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Vulvodynia Anyone?

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Posted 30 March 2010 - 06:40 PM

Ok Ladies,

I was diagnosed with celiac in August 09. September I had a large fibroid removed from my uterus. My doctor thinks surgery may have tipped off the vulvodynia. In some ways, I've had vulvodynia-like symptoms for about a decade but it for sure got worse once I went gluten-free and had surgery.

Since the oh so fun symptoms started I have eliminated a lot of foods from my diet and nothing has gotten better. I started taking imipramine about 1.5 months ago and haven't seen any improvements. Granted I wasn't at 40-50mg for that long but nothing good has happened.

At my recent doc appt I asked if there was anything else I could be doing, should be doing, someone I could talk to, etc. and she said, "Nope, I think you've got it all covered"...hmmmm....so I started looking online for more info and found the low-oxalate diet.

Has anyone tried this? I don't know what to eat. I feel like every list I find is different which is what happened with the interstitial cystitis diet.

Does anyone have a good, trustworthy link? I have no idea what I'm doing but I'm determined to figure something out! I am so stinking hungry it's driving me nuts. Any help would be appreciated :)
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Posted 02 April 2010 - 09:12 PM

More to share...

I finally tried white rice and it seems to be ok. Brown rice was a big NO but white seems to be better. How interesting!

But I have a different question.

For those with vulvodynia...and those with other food weirdness, how fast do you know you've eaten something bad or wrong? How quickly do you react? Depending on the food/issue, I react to vulvodynia foods almost immediately. I talked with my favorite physical therapist today and she thought that very was weird. She didn't say she didn't believe me and she didn't look at me like I was crazy (which is why I love her) BUT she thought it was strange because "the food hasn't even reached the stomach yet". She wondered how that was possible. Does anyone else have a super fast reaction to food?
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Posted 02 April 2010 - 10:47 PM

My friend has this. She has showed me the recommended diet for it. But she hasn't tried it. Reason being she has food allergies and if she eliminated all the other foods on top of what she already can't eat, her diet would be extremely limited. She is supposed to have some sort of surgery to help, but I don't know the particulars on that.
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Posted 03 June 2010 - 07:36 PM

I have this condition (was diagnosed in 1997) and definitely have a problem with foods high in oxalic acid. For me, when I pee it burns really bad, and often I burn for hours afterwards. It also causes a lot of external itching and irritation.
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Posted 09 June 2010 - 09:21 AM

Oh my gosh, I am sooo glad there are ladies talking about this!!! Help is WELCOME!

I started getting infections "down there" very very shortly after I had a major blow-up of Celiac Disease in 2009. I was in the ER for dehydration and a mess of other problems that we now know where celiac disease-related, and then a day or two later I was back because of an infection down there that had become so large and PAINFUL that they had to lance and drain it, then stuff it with gauze. :o Oh my gosh I nearly died of pain!

Anyways, since that time in 2009 I've had these infections recur. Because I haven't had any health insurance or Medicaid or anything like that, I wasn't able to see a GYN about it. I took antibiotics (which usually makes my gut problems worse) when it wouldn't get better and I was afraid of ending up in the ER again.

So I just got Medicaid and the 1st doctor appointment I made was for the GYN. I saw him on Monday and he was very nice and sympathetic but didn't have any answers for me. :unsure: Prescribed more antibiotics and some diflucan (sp?) to kill the yeast in my whole system (after the antibiotics lead to another wicked killer yeast infection). Guess I should mention that I never had a yeast infection prior to the Celiac Disease full-blown attack in 2009. But now they are common and difficult to treat with (messy) ointments and such. :(

From my personal experience and the timeline in how everything has happened between vaginal problems and Celiac Disease, I'd not be the least bit surprised to find out that they could be directly related. On the other hand, my problems with yeast infections are timed about the same and I do wonder if (based on other research I've been reading) yeast could cause the Celiac reaction which then causes the vaginal problems.

