Author Topic: Vulvodynia (vulval pain)  (Read 1517 times)

twilite

  • Full Member
  • ***
  • Posts: 141
Vulvodynia (vulval pain)
« on: March 22, 2021, 03:10:07 AM »
Anyone experience this kind of pain? And what did you have to do to cure it?

I have been in pain off and on for over a month and it seems to be getting worse. I do have an appointment with a specialist a urogynecologist on April 1st and I don't know if I'm going to last that long. I have been using vagicain cream and anbesol off and on to help with the pain iand t's not very long lasting relief.

I heard a TENS unit might help with this type of pain, idk...

So if anyone has any suggestions or any type of treatment that they use for it, if you could let me know before my appointment I'd really appreciate it.

I am in misery almost 24 hours a day😩. It wakes me up in the middle of the night all throughout the night so I'm just exhausted from lack of sleep and pain.🥱😵

Thanks
65 Years Old - Diagnosed in 2008 - Secondary Sjogren' s, HypoThyroid, Fibromyalgia, osteoporosis, RA, , Pre-syncope, Hypermobility syndrome, Arthralgia, Insomnia, neuropathoy, dry mouth, eyes, low BP & Vit D, Citrulline Antibody, orthostatic hypotension, ulcer, glaucoma, brain fog, and depression

eye2dry

  • Hero Member
  • *****
  • Posts: 661
  • Sjogrens, RA, hypothyroid
Re: Vulvodynia (vulval pain)
« Reply #1 on: March 23, 2021, 08:32:07 AM »
Hello.

I am sorry you have this condition,  were you diagnosed by  your primary doctor. Does heat help? Is it better with walking?

I had something similar to this. Back 20 years ago, which would make me in my 40s. My gynecologist diagnosed me with pelvic congestion. It was most painful with sitting , standing and laying down...got better with walking and moving. I would try to sleep at night with a heating pad folded and placed between my thighs, it gave some relief.

They could not tell me why I had it. I was given I think an anxiety medication...to help me cope with it. I believe I was also prescribed birth control pills.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

meirish

  • Sr. Member
  • ****
  • Posts: 340
Re: Vulvodynia (vulval pain)
« Reply #2 on: March 24, 2021, 05:47:41 PM »
Sorry to hear that you are suffering from this. Really can be miserable I bet. This is another issue that would benefit from a visit to a neurologist. WE have had people on here before who have had this and generally it is from inflammation in nerves in that area.

The one nerve they mention is the puedental nerve...don't know if I spelled that right. Here is hoping that you can get some relief. Good luck. meirish

jazzlover

  • Hero Member
  • *****
  • Posts: 3168
Re: Vulvodynia (vulval pain)
« Reply #3 on: March 25, 2021, 08:49:58 PM »
Consider looking at your diet. Big correlation between that and oxalates.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

bluegardenia

  • Hero Member
  • *****
  • Posts: 684
Re: Vulvodynia (vulval pain)
« Reply #4 on: April 05, 2021, 03:15:00 PM »
i had vulvodynia and had terrible years but it can be cured. after I have seen many gynecologist I found one who has a specialization on this . he gave me a cream with hormones and I made tens. after a few months it went away completely. I still use the hormone cream that was changed in the years. when I feel pain is coming back I start tens because I bought the little machine to do it by myself so I do not need to go to the doctor to do it
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

SjoDry

  • Hero Member
  • *****
  • Posts: 944
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: Vulvodynia (vulval pain)
« Reply #5 on: April 24, 2021, 06:38:01 AM »
Hi Blue,

I have this pelvic floor dysfunction also. I also went to a UroGynecologist who gave me the hormone cream, but I did not hear anything about using a tens unit. I had pt recommended but never did that as other issues came up. Do you use the tens unit internally or externally?

Thanks.
Ciao.
SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

bluegardenia

  • Hero Member
  • *****
  • Posts: 684
Re: Vulvodynia (vulval pain)
« Reply #6 on: April 26, 2021, 05:02:32 PM »
internally but somebody must teach you how to use it. you should find a doctor who makes the first couple of applications and then you could buy it and use it  by yourself because the thing has different grades. I am sorry I cannot explain better , I am Italian but I  tell you that my life changed.before tens I could not even sit or walk or use panties and during the night the pain was awful.i remember that sometimes I was so desperate and i dissolved my cortisone pills in mineral water and put there with cotton pad. it worked for some hours
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

jazzlover

  • Hero Member
  • *****
  • Posts: 3168
Re: Vulvodynia (vulval pain)
« Reply #7 on: May 01, 2021, 04:59:01 PM »
I brought this from a site I found .. just Google ...

I can't bring the link because they are selling things on this site. (as with most sites!)

"If a green detox and ?being healthy? gives you vaginal or bladder symptoms, you may want to take a closer look at oxalates. Oxalates can be an irritant to delicate soft tissue when not eliminated from our bodies efficiently.

Note on vulvodynia and oxalates: there is very little to no evidence that oxalates cause or contribute to vulvodynia.

Oxalates can be an irritant and for some of you a low-oxalate diet may provide a lot or a little of relief, but it is unlikely that oxalates have caused your vulvodynia.

It is worth examining oxalates if you suspect you have an intolerance but don?t pin your hopes for curing vulvodynia on oxalates.

It is more worthwhile doing a full elimination diet (see best hospital guidelines) to remove additives, preservatives, artificial colours, amines and salicylates (to name a few) then slowly and carefully reintroduce them, instead of picking on oxalates."

If you go to "Trying Low Oxalates" on Facebook, you will find different information. Good information.
« Last Edit: May 01, 2021, 05:01:22 PM by jazzlover »
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease