Patient Comments: Vaginal Pain (Vulvodynia) - Symptoms


What were your symptoms associated with vulvodynia? Submit Your Comment

Comment from: Carol aj, 55-64 Female (Patient) Published: September 04

My main symptoms of vulvodynia are stinging, soreness in my vagina and vulva, and sometimes stomach churning. Seems to feels worse when I sit down. I have had 3 lots of antibiotics. First swab showed a skin infection, I had antibiotics, they made no difference, and I was put on another week’s course. Second swab revealed the same. The 3rd swab, the doctor put me on another antibiotic, and next swab said it had cleared! I am trying Canesten cream, not sure if it will make any difference. Feeling fed up, looking online myself, came across this vulvodynia, I am sure this is it.

Comment from: Tam, 55-64 Female (Patient) Published: June 25

This is the worst attack of vulvodynia I’ve ever had. It started in my early thirties and felt like a bladder infection but tests were always negative. I had to wait it out. Years ago I was put on a hormone cream which seemed to help some. I still don’t know if I’ve been diagnosed correctly but I don’t know how much longer I can take this. It’s debilitating and terrible. It feels like a constant throbbing ache. It went away for a fee days and came right back. It starts quickly and stops quickly.

Comment from: LisaG, 55-64 Female (Patient) Published: June 13

I am 62, and well past menopause. I started having extremely painful sex a few years ago. It was a deep ache that lasted hours afterward. Estrogen cream solved that problem. When I was young, I never had cramps with my period, but a dull ache of the labia, especially when standing for any length of time. About a year ago, that pain returned on and off. Now vulvodynia is constant, and worse when standing. It burns around the vaginal opening when I urinate. I feel raw. I want to cry.

Comment from: Carrie, 35-44 Female (Patient) Published: May 31

My urologist diagnosed me several years ago with chronic bladder pain syndrome (interstitial cystitis). I would have flare ups for weeks at up at a time and until this past year it has finally spread into my vaginal area. Around the time of my menstrual cycle it would feel like someone had poured acid into my female area. I didn’t even want to go the bathroom it burned so bad. I was taking Uribel to help with spasms and two painkillers. Sex has finally gotten painful and nothing helps my vulvodynia, it’s depressing.

Comment from: Hope , 45-54 Female (Patient) Published: February 12

I have constant vaginal pain. Nothing is helping my vulvodynia. I am trying emu oil at the moment to hopefully help in some way. I am in pain every day from morning till night. It doesn’t go away and is affecting my life. Seriously don’t want to live like this anymore. I hope they find a cure.

Comment from: Cath, 55-64 Female (Patient) Published: November 03

I have recurrent pain that I thought was urinary tract infections (UTIs), but I now know I have an oxalate problem. It could be diet related or something your body produces because of mineral deficiencies. After reading all your symptoms I don't think mine is vulvodynia. But I would recommend looking into the connection between vulvodynia and over-production or lack of elimination of oxalates.

Comment from: Come on, 25-34 Female (Patient) Published: October 22

Vulvar pain can be referred pain from a chronic urinary tract infection (UTI)/bladder infection. Testing has been proven to be inaccurate so just because the tests is clear, does not mean it really is. Some women find their vulvodynia cleared when they began treatment for chronic UTI.

Comment from: D speaks, 65-74 Female (Patient) Published: November 18

I have interstitial cystitis (IC) and some of these women describing bladder and vaginal pain (vulvodynia) with no bacteria present in urine, sound like I did years ago when I was finally diagnosed with IC. My urologist put me on Elavil which only blocks the pain.

Comment from: Simone, 55-64 Female (Patient) Published: April 16

I get 2 distinct types of pain with vulvodynia. The first is very similar to period pain, i.e., abdominal and down my thighs. The second only involves the vaginal area. However, both are present during the night after urination and seem to be connected to diet. I am on a gluten/yeast/sugar free diet, but sometimes I lapse! I can no longer eat Anzac biscuits, as this results in the first type of pain. Last night I had 2 glasses of champagne, which provoked the second pain. It"s not bad enough to take painkillers, but stops me sleeping. The pain eases during the day. Having sex does not cause either pain. So, back to the strict diet for me!

