1. < Chronic Pain

vulvodynia pain

Posted by healthybon @healthybon, Dec 3, 2023

does anyone have vulvodynia? I got it a few months ago and no one knows why. it's excruciating pain on the outside part of the vagina. I also have burning mouth syndrome. fibromyalgia and costochondritis. I am at the end of my rope from pain. my life has become small, and all I do is try to get out of pain 24/7. I can take tramadol, but am so afraid of addiction and dependence..
This is all very discouraging and I just can't handle it much longer.

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leneandrade | @leneandrade | Dec 9, 2023
In reply to @harley22 "I too am tired of all the different pain I get lately. I get shooting pains..." + (show)
@harley22

I too am tired of all the different pain I get lately.
I get shooting pains in my vaginal area also.
Also in my rectal area, go figure!
I never know where or when it’s coming!
I can be fine one minute, then get a sharp stabbing pain, somewhere in my body.
It can last short time, or hours, even after I take something for it.

Jump to this post

It's probably pelvic floor dysfunction, I have it and it is one of those things that goes along with fibromyalgia. These muscles get tense for no reason just like the other ones in my body, it comes and goes.

REPLY
1 reply
celia16 | @celia16 | Dec 9, 2023
In reply to @leneandrade "It's probably pelvic floor dysfunction, I have it and it is one of those things that..." + (show)
@leneandrade

It's probably pelvic floor dysfunction, I have it and it is one of those things that goes along with fibromyalgia. These muscles get tense for no reason just like the other ones in my body, it comes and goes.

Jump to this post

Do you know how they test for that? Can a doctor confirm with pelvic exam?

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 9, 2023

Hi @healthybon, I'm sorry you're in such discomfort. Having widespread pain isn't easy in general let alone the addition of vaginal pain. Been there, doing that. Something to consider is Central Sensitization Syndrome (CSS) which is a chronic pain condition that can affect permanent changes in the central nervous system whereas the brain receives louder messages causing false signals almost like fight or flight. CSS is an umbrella syndrome to many conditions such as fibromyalgia and neuropathy, and can affect sensory, muscles, nerves, joints via hypersensitivity. See more on CSS here:

An Overview of Central Sensitivities Syndrome-
- https://www.verywellhealth.com/central-sensitivity-syndromes-716160

You mention having fibromyalgia and prior covid. Some people end up with hypersensitivity from long covid and I'm wondering if your newest vulvodynia isn't part of that. What do you think?

REPLY
2 replies
celia16 | @celia16 | Dec 9, 2023
In reply to @rwinney "Hi @healthybon, I'm sorry you're in such discomfort. Having widespread pain isn't easy in general let..." + (show)
@rwinney

Hi @healthybon, I'm sorry you're in such discomfort. Having widespread pain isn't easy in general let alone the addition of vaginal pain. Been there, doing that. Something to consider is Central Sensitization Syndrome (CSS) which is a chronic pain condition that can affect permanent changes in the central nervous system whereas the brain receives louder messages causing false signals almost like fight or flight. CSS is an umbrella syndrome to many conditions such as fibromyalgia and neuropathy, and can affect sensory, muscles, nerves, joints via hypersensitivity. See more on CSS here:

An Overview of Central Sensitivities Syndrome-
- https://www.verywellhealth.com/central-sensitivity-syndromes-716160

You mention having fibromyalgia and prior covid. Some people end up with hypersensitivity from long covid and I'm wondering if your newest vulvodynia isn't part of that. What do you think?

Jump to this post

Omg! Thank you for that link. It’s quite informative. I will check it out. Perhaps, that’s why I was prescribed an antidepressant. It would have been nice it it was explained to me.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 9, 2023
In reply to @celia16 "Omg! Thank you for that link. It’s quite informative. I will check it out. Perhaps, that’s..." + (show)
@celia16

Omg! Thank you for that link. It’s quite informative. I will check it out. Perhaps, that’s why I was prescribed an antidepressant. It would have been nice it it was explained to me.