Read here to catch my drift :) : http://www.celiac.co...th-a-must-read/

Thanks for being willing to write about this. B) I'm feeling somewhat relieved not to be alone. It's such a personal thing so not like you just talk about it easily. :ph34r: There are no "significant others" in my life and I'm a virgin, but even the thought of a honeymoon makes me cringe. :blink: Oy! Anyways, suggestions are appreciated! Thank you, Ladies!!

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Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.


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Posted 11 June 2010 - 07:38 AM

I'm so glad this is up!!!

My Celiac symptoms have only been severe since about December 2009. It was over my Christmas break at home that I tried a new bath soak and it started an infection. Since then, any gluten is completely intolerable, and the infections return within a week of starting the medications for them. I read the link you posted and I'm wondering if this could be related, and if there is a way to find out.

I am returning to gluten starting in July to have an upper endoscopy in August because even after the diet change, I'm barely feeling 50%. Will this, or the biopsy included, show a Candida infection?

Any advise or links would be greatly appreciated.
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Posted 12 June 2010 - 06:07 PM

I've had problems with chronic yeast infections since I was 13 years old. In some cases, I would have infections for months without being able to get rid of them. It was hell. I'm wondering if that's one thing that caused me to get vulvodynia. I'm assuming the constant yeast infections can be another symptom of celiac disease?
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Posted 15 June 2010 - 07:31 PM

I have IC issues and Vulvodynia issues. The vulvodynia issues magically started going away over the last year or so. Not sure why other than I started supplementing with Vitamin D. After so many years of torture I hardly let my mind even wonder why I just say thank you to fate. The gluten-free attempt I'm making now SEEMS to be helping my bladder. Today I left the house to do one errand and decided, spur of the moment to get on the highway and go 40 minutes to Whole Foods, not sure where I might find a bathroom. That is UNHEARD of for me. So I def think Gluten issues affect the bladder and there is no doubt in my mind they can affect Vulvodynia, joints, etc. I can't prove it of course but I sure wouldn't doubt it. I intend to stay gluten-free forever. It's hard but just being able to have the freedom to get on that highway without the urgent bladder feeling was something I would never trade for the old comfort foods I loved.
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Posted 16 June 2010 - 08:40 AM

I posted this article awhile ago, but I thought it was worth posting again as it is related to this topic (see below). I tried the low-oxalate diet with some success; however, after reading this article it make me think about when I had a lot of flair ups and they were almost always gluten related...I always thought it was because I cheated and ate something high-oxalate (i.e. campbells tomato soup). Today, I can eat gluten free tomato soup without a vulvo flare-up...for me the gluten was the problem not the tomato. If only I had learned this 10-15 years ago...I could have avoided all those ob/gyn appts. I have not had a flare-up in months and the only time I have any problems is when I eat something that should have been gluten free and wasnít.

British Journal of Obstetrics and Gynaecology
November 1996, Vol. 103, pp. 1162-1163

Vulvodynia associated with coeliac disease
Christine Costello Consultant (Haematology), J. R. Smith Senior Lecturer (Gynaecology)
Chelsea and Westminster Hospital, London
Case Report

A 44 year old woman presented with a six-month
history of recurrent vulvovaginitis. She complained
of burning, itching and a greenish vaginal discharge.
The symptoms were worse before and after periods
and soreness precluded the use of tampons. There
was superficial dyspareunia with pain on penetration
and splitting of the fourchette even when using
lubricating jelly.

General and abdominal examination was unremarkable.
Genital examination revealed some atrophy
of the external genitalia, inflammation and tenderness
in the perivestibular area with Q-tip swab pressure. In
addition a small ulcer in the anterior fornix of the
vagina, a normal-looking cervix and a retroverted
uterus with normal adnexae were found. High
vaginal and endocervical swabs were taken for
culture and chlamydia detection and colonoscopy and
vulvoscopy were performed.

