Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Which anti seizure medication? Thanks.

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@jsindc

Hello I think I have pudendal neuralgia. I was at Mayo clinic in the hospital for 11 days dealing with colorectal and liver surgery. I was in a very hard bed with the foam mattresses. I kept telling them my back was hurting. They gave me muscle relaxant. 5 or 6 days later I could feel the bed affecting my ability to sit and I worried this wasn't good. By the 5-6 day the gynecologist came bcs I had a UTI. I told them my vagina area was all numb and towards buttocks. And mentioned it to the nurse. Nothing was done. Then 2 days before I'm leaving a nurse not assigned to me that I saw passing in the hall/ had helped me before said to ne you'll sleep better now. I said I don't think so because the bed is so uncomfortable. She said I can fix that and put a machine on the bed that puffed up the mattress. They stuck a pillow under it because it was rattling into the bed. 2 days before i leave and this was a problem 5 days or less into my hospital stay. I was upset because it's like why wasn't this provided earlier. Or put in a different bed because I saw some rooms with real mattresses. The doctor who was in training and would come see me just gave me the muscle relaxant. Anyways I hate that I'm now dealing with this horrid pain. I live in a state where it's difficult to get care. Nobody knows anything except basic stuff. The cancer surgery isn't bothering me much it's this horrible pain in vag/buttocks numbness/pain in my side. I was smushed on my side in that hospital bed and now have excruciating pain on my right side under my ribcage cage and down my side. That is horrid as well. And it's not like its going away any time soon because it's been almost 4 weeks. Thanks Mayo Clinic for making me worse off than when i came in. I can't find anyone to deal with to help me here in HI the cesspool of healthcare. Plus, I'm put of leave from work. Now I have to go out and find someone to help me. An added bonus/more time off work when I'm in LWOP to my chemo treatment. I can't even get into a urogynecologist. Everything is delayed bcs it requires referrals so you have to wait a month to get into see one doctor who then gives you a referral but nothing stating urgency so you have to wait another 3 months for them. I don't like what went on in the hospital. Mayo clinic has me in more worse shape tgen when I went in. Surgery I guess successful but this other stuff. I don't think it should have happened. And since ce I live out of state they don't help you. Your left to deal with stuff on your own in place where healthcare system is s$%@!!!

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Experienced the same ailments, but from a different medical center also recently discovered that the antibiotic: FDA updates warnings for fluoroquinolone antibiotics, which I have been perscribed in a couple of different forms may cause the same conditions you described. I have just notified the Doctor who perscribed the medication of what the FDA has to say about the severe side affects from taking that antibiotic. I just hope the possible nerve and other tissue damage are not permanent.

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@kenc

Experienced the same ailments, but from a different medical center also recently discovered that the antibiotic: FDA updates warnings for fluoroquinolone antibiotics, which I have been perscribed in a couple of different forms may cause the same conditions you described. I have just notified the Doctor who perscribed the medication of what the FDA has to say about the severe side affects from taking that antibiotic. I just hope the possible nerve and other tissue damage are not permanent.

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Hello kenc, Thank you for the info. Appreciate it.

Jennifer

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This seems to be common condition afer colorectal surgery. I have consulted countless doctors of various specialities with limited or no results. More than doctor has told me there is nothing that can be done.