Jump to this post

You're very welcome I'm glad the link was helpful . To be honest most doctors don't understand central pain sensitization or take the time to learn about it. Mostly I have found that doctors stay in their Lane and prescribe for what their specialty is without thinking outside of the box. Mayo Clinic has a pain Rehabilitation Center:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Also you might want to check out this video by Dr Christopher Sletten of the Jacksonville Florida Mayo Clinic PRC:


He breaks down Central sensitization syndrome and offers not only the science behind it but helps bring validation to some of the unexplainable.

I hope you find this helpful, too. Will you let me know if the video resonates with you? What are your next steps in management of your symptoms?

REPLY
1 reply
celia16 | @celia16 | Dec 9, 2023
In reply to @rwinney "You're very welcome I'm glad the link was helpful . To be honest most doctors don't..." + (show)
@rwinney

You're very welcome I'm glad the link was helpful . To be honest most doctors don't understand central pain sensitization or take the time to learn about it. Mostly I have found that doctors stay in their Lane and prescribe for what their specialty is without thinking outside of the box. Mayo Clinic has a pain Rehabilitation Center:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Also you might want to check out this video by Dr Christopher Sletten of the Jacksonville Florida Mayo Clinic PRC:


He breaks down Central sensitization syndrome and offers not only the science behind it but helps bring validation to some of the unexplainable.

I hope you find this helpful, too. Will you let me know if the video resonates with you? What are your next steps in management of your symptoms?

Jump to this post

It’s late, but I’ll watch it tomorrow and respond. My dad has Conversion Disorder, so I am somewhat familiar with Functional disorders.

REPLY
susanfalcon52 | @susanfalcon52 | Dec 10, 2023
In reply to @healthybon "susan, thanks for your response. I'm getting ready for pelvic floor exercises...I do use the cream..." + (show)
@healthybon

susan, thanks for your response. I'm getting ready for pelvic floor exercises...I do use the cream now. How long did it take for the burning not to return?

Jump to this post

The estrogen cream worked fast. I use that 3-4 times a week. In between, I use coconut oil. If I do this and keep up with the pelvic floor exercises, I will be okay.

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tinkerbelle | @tinkerbelle | Dec 10, 2023

I take Tramadol for my pelvic/vaginal pain and i swear by it. No side effects. Take up to 3 per day 50mg.

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leneandrade | @leneandrade | Dec 11, 2023
In reply to @celia16 "Do you know how they test for that? Can a doctor confirm with pelvic exam?" + (show)
@celia16

Do you know how they test for that? Can a doctor confirm with pelvic exam?

Jump to this post

Yes, you need to see a urogynecologist.

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1 reply
healthybon | @healthybon | Dec 11, 2023
In reply to @rwinney "Hi @healthybon, I'm sorry you're in such discomfort. Having widespread pain isn't easy in general let..." + (show)
@rwinney

Hi @healthybon, I'm sorry you're in such discomfort. Having widespread pain isn't easy in general let alone the addition of vaginal pain. Been there, doing that. Something to consider is Central Sensitization Syndrome (CSS) which is a chronic pain condition that can affect permanent changes in the central nervous system whereas the brain receives louder messages causing false signals almost like fight or flight. CSS is an umbrella syndrome to many conditions such as fibromyalgia and neuropathy, and can affect sensory, muscles, nerves, joints via hypersensitivity. See more on CSS here:

An Overview of Central Sensitivities Syndrome-
- https://www.verywellhealth.com/central-sensitivity-syndromes-716160

You mention having fibromyalgia and prior covid. Some people end up with hypersensitivity from long covid and I'm wondering if your newest vulvodynia isn't part of that. What do you think?

Jump to this post

hi rwinny
i'm thinking also, maybe the vulvodynia is resulting from covid and/or the vacines. I guess i will never know.
I went to many doctors today about this, and also for the burning mouth issues I have. I am being tested for oral herpes and some other things. somehow, i think there is a connection between the mouth and vulva burning pain. i want to look more into the css and will watch what you sent me. it's all such a mystery.

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