Vaginal pH was 5, and there was no evidence of
bacterial, viral or chlamydia1 infection. Vaginal and
cervical cytology were normal. Hormone assays did
not suggest that the woman was menopausal.
Colposcopy was normal, vulvoscopy revealed a
small split at the posterior fourchette with no areas of

Initial management was with advice to have saline
baths, avoid perfumed soaps and avoid wearing
tights. Dienoestrol@ cream (Ortho Pharmaceuticals
Ltd, High Wycombe, Buckinghamshire, UK) was
prescribed in view of the atrophic vagina although
oestradiol levels were normal. The patient was empirically
treated with oral metranidazole in view of the
vaginal pH and observable discharge. Her partner
was referred for genitourinary examination which
proved to be normal. No improvement of the
patientís symptoms occurred, although the later addition
of DaktocorP 1% cream (Janssen Pharmaceutical
Ltd, Wantapp, Oxfordshire, UK) led to some
Correspondence: Dr C. Costello, Chelsea and Westminster Hospital,
369 Fulham Road, London, SW 10 9NH, UK.
improvement for a few weeks. Relapse then occurred
with tenderness over the Bartholinís glands and
splitting at the fourchette and lateral to the clitoris.
She was thereafter prescribed Demovatem cream
(Glaxo Laboratories Ltd, Uxbridge, Middlesex, UK),
Sensellem vaginal lubricant (LRC Products Ltd,
Chingford, London, UK) and an oral anti-inflammatory
agent. She improved substantially over the next
two months but again relapsed.

The patient was noted to have mild iron deficiency
with haemoglobin 11.9 g/dL (12.0-16.0), mean
corpuscular haemoglobin 26.4 pg (27-32), serum
iron 5-1 pmol/L (10-30) and saturation 8.49%
(20-55), but oral iron therapy failed either to improve
her iron status or alleviate her symptoms. Further
investigations were undertaken to elucidate the cause
of the iron deficiency. Her periods were not heavy,
and there were no symptoms of gastritis. She was
slim but denied weight loss. She had felt excessively
tired over the previous few months and had noticed
abdominal bloating and excessive flatus. The bowels
moved once daily and the stools appeared normal.
The diet included meat, green vegetables and salads.
B12 level was normal at 446 ng/L (160-800), but
serum folate and red cell folate levels were reduced at
2 pg/L (3-15) and 85 pg/L (150-700). Serum ferritin
(after several weeks of iron therapy) was reduced at
5 pg/L (8-140); serum calcium and serum proteins
were normal. Antiendomysial IgA and antigliadin
IgA antibodies were detected in the serum. These
findings were very suggestive of malabsorption
secondary to adult coeliac disease, a diagnosis confirmed
on duodenal biopsy which showed a marked
degree of villous atrophy and increase in chronic
mononuclear inflammatory cells within the lamina
propria and surface epithelium. Crypt hyperplasia
was present.

The patient began eating a gluten-free diet and
took oral iron and folate supplements. Within a few
weeks her vulva1 symptoms had markedly improved
and by two months had completely resolved. Her
energy level returned to normal and her symptoms of
abdominal bloating and excessive flatus disappeared.


Vulvodynia or vulvar vestibulitis is a recentlydescribed
condition in which patients complain of
chronic vulval discomfort with acute superficial
tenderness and dyspareunia. The cause is probably
multifactorial; infections with human papillomavirus
and Candida albicans have been implicated in some
patients, dermatological conditions such as lichen
sclerosis and inflammatory dermatoses in others'.
Histopathological findings are consistent with a
chronic, nonspecific inflammatory response and
occasionally metaplasia of the minor vestibular
glands is seen.

Standard gynaecological/genitourinary investigation
of our patient with recurrent vulvovaginal
discharge, soreness and vestibulitis revealed no evidence
of bacterial or viral infection and no evidence
of cytological abnormality. Empirical antibiotics,
antifbngal agents and anti-inflammatory therapy
produced only temporary relief. Correction of her
haematological deficiencies and management of
her coeliac disease produced complete resolution
of her symptoms.