Comment from: smallen14, 19-24 Female (Patient) Published: January 08

I have been suffering from intense burning and itching around my vaginal opening and in the area just before my anus. The pain has been off and on for at least 2 years. I've been to numerous doctors and gynecologists who keep telling me I have a bacterial infection, UTI (urinal tract infection), yeast infection and every STD possible. I've tried antibiotics, yeast cream, cortisone, even Neosporin but nothing helped. Warm oatmeal baths provide temporary relief. I can't make love to my husband because of the pain. I can't shave or wax because of the pain. I wake up in the middle of the night in tears because the burning is so intense. I will try this primrose oil and hope for relief.


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Comment from: chyydak, 65-74 Female (Patient) Published: October 31

I had suffered from what seemed like a urinary tract infection. But tests came back negative except sometimes when they did a culture an infection showed not just a regular urine test. After seeing many urologists with no answer I saw an urogynocologist and was diagnosed with interstitial cystitis. I finally found relief through a non-acidic diet and medication. Now I am suffering from vulvodynia and am working with my gynecologist. It started with a yeast infection and we are still diagnosing. As she suggested, I have found using a TENS machine all day above pubic area has helped.

Comment from: My daughters 23, 19-24 Female (Caregiver) Published: May 28

My daughter is 23 and these are exactly the symptoms of vulvodynia she woke up with this morning. We are at an emergency brain right now and doctors don’t have a clue of what is going on. I'm concerned because she is young and all I have read is really discouraging and sad. I don’t know what to do or how to help her.

Comment from: Evee, 35-44 Female (Patient) Published: October 04

I started thinking I had a yeast infection after having my period. Doctor prescribed medicines which didn’t work for my vulvodynia. Itching was persistent. I went in to see the doctor. No yeast infection, and he gave me creams. Didn’t work. I saw a different gynecologist who gave me different creams. Still not working. I don’t see a specialist for another month. It’s already been 3 months since this started. I’m taking a crazy amount of naproxen and Zyrtec. I’m getting desperate. All I do is cry. Nothing helps.

Comment from: Diane, 55-64 Female (Patient) Published: December 06

I have been suffering from vulvodynia almost 2 years now. I have tried hormone creams, topical creams, oils etc. I am miserable! Something may help a day or two, then stops. I spend 90 percent of my time in pain.

Comment from: Jacky, Female (Patient) Published: August 20

Around the age of 6 or 7, I started waking up in the middle of the night with a sharp, piercing pain in the vaginal area. It was awful. The family doctor could find no cause. Now, at the age of 65 I've started experiencing burning, occasional sharp pains again. I have a history of bladder and yeast infections. I notice it gets worse after walking for extended times, sitting in the car for 2-3 hour drives. I am in a very anxious/depressive mental state and now this is driving me crazy! I wondered also if 'stress' could contribute to it. So relieved to know I'm not alone.

Comment from: Missy Mitch, 55-64 Female (Patient) Published: October 18

I suffer from this condition and due to the fact that I also have had a lot of UTIs (urinary tract infections) in the past, I was confusing this with a UTI for a long time. It is so much like a UTI except that the medications for a UTI do not work on this! I notice I get this most often after sex with my husband when we do not take the time to properly use a good lubricant. That is very important for many women of my age group. This is an extremely painful problem and I hope to find out more about it and how to remedy the pain.

Comment from: mredhen, 65-74 Female (Patient) Published: August 26

My vulvodynia started as what seemed like a bladder infection. The most severe pain was upon the urine hitting the vaginal wall and the vulval area. I was tested four times in three weeks for a UTI but I did not ever show a positive urine test. I saw my Gynecologist and he felt the cause was due to thinning of the vaginal tissues due to age and lack of hormones. He placed me on a hormone vaginal cream. I am at my wits end as it seems that although I have continued the hormone therapy the pain is more severe than ever. What do I do now? I spoke to the doctor and he said it might take longer, but should the sensitivity be worsened by the therapy meant to help? Anyone have a similar experience. I am 66 and had a Hysterectomy in 1984 due to dysmenorrhea. I have never experience anything as painful. I want to cry each time I have to pee!


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