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@jsindc

Hello I think I have pudendal neuralgia. I was at Mayo clinic in the hospital for 11 days dealing with colorectal and liver surgery. I was in a very hard bed with the foam mattresses. I kept telling them my back was hurting. They gave me muscle relaxant. 5 or 6 days later I could feel the bed affecting my ability to sit and I worried this wasn't good. By the 5-6 day the gynecologist came bcs I had a UTI. I told them my vagina area was all numb and towards buttocks. And mentioned it to the nurse. Nothing was done. Then 2 days before I'm leaving a nurse not assigned to me that I saw passing in the hall/ had helped me before said to ne you'll sleep better now. I said I don't think so because the bed is so uncomfortable. She said I can fix that and put a machine on the bed that puffed up the mattress. They stuck a pillow under it because it was rattling into the bed. 2 days before i leave and this was a problem 5 days or less into my hospital stay. I was upset because it's like why wasn't this provided earlier. Or put in a different bed because I saw some rooms with real mattresses. The doctor who was in training and would come see me just gave me the muscle relaxant. Anyways I hate that I'm now dealing with this horrid pain. I live in a state where it's difficult to get care. Nobody knows anything except basic stuff. The cancer surgery isn't bothering me much it's this horrible pain in vag/buttocks numbness/pain in my side. I was smushed on my side in that hospital bed and now have excruciating pain on my right side under my ribcage cage and down my side. That is horrid as well. And it's not like its going away any time soon because it's been almost 4 weeks. Thanks Mayo Clinic for making me worse off than when i came in. I can't find anyone to deal with to help me here in HI the cesspool of healthcare. Plus, I'm put of leave from work. Now I have to go out and find someone to help me. An added bonus/more time off work when I'm in LWOP to my chemo treatment. I can't even get into a urogynecologist. Everything is delayed bcs it requires referrals so you have to wait a month to get into see one doctor who then gives you a referral but nothing stating urgency so you have to wait another 3 months for them. I don't like what went on in the hospital. Mayo clinic has me in more worse shape tgen when I went in. Surgery I guess successful but this other stuff. I don't think it should have happened. And since ce I live out of state they don't help you. Your left to deal with stuff on your own in place where healthcare system is s$%@!!!

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So sorry to hear about your horrible experience with the bed. I had something similar when I was transferred to a rehab center that had only one kind of mattress. It didn’t feel like it was blown up at all, and I felt like I was lying on the metal infrastructure of the bed. I had just had a two level fusion in my lumbar spine, and I was really concerned it might end up doing some damage. When I couldn’t get any help, even a change in mattress, I signed myself out AMA because I had a new bed at home and lived around the corner from the facility. It was a horrible experience but at least it didn’t leave me with any sequelae.

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@merlek2a

So sorry to hear about your horrible experience with the bed. I had something similar when I was transferred to a rehab center that had only one kind of mattress. It didn’t feel like it was blown up at all, and I felt like I was lying on the metal infrastructure of the bed. I had just had a two level fusion in my lumbar spine, and I was really concerned it might end up doing some damage. When I couldn’t get any help, even a change in mattress, I signed myself out AMA because I had a new bed at home and lived around the corner from the facility. It was a horrible experience but at least it didn’t leave me with any sequelae.

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Oh my gosh! Thanks fkr sharing. That sounds horrendous. Much worse than my thing. I'm sorry you had to go through that. Glad u were able to check yourself out.

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@colleenyoung

@jsindc, I'm sorry to hear that you are living with such pain and having to take additional time off work because of it.
I encourage you to share your story with the Office of Patient Experience. I'm not sure if they can help, but they should know about the poor bed.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

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Thank you Coleen. I took your suggestion. I wasn't sure who to call.

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Can you recommend the Dr and hospital where you had surgery. I’m ready to take the next step, as I’ve tried all conservative approaches. I live in California but I’m able to travel to find the best surgeon for pudental nerve entrapment/pudental neuralgia. Thank you in advance. Wendy

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I had this monster for 14 years. What worked finally was an anti-seizure medicine for an unrelated health problem. Topamax it was. My pelvic doc mentioned a year later that she had heard of this. Makes sense - a spasm. Try this first, please. Ask your doctor.

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@mikaylar

I had this monster for 14 years. What worked finally was an anti-seizure medicine for an unrelated health problem. Topamax it was. My pelvic doc mentioned a year later that she had heard of this. Makes sense - a spasm. Try this first, please. Ask your doctor.

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Thank you so much for this suggestion. How long did it take before it worked? Also, do you need to stay on it. Did you ever see a neurosurgeon or other about surgery? Thank you, can I call you?
wendy hahn 402 680-2856

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