Folates act as coenzymes in the transfer of single
carbon units in reactions involved in DNA and RNA
synthesis. Folate deficiency affects all rapidly growing
(DNA synthesising) tissues and, in addition to its
effect on the bone marrow (leading to megaloblastic
erythropoiesis), folate deficiency also affects the epithelial
surface of the mouth, stomach, small intestine
and female genital tract2, the cells showing macrocytosis
with increased numbers of multinucleate and
dying cells. Iron deficiency may also lead to mucosal
changes but these are usually confined to the mouth
and tongue. It is very probable that the fissuring noted
in our patient was due to folate deficiency and the
pruritus secondary to iron deficiency. The rapid
response to treatment with folate and iron supplements
along with a gluten-free diet suggests that her
vulvodynia was associated with the effects of
her coeliac disease. Iron treatment alone had been
unsuccessful either in relieving the pruritus or in
correcting the iron deficiency since she was not capable
of absorbing iron adequately until gluten was
excluded from her diet. We postulate that the cause of
her vulvodynia was mucosal damage resulting from
folate deficiency. It is very important that all
concerned in the management of vulval disease are
aware of the systemic causes of vulval symptoms.

1 Kehoe S, Luesley D. Pathology and management of vulval pain and
pruritus. Cum Opin Obstet Gynecoll995; 7: 16-19.
2 Hoffbrand AV. Megaloblastic anaemia. In: Hoarand AV, Lewis SM,
editors. Postgraduate Haematology. Oxford: Heinemann Professional
Publishing, 1989: 55-82.
Received I1 December 1995
Accepted 19 March 1996
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Diagnosed with IBS w/ Constipation in July 2005
Diagnosed with Hashimotoís Thyroiditis in June 2009
Officially Gluten-free since July 29th, 2009

A life spent making mistakes is not only more honorable but more useful than a life spent in doing nothing. - GEORGE BERNARD SHAW



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Posted 19 June 2010 - 05:56 PM

Wow, that is interesting (the article). I figured there was some connection between vulvodynia and Celiac. I also really think there must be a link between celiac disease and chronic vaginal yeast infections/candida.
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Posted 11 April 2011 - 12:30 PM

Hi Everyone,

I found this forum while reading the low-oxalate website and have found it extremely helpful.

I was recently diagnosed with Vulvodynia/Vestibulitis and have been reading everything I can get my hands to learn more about what's wrong with me. When this started about a year ago my Gyno told me nothing was wrong with me. Since then, my internist has helped me identify the problem, but I do not know of a "specialist" to go to and see to find out more. The doctor that my internist referred me to received AWFUL reviews online, so I was nervous about going. I decided to try another gyno in hopes that they would know more than my old one, but my *new* gyno told me there was no such thing as a Vulvodynia specialist. She does, however, "believe" that I am suffering and prescribed biofeedback PT, but other than that she didn't seemed too interested in helping me.

I live in NYC and from what I have been reading online it seems that there are indeed specialists in this area, however I don't know which one to contact. Does anyone on this forum have any suggestions on doctors in the NYC area that specialize in Vulvodynia, etc AND/OR physical therapists for biofeedback therapy? I am at a loss and my current doctor is not helping me with my search to find a specialist.

Thank you very much in advance. All of your comments have been very useful and I plan to begin the lo-oxalate diet ASAP, as well as trying other remedies suggested.

Thank you!
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Posted 25 July 2011 - 04:59 PM

Here are two very excellent sources of information regarding vulvodynia:

The Vulvar Pain Foundation http://www.thevpfoundation.org/ and the Yahoo Low Oxalate group http://health.groups...g_Low_Oxalates/

I also have this condition and have just begun the low oxalate diet and calcium citrate.
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