Vulvodynia

Vulvodynia – Bladder Pain Syndrome/Interstitial Cystitis


Dietary Considerations


Table of Contents Yeast-free Diet

Diet and Vulvodynia

There are no specific dietary recommendations in relation to vulvodynia. However, each individual case is different and some women may have sensitivity to specific chemicals and foods that may potentially contribute or exacerbate their symptoms. Women prone to recurrent yeast infections may need to exercise caution in relation to intake of sugars and foods high in yeast, in some cases a low yeast diet may be necessary. Others may have sensitivities, allergies or be intolerant to very specific foods and products like nuts or gluten. The compounding impact of gluten intolerance and of Coeliac Disease is well illustrated in the case study presented below. In cases where individuals suffer from bladder pain and vulvodynia, following the guidelines listed under nutrition and bladder pain will be relevant. Consulting with your primary carer and nutritionist is important.

Dietary Oxalates and Vulvodynia

Some time ago a case report was published linking dietary oxalates to vulvodynia. The case study described complete remission of vulvodynia following a low-oxalate diet with calcium citrate supplementation. This gave rise to the belief that oxalates may play a role in the onset and maintenance of vulvodynia symptoms. Various studies have examined potential links but in general none have been found. A large-scale population based study in the United States by Bernard Harlow et al (The Journal of Reproductive Medicine, 2008) concluded “We were unable to identify any association between dietary consumption of oxalates and the subsequent onset of vulvodynia.” No other studies since have reported findings to the contrary. These findings do not rule out the possibility of individual sensitive to dietary oxalates.

Yeast Free Diet

Diet written by Elizabeth Simonsen, R.D., 157 Myers St., Geelong

The diet involves avoiding refined carbohydrates and foods containing yeast, fungi, and moulds. Foods for this diet are divided into three groups:

Group 1

Low Carbohydrate Foods which may be taken without counting as part of the diet.

Group 2

Moderate Carbohydrate Foods unrefined carbohydrate foods permitted in specified quantities.

Group 3

Refined, High Carbohydrate Foods, and all foods containing yeasts, fungi, or moulds – these foods must be strictly avoided. Many foods acquire yeast, fungi, or mould growth on keeping – these may (or may not!) – be a ‘normal’ component of the food and may not be visible to the naked eye. For the purpose of this diet, please ensure that all foods, including fruits and vegetables, are as fresh as possible. Any foods left after a meal:

  • should be refrigerated immediately and used the next day, or
  • frozen and used when required.

Environmental Mould: Check the home for sources of mould and mildews – under the sink in the kitchen or laundry; in the shower recess; pot plants, etc. WHAT IS ‘CANDIDA ALBICANS’ – Candida Albicans is a Yeast Growth. It is present in all of us, but normally is kept under control by the “helpful” bacteria in our intestines. However, when something destroys these helpful bacteria (eg. the excessive use of antibiotics), the yeast organism may grow unchecked in the intestines, producing range of symptoms. Symptoms fall into three general areas.

  • Inflammations Affecting bowel, bladder, stomach, vagina, etc.
  • Allergy Asthma, bronchitis, headaches, earache, hives, acne, etc.
  • Emotional & Mental Extreme irritability, memory lapses, severe depression, etc.

Candida overgrowth may affect anyone, but is most common in women. The aim of the treatment is: 1. To Remove the yeast from tissue – your doctor may prescribe an antifungal drug. 2. Not to feed the yeast growth – yeasts feed on sugars and, refined carbohydrates – so the diet is low in refined carbohydrates. 3. Not to encourage yeast growth – avoid all yeasts, moulds, and fungi both in your environment and in the food you eat. 4. To build up the body’s ability to resist infection. Initially the diet is strict but, on improvement of the condition, can be gradually relaxed.

Group 1

Low Carbohydrate Foods: These foods contain very little, or no, carbohydrates and may be taken freely as indicated. (a) Vegetables and Fruits: Take Freely: Asparagus, broccoli, cabbage, capsicum, cauliflower, celery, chinese cabbage, endive, garlic, kohl rabi, lettuce, marrow, radish, rhubarb, silverbeet, spinach, summer squash, watercress, zucchini. Take small server only i.e. use mainly as flavourings: Avocado (1/2), brussel sprouts (2), chokoes, french beans (1/3 cup), kale, lemon (1), okra, onion (1/2), passionfruit (1/2), tomato (1/2), turnip (1/2), watermelon (small piece). (b) Meat and Meat Substitutes Take normal server as desired: Meat, fish, poultry, pork, ham, bacon, shellfish, tinned fish, brains, liver, kidney, tripe, eggs. Plainly cooked (grilled, roast, steamed),stew (preferably unthickened and without tomato sauce, tomato juice, or yeast extracts). Cheese – Fresh homemade ricotta or cottage cheese made using junket tablets or lemon juice. Philadelphia – Philadelphia light. (c) Fats & Oils: Take normal moderate amounts: Butter, margarine, fresh cream, oils. (d) Fluids: Take Freely: Water, soda water, natural (unsweetened) mineral water, clear soup.

