READ MORE ABOUT IT HERE.

The only positive I can gleam is that I knew what it was straightaway, having to experience this pain before. Last time, I had no idea and didn’t know who to turn to. So weeks and months of going to various specialists became commonplace, without answers.

Last week my doctor wrote the diagnosis- Pudendal Neuralgia. It felt like it came out of nowhere. Things were going well with my EDS, and this has just shattered me. Not sure the cause, but with EDS I have chronic constipation ( due to Gastroperesis) and that can have a hand in it, if it put pressure on the nerve.

Whatever the cause, it has now appeared, and I am taking steps to help myself, but it is hard, certainly emotionally, as I feel I am starting at square one again

I am so disheartened, as we probably have to reschedule our trip that I have been looking forward to for years. See, with PN, the Pudendal Nerve is innervated throughout the pelvis, and is close to the sit-bones. I experience a burning nerve pain and cannot sit now for long.  I did keep my cushion, which is this nerve cushion, that can also be used for other things like back pain, sit bone pain, hemorrhoids, etc. The cushion allows you to put less pressure on the nerve. The last time I dealt with this condition, it took 1 year of pelvic floor therapy ( twice weekly) to feel better.

Just the other day I went with my husband in the car for 1 hour, with the cushion, and there was no way I was going to be able to sit 8 hours on a plane at this point.

What treatment did I use last time?

Twelve years ago, I was given a script for Pelvic Floor Physical Therapy. Well, at the time, I had never heard of such a thing,

The PT is trained as an expert in this specialized area. The work is done to loosen the pelvic floor where there may be adhesions, tight muscles, and nerve compression.  This is done internally.  I am not going to say that it is painless., but last time I encountered this, it took 1 year to diminish the symptoms and become fully active in life.

Pelvic floor PT is done for many conditions including bladder issues, prolapse, tight pelvic floor muscles causing sexual dysfunction, nerve related problems, such as mine.

Dry needling of the pelvic floor is done now, so this is another avenue I will take.

In addition to pelvic floor PT, I would use ice or heat, take baths, and take walks.

I am also now taking Gabapentin, which is a nerve pain medication.

Friday I must have made 15 calls and talked to answering machines the whole time. I will continue to make calls for appointments.

If conservative measures ( pt, medicine) doesn’t help, there are Pudenda nerve blocks that may be tried.

If you are having any pelvic pain, do see your doctor. They might be able to refer you to a specialist who can help.

I my need a week from the blog,, but may post on IG. I always need a distraction from pain, or else it is all I will think about.

talk soon

Jess

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33 Comments
  • debbiestyleslife.com
    Posted at 10:48h, 22 August Reply

    I’m so sorry to hear about your PD recurring, Jess. Prayers that the pain/discomfort will lessen very soon. Thankful that there are measures that you can take to help yourself. Take care of yourself.

  • Lucy Bertoldi
    Posted at 15:50h, 21 August Reply

    I’m so sad to hear this Jess- I hope the treatment you choose will make you recover painlessly and quickly. Sending you hugs xx

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  • Emma Peach
    Posted at 05:42h, 20 August Reply

    I’m really sorry to hear this Jess. I hope you find some relief soon and are able to still go on your trip.

    Emma xxx
    http://www.style-splash.com

  • Lovely
    Posted at 03:15h, 18 August Reply

    I’m so sorry to hear this. Sending you positive thoughts and hope you recover quickly this time.
    xoxo
    Lovely
    http://www.mynameislovely.com

  • Laura Bambrick
    Posted at 10:16h, 17 August Reply

    Oh Jess, I’m so very sorry you are dealing with this again. It must be so frustrating and disheartening. I will be keeping you in my thoughts and prayers and hope that you heal faster than last time!

  • Maureen
    Posted at 09:58h, 17 August Reply

    Oh Jess, I am sad that this is happening to you. I know it must be heartbreaking to cancel your trip. Sending you hugs and prayers that you feel better soon.

    Maureen

  • Marie-France
    Posted at 19:19h, 16 August Reply

    So sorry to hear you’re going through this Jess. I hope it gets resolved quickly. Sending you healing thoughts!!

  • Cat Coluccio
    Posted at 18:47h, 16 August Reply

    I have lived with chronic pelvic pain for over 15 years now and interestingly – no doctor has ever mentioned that condition to me, so I will be checking it out. I live on a cocktail of meds – including codeine and an antidepressant that helps with nerve pain. It’s debilitating on so many levels and affects every area of life – including travel like you said. Even as I write this, I am propped up on my bed as sitting on a regular chair is too painful.

    I’m sharing this though, not as a “woe is me” but to let you know that I fully get it. Chronic pelvic pain sucks and my heart goes out to you. Big hugs across the globe and hoping you are able to get on top of this flare up xxx

  • Rosemary Davis
    Posted at 18:28h, 16 August Reply

    So sorry you are being challenged once again with this ailment. I hope your recovery is quick and you are soon well once again.

    Take care❣️
    Rosemary
    http:www.DistinctlySouthernStyle.com

  • Nipa | Fashionipa
    Posted at 16:33h, 16 August Reply

    Jess, I’m sorry to hear that you’r in pain, and that you’ll have to postpone your trip. Sending hugs and positive vibes. Xo Nipa

  • Sally in St Paul
    Posted at 16:16h, 16 August Reply

    That’s very sad news, Jess. Wishing you the best!

  • Shelley Webb
    Posted at 15:32h, 16 August Reply

    I’m so sorry that you are going through all this! And how awful that you’ve had to cancel your vacation. I’m sure that’s disappointing for your husband, as well. I hope that you’ll be able to find some relief soon. {{{hugs}}}

  • Lizzie
    Posted at 14:09h, 16 August Reply

    I’m so sorry to hear this, Jess 🙁 You have been so supportive and encouraging through my health journey for the last few years. Knowing that you understood helped me out so much! You have such an supportive community here and I know that you are helping so many by sharing this. I’m just so sorry that you have to experience it. I really hope that you don’t have to reschedule your trip and I hope that the doctor is able to help. Sending you so many prayers for healing and comfort <3 Hope you feel better soon!!!

    Lizzie
    http://www.lizzieinlace.com

  • mireille
    Posted at 13:50h, 16 August Reply

    I am so sorry! I hope it won’t take as long as last time for you to find relief from the pain and I am sorry that you will have to cancel your trip. Praying for you!
    http://www.chezmireillefashiontravelmom.com

  • Cheryl Tucker
    Posted at 13:06h, 16 August Reply

    I am so sorry Jess! I hope you have success with your treatment and hopefully much quicker results this time.

    Peace!
    Cheryl

  • Alexandra
    Posted at 11:41h, 16 August Reply

    So sorry to hear this! I hope the therapies help. Thank you for sharing. I hadn’t heard of this before, now I have, and I appreciate it.

  • Kathy Franklin
    Posted at 10:42h, 16 August Reply

    Dear Jess,

    I am so sorry to hear that you are going through this pain. I am doubly sorry that it is disrupting your trip plans. I hope and pray that you are able to find relief soon!

    Hopefully, the gabapentin will help in the short term. I had to use it after an assault that severely sprained my ankle and caused an avulsion fracture. Apparently, the main nerve that runs down the top of the foot was injured and was giving me a weird squeezing, burning pain that would attack me whenever I changed the position of my foot. The gabapentin helped tremendously. Just know that it does cause drowsiness and mental fogginess.

    I know that you are a tough cookie and you will come out on the other side of this. We, your readers, are all pulling for you!

  • Di
    Posted at 10:40h, 16 August Reply

    Jess, so sorry to hear about your pain and discomfort. Sending healing energy your way. It sounds like you are fortunate to be in a good location with a lot of specialized medical professionals. Hope they can help you with a speedy recovery!

  • Michelle
    Posted at 10:35h, 16 August Reply

    Oh Jess, I am so sorry! I totally understand being so disheartened and disappointed. Our bodies can be such betrayers. I hope the gabapentin is giving you some relief.

    xoxo
    Michelle
    https://mybijoulifeonline.com

  • Ashley
    Posted at 10:20h, 16 August Reply

    Aw, Jess, I’m so sorry the PD is back. That really must be so disheartening and frustrating, especially as it derails your trip plans. I’m sending you good vibes and hoping you find some relief soon!

    -Ashley

  • jodie filogomo
    Posted at 10:12h, 16 August Reply

    Cancel your trip?? Oh, that would be awful Jess. I can see why you are so disheartened.
    Sending lots of hugs and love,
    XOOX
    Jodie

  • Mary
    Posted at 09:41h, 16 August Reply

    I’m so so sorry to hear what you are going through, Jess.
    Wishing you all the strength and spirit you need to get you through this.
    Much love
    Mary xxx.

  • Wendy
    Posted at 09:00h, 16 August Reply

    Oh, Jess, I’m so sorry for all of this, but especially for your trip.

    May I ask, what type of doctor diagnosis this? I’ve had butt pain (both sides) for years now. I always either sit on a cold-pillow or a heating pad (bought one for the car).

    It might not be the same thing, but yes, I sit too much. I saw that sitting can be a cause. Guilty as charged.

    I know what it’s like to be on the doctor-go-round: super disheartening.

    Hang with your babies, they’re amazing listeners and cuddlers.

    ♥♥♥, Wendy

  • Pamela
    Posted at 08:54h, 16 August Reply

    Dear Jess – I feel for you but fortunately you appear to have the best people around you and you’re all pulling together. I hope and pray for a speedy recovery.
    Pamela
    http://www.style-yourself-confident.com

  • Jill
    Posted at 07:50h, 16 August Reply

    I’m so sorry to hear this Jess. Sending you healing vibes and hope things improve soon.

    Jill – Doused in Pink

  • Shelbee on the Edge
    Posted at 07:33h, 16 August Reply

    Oh my gosh, Jess, I am so sorry that this is recurring after all these years. It sounds absolutely horrible. Sending you healing energy, my friend.

    Shelbee

  • Nancy
    Posted at 07:23h, 16 August Reply

    Gosh Jess, I am so sorry to red this. I can totally understand how you must feel and want to give you all the strenght that you need! That trip will wait, for better times, and they will come. Keep faith!

  • Fonda @Savvy Southern Chic
    Posted at 06:03h, 16 August Reply

    So sorry to hear this news. I’m praying you feel better soon.

  • Jennifer
    Posted at 05:47h, 16 August Reply

    I am so sorry to hear this Jess!

    Jennifer
    Curated by Jennifer

  • Angela Dean
    Posted at 04:16h, 16 August Reply

    Poor you, I hope your treatment clears this bout of pain up quicker than last time. You are armed with your previous information so you can address the situation better than before.

  • Katie
    Posted at 02:43h, 16 August Reply

    So sorry to hear about this diagnosis and that you had to cancel your trip. I am glad you are seeking out the necessary treatment and I hope things improve.

  • Neti
    Posted at 02:00h, 16 August Reply

    So so Sorry to hear this Jess. I know you are a fighter and you will win this one too.
    XO
    http://www.mtoomuch.com

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