Pudendal Neuralgia : Hi my name is... - Pelvic Pain Suppo...

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Pudendal Neuralgia

Pumita77
Pumita77

Hi my name is Pumita and I have been diagnosed with Pudendal Neuralgia or pudendal nerve entrapment. I was missed diagnosed for about 1year, finally they got the correct diagnosis. I have been suffering with an awful pain that doesn’t allow me to work or socialiase. I feel trapped in my pain day and night. I have a Botox injection in my pelvis area almost 5 weeks ago with physiotherapist stretching in the vagina area and so far no difference in pain. I feel no relief so far. I wonder if anyone out there has been tried with Botox injection with any improvement and if so,how long would take into start to work?

Thanks

19 Replies
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Hi

How do they make diagnosis?

Pumita77
Pumita77 in reply to introuble

By Symptoms. I have few surgeries in the past. I had a fissure and they did two surgeries to fix it but neither of them worked then I had a Botox injection and after one year of pain finally was fixed but I continued with pain on my back side then started to have pain in my vagina. They found a cyst that was removed but the pain increased. I have done a colonoscopy and all looks very clear.

I have a referral to do an special MRI for see nerves but my specialist doesn’t want me to do it yet as it’s just in case this Botox treatment works otherwise I will have to do another surgery to liberate the entrapped nerve. Apparently the recovery after this surgery is very long and brings some problems that he doesn’t want to talk about it yet.

Konagirl60
Konagirl60 in reply to Pumita77

Where do you live? I have had successful decompression surgery. I can help you.

Pumita77
Pumita77 in reply to Konagirl60

Hi Konagirl. I have been with pudendal entrapment for about 2 years now. I’m in excruciating pain day and night. I’m taking Tramadol and sleeping pills to get through the days. You mentioned about decompression surgery. I am with physio stretching in combination with Botox injection but I haven’t feel any changes yet. I hope I can get some information from your decompression surgery that you mentioned before that helped you. I’m in agony every single day. I sometimes feel like I don’t want to continue fighting. I cry every day. It’s not worth living this way.

I have a daughter and she is my only family here in Australia and I can’t leave her alone. Otherwise I would choose to go.

Thanks Konagirl

Konagirl60
Konagirl60 in reply to Pumita77

Nothing will help you if the nerve is stuck to ligaments....only surgery will help. Where do you live?

Pumita77
Pumita77 in reply to Konagirl60

I live in Sydney, Australia

21Tara
21Tara in reply to Konagirl60

What is decompression surgery? Does it help with entrapment? I am in the US and had nerve damage from a laproscopic myomectomy. Have been to every doctor around the bend... no relief, no answers. Blocks don't do anything....

Hidden
Hidden in reply to Pumita77

Hi, Where did your specialist suggest you could go to get the MRI to see the nerves? Mine says that an MRI can't see the nerves. I'm so frustrated. They just keep saying it's caused by my back.

Pumita77
Pumita77 in reply to Hidden

I will suggest you to go to see Dr Jason Chow at WHRIA. He is an specialist in Pudendal Neuralgia. He is a Gynaecologist. He can guide you. But he doesn’t like to rush you. He goes step by step. ThIs is a special MRI. That can see nerves and it’s done in Sydney. I will let you know exactly the place later. I have to find my referral in my papers.

Pumita77
Pumita77 in reply to Pumita77

Ok I ve got the phone number and the addresse of this MRI.

53 Palmerston road Hornsby NSW

Ph:(02) 95802755. I-MED

Hidden
Hidden in reply to Pumita77

Thank you

Konagirl60
Konagirl60 in reply to Pumita77

Thank you for helping her.

anne77
anne77 in reply to Hidden

I went to John Hopkins in Baltimore, MD to have a Tesla MRI, which is supposed to be even better than an MRN. Although it showed a alabral tear in my hip, an old hamstring injury and a few other issues, it did NOT show nerves(: I knew that going into it, but I thought it was worth finding ANYTHING at this point! Waiting to get an opinion next month from an Orthopedic Specialist to determine whether or not it is possibly causing PN chronic pain????

Hi there have you tried pregabalin and amitriptyline they are a good combination for nerve pain. its the only thing that's has worked for me , trust me I have been given everything going but nothing else worked

Pumita77
Pumita77 in reply to stenosis49

Hi Stenosis. Yes I tried Amitriptyline with Tegretol but not with pregabalin. I will ask my doctor about this combination. Thanks for your help.

your welcome hope you find relief soon. just to let you know it takes a while for the pregabalin to work as you know its not immediate relief . wish you the best. p.s please let me know how you get on thanks

Pumita77
Pumita77 in reply to stenosis49

Thanks so much. I let you know how I go. I will make an appointment with my GP and I will mention about this medicine.

All the best for you as we well 😊

I had Botox injections to the pelvic floor 5 weeks ago and sadly so far it has resulted in much worse pain than before I had it done. Severe flare-ups. I’m hoping I will feel better soon. You are not alone.

I did years ago. It helped a little for about three months then the pain came back.

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