Vulvodynia? Intimate - sorry. - Fibromyalgia Acti...

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Vulvodynia? Intimate - sorry.

Spirit profile image
10 Replies

Recently a lady posted about Vulvodynia and that she had this as well as FMS.

Vulvo was one of the first life affecting symptoms I had of FMS and I'm wondering if ladies would be willing to share (on here or privately) how they have coped with it. I ask because it is likely to cause a breach in my marriage if I can't begin to get a handle on it and pain meds aren't working on that area of me at all.

Thanks for reading.

Loving Hugs

Spirit

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Spirit profile image
Spirit
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10 Replies
tofty profile image
tofty

thats about the only symptom i dont have spirit its difficult enough to have a relationship with fm as is it i really do feel sorry for u.im not sure wot to advise but have u visited yr local nurse at yr surgery or googled that question take care xx

Butterfly54 profile image
Butterfly54

Hi Spirit if what you are asking about is pain in that tender area then no I don`t but I have got constant itchy burning feeling on the outside,so I know it`s not thrush or vaginal dryness but whatever it is it`s embarresing as sometime I really want to scratch,all the best hun Butterfly54

66Amanda66 profile image
66Amanda66

I also have the itchy burning problem on the outside, i have had canesten and other creams off the doctor but it doesnt go away, i wonder what it is ? im a bit releived to see others have it as well.

I think it might be due to medication, but am not sure ?

loulou71 profile image
loulou71

Hi all, i'm also new to this site an i think it is amazing....

I was diagnosed with fm in 2003 and have also suffered with itchin down below,

I went to the doctor's and was referred to the hospital and it turns out the itch is caused by Lichen Sclerosis,( skin disease) oh the joys... a steroid cream is what you need also quit with the nice smelling shower creams in favour of Aquous cream :-( not very nice but does ease the itch, i also have vitiligo and thyroid problems with is a nightmare if i'm not sleepin i'm scratching or in so much pain i can't even get out of bed.... I WANT MY LIFE BACK!!

mummymoomin profile image
mummymoomin in reply toloulou71

Hi loulou71. I too have LS, vitiligo and underactive thyroid! I try to only use the steriod cream when things are really bad and was going to speak to the pharmacist today to see if Lanacane/Vagisil would be better as im worried about the steriod making my skin thin. I would love to know how many more auto-immune diseases I am going to get before my GP will send me to an andocrinologist. I also suffer with terrible facial hair but put this down to being overweight. Ho hum - tis good to know im not alone and im glad I found this website :)

nadine1974 profile image
nadine1974

i dissolve aqueous cream in the bath and this really helps x

Spirit profile image
Spirit

Jules - thanks for this. I haven't had a normal sex life for almost 3 years. I had a surgical procedure last year to remove the affected are as they said it was also L.Sclerosis (as you have Loulou). Didn't help a bit and (unsurprisingly) left me with pain round the scar site from the stitches that has never gone.

I'm very grateful for the tips about daily 'care' and will try those.

I feel like I'm being ripped open between the vagina and anus - is this the kind of thing that you are meaning?

Is funny when some of my girlfriends say they "lie there and think of England" and I think that's be grateful to be able to do even that *sigh*. It's a cruel condition isn't it? :(

Thanks for your ideas and sympathies everyone

Spirit x x x

LindseyMid profile image
LindseyMid

This organisation has information that may be of help:

vulvalpainsociety.org/vps/i...

The kind of drug that is used for Fibro pain or neuropathic pain can be used for Vulval pain as well.

Mazza profile image
Mazza

Take a look at this Wikipedia link.

Cut and past it into your browser.

en.wikipedia.org/wiki/Liche...

Lichen Sclerosus is linked to Thyroid disease and autoimmune disease. Hashimotos Thyroiditus (Thyroid disease) is an autoimmune disease.

FM is linked to Thyroid Disease, Thyroid disease, is linked to Lichen Sclerosus, which is linked to autoimmune disease.

Coincidence? I don't think so.

I have done my own research for many years due to my own thyroid problems and being within "normal reference ranges" with many many symptoms of Hypothyroidism.

I take T4/T3 now and am better on it, but it took me years to get a diagnosis of subclinical hypothyroidism ()more than 10 years).

Anyone with FM symptoms i.e. Hypothyroid like symptoms with blood test within the "normal reference range" should get tested for Hashimoto's Thyroiditus i.e have test for autoimmune antibodies. These antibodies can take years to show up in blood tests but all the while they are affecting the function of the Thyroid gland.

Those with FM should research "peripheral cellular resistance to thyroid hormones". As well as Deiodinase 2 mutations. A mutation in the Deiodinase 2 will mean that T4 to T3 is impaired. There is a recent study to prove this possibility. Print the study and take it to your GP.

Don't accept your FM diagnosis on the basis that your bloods are "normal". Ask for a trial of T4. Read up on the studies. Don't give up. Keep exploring researching, and pushing your GP. If your GP is unhelpful, find one that is more open minded. i.e. not scared witless by the British Medical Association or the Royal Society of Physicians who are ignoring the evidence in front of them that the bloods don't always give a true picture of Thyroid status. Make sure you get a full Thyroid function test....FT4, FT3, TSH, anti-TPO and TgAb.

Look at this website for more info..

stopthethyroidmadness.com/h...

Read, read, read. The more you read the more you learn to identify the good evidence from the bad. There is so much new evidence emerging. New medical evidence can take 15 years to trickle down to the patient. Some doctors are better than others at keeping up to date with and listening to the evidence and are not just in it for their careers.

Good luck and Bon courage! (and make no mistake, you will need courage to face the docs. The bad ones will try to tell you you know nothing and can't possibly understand anything you read. Don't let them do that to you.)

Look at websites where Doctors and researchers put their names and reputations on the line. Avoid sites selling you coconut oil etc. Look at JAMA,

Dr Lowe, and the very well managed thyroid advocacy sites.

I could go on ...sorry... hope this has helped. It's taken me years to get to a point where I will give advice in this area because I had to feel sure that what I say is founded on solid facts and not just clutching at threads of hope.

Thyroid disfunction is very prevalent and on the increase.

ichelle profile image
ichelle

HIya yes i have this problem as well, i have been going to the docs for about 2 years with it, im only just putting the two together myself. My doctors are useless, fortunately ive a good specailist. My gp has had me go for quite a few invassive tests, im sure gp's think symptoms are all made up. I have a kind and loving partner who is very patient, im sure this helps but its quite depressing as ive got the menopause to enjoy next xxx

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