Group 2

Moderate Carbohydrate Foods

These foods are higher in carbohydrate (complex) but contain no yeasts. These may be eaten in moderation.

Cereals

Processed Fruits

Vegetables

Oatmeals / wheatmeal, Wheatgerm or ‘Weatharts’, Granose, Vita-Brits, Ready Wheat, Shredded Wheat Puffed, Wheat / Rice / Corn, Barley / Rice (brown or unpolished), Pasta (Wholemeal), Flour (Wholemeal), Flour (Wholemeal)

Cooked or canned in water, with no added sugar and not in fruit nectar or juice:

Apples, Apricots, Gooseberries, Nectarines, Peaches, Pears, Pineapple – diced, Pineapple – rings, Quinces, Raspberries, loganberries, blackberries
Carrot, pumpkin, Swede, beetroot, Grated carrot, Parsnip, Potato, Potato chips, Peas, broad beans, Sweetcorn, Brussel sprouts, Turnip – white, Leeks, Tomato, French (green) beans, Sweet potato, Taro, Artichokes – Jerusalem, Globe, Dried beans, small varieties, e.g haricot, kidney, Dried beans, large white, e.g. lima beans, Soya beans, Lentils, Chick peas (Garbanzo)

Breads

Biscuits

Dairy Foods

Home made fresh bread, scones or pancakes, made from wholemeal flour and using no yeast, Sour Dough Bread, Commercial, Commercial “Flat Bread” Ryvita, Vitawheat, Wasa, Kavli, Rice Cakes Milk (skim / whole / Rev), Liquid Evaporated milk (skim, whole), Milk Powder (skim), Milk, Powder, (full cream), Fresh natural Yoghurt – Jalna (preferable home made)

Fruit Juices

Fruits – Fresh

Fruits – Fresh

Freshly squeezed or ‘juiced.’, No Commercial Products, Orange / Grapefruit juice, Apple / Pineapple juice, Tomato / Vegetable juice, Apricot Nectar Apple, Apricots, Banana, Cherries, Custard apple, Figs, Fruit Salad (no grapes, dried fruit), Gooseberries Kiwl fruit (Chinese Gooseberry), Loquats, Mandarines, Mango, Nectarines Orange, Passionfruit, Paw Paw, Peach, Pear, Pineapple, Plums, Pomegranite, Raspberries, loganberries, blackberries, Strawberries, Watermelon

Group 3

Refined, High Carbohydrate Foods, and all foods containing yeasts, fungi or moulds. These foods must not be eaten as they contain large amounts of sugar and or refined carbohydrate, and will encourage the growth of Candida.

Cereals

Processed Fruits

Vegetables

Sugar, Jam, Sweets, Honey, Golden Syrup, Molasses, Glucose, Soft Drinks, Barley sugar Sweetened Coffee, Essence, Crumpets, Sugar Coated Cereals, Candied Fruits, Dried Fruits, Made up dishes, Chocolates, Cordials, Alcoholic drinks Sweetened Condensed Milk, Pies, Pastries, Commercial Muesli, Tinned Fruits in sugar syrup, Tinned Fruits in Nectar / Juice Cakes, sweet biscuits, Tonic water

These foods must not be taken as they normally contain yeasts, fungi, or moulds:

Cereals

Processed Fruits

Yeast extracts (Marmite, Vegemite, Promite), Bread, Cereals, Biscuits, Pastries, Buns, Rolls, Waffles, Cakes, Cake Mix, Malt / Malted Milk, All malted products, Cheeses, Peanuts, Pistachio Nuts, Peanut Butter, All Alcoholic Beverages All Dried Fruits, Mushrooms / Champignons / Truffles, Olives, Bean Sprouts (commercial), French Dressing, Salad Dressing, Mayonnaise, Mint Sauce, Tomato Sauce, Vinegar (Malt/Cider), Dried Herbs & Spices, Canned Fruit & Vegetable Juices, “B” Group Vitamin supplements derived from yeast

A personal case study – My journey with vulvodynia, bladder pain and coeliac

Last year I turned sixty. Sixty feels like a watershed, a milestone, and you know you are closer to your end than your beginning. But last year was the year I felt I made a breakthrough in understanding the possible cause of the pain I have struggled with for at least fifty of those years.

I am a wife, a mother of two adult children and a grandmother of five beautiful kids. I have worked, studied, run a business, raised a family, cared for, and said goodbye to, my parents. I love to garden, cook, eat, travel, swim, walk, and renovate houses. And I have nearly always had a pain in my stomach, felt like I needed to go to the toilet, had a backache, and been itchy, burning and uncomfortable in my vulva, as well as having intermittent bouts of diahorrea, digestive upsets, and sometimes an overwhelming fatigue that felt like jet lag.

Those symptoms came and went over the years, not all of them occurring at the same time (thank goodness!) and episodes were spaced far enough apart that I didn’t really connect them all. So I had lots of tests for individual symptoms over the years, usually with no results to explain anything. I have had my appendix out (the pain came back), a hysterectomy ( it fixed one problem and made others worse), and more x-rays, scans, and blood tests than I can remember.

About 12 years ago, one symptom overtook all the others in severity, and the impact it had on my life. The vulval pain got so bad that I could no longer be sexually intimate with my husband. If you have vulvodynia, you understand the pain and mental anguish, I don’t need to describe it.

My search for answers took up the next eight years, until I was finally referred to a wonderful gynaecologist who knew exactly what was causing the pain, and what to do about it. So I had some surgery (most people don’t need surgery, in case you are getting scared about this) which made a huge improvement for me, and I have learned to use biofeedback, breathing control, relaxation, and exercises to help me manage it. (And, yes, I can now be intimate with my husband again). I also remained on Endep to help with the lingering anxiety caused, I believe, by all the years of pain and not knowing what was wrong with me.

About a year ago, I began to suffer from cramps in my leg muscles, and to feel very tired quite often. And the bladder pain and urgency was worsening. I often felt it was difficult to concentrate, and began to need to sleep in the afternoon. I put this down to getting older! I also noticed odd tingling sensations in my toes. Then I started to get strange blisters in my mouth and throat. My dentist and doctor were both puzzled, and eventually I was referred to an oral medicine specialist, who diagnosed them as mucoceles, which are caused by saliva glands being blocked. She also remarked that I had a condition called “geographic tongue”, which is an odd kind of blotchy pattern that comes and goes on my tongue. It is sometimes quite painful. When I mentioned my vulvodynia in my patient history form, the doctor commented on a condition called “burning mouth syndrome”, saying she believed it was a similar type of condition. I asked if the Endep, which is known for causing dry mouth, could in some way be causing the mucoceles, and the specialist agreed it could possibly, and the only way I could find out was to try and stop taking them, and see if it made a difference. (Note that if you are on this type of medication you should not stop taking it suddenly, and you should consult your doctor about how to gradually lessen the dose).

I was quite keen to get off the Endep, not only to see if my mouth would get better, but also because I had put on weight, and I felt maybe this was a side effect too. In fact, I was so keen to lose weight that I stopped eating bread and pasta, substituting more vegetables, fruit and nuts. I had already given up tea, coffee, alcohol and chocolate to see if that would help the bladder pain, and it did make quite a big improvement. (I have also found that citrus, tomatoes, cranberry juice and carbonated mineral water cause the bladder discomfort to get worse.) I started to feel better, and to have more energy, and was able to start taking longer walks again, and swim regularly. I thought that this was due to being off the Endep rather than the changes in my diet.

One day, after discussing my oral symptoms with my chiropractor, as part of a general health check, he asked if I had ever been tested for coeliac. He is himself coeliac, and so more aware than most about all of the possible symptoms, and also has the same oral symptoms that I do. He commented that the symptoms are more common in coeliacs than the general population. I didn’t think much about it until a few days later when I indulged in a few slices of fresh bread, and immediately became uncomfortable in my stomach. The next day I was violently ill with dreadful stomach cramps and diahorrea. I noticed a flare up in the mucoceles, and the geographic tongue, and the vulval and bladder pain!

This was a lightbulb moment for me, and I started reading everything I could find about coeliac, bladder pain and vulvodynia, and I decided I would keep a diary of everything I ate and drank, and my various symptoms and pain. Then I did a two week trial of going completely gluten free and I started to feel so much better again. After the two weeks, I visited my GP and told her all I had been doing. She looked at me for a minute and said, “well, yes, I think you do need to be tested for coeliac.” The downside was that because I had gone gluten free, I needed to start eating it again for 4 weeks in order for the blood tests to be accurate. That was a very long four weeks, and by the end of it I felt terrible, like I had the flu and jet lag at the same time, and my bladder was incredibly painful.

I was almost relieved when the test results showed that I did have the coeliac gene, and gluten antibodies in my blood. I am still waiting to see a gastroenterologist, and have some more tests, but most of all I am happy to have found out why I have had all these stomach problems, muscle aches, oral problems and fatigue.

My experiments with my diet so far have found that what I eat and drink has a very significant impact on my bladder and vulval pain as well. I know it is complicated, and I am not a medical person, but I really hope that further research might be done to see whether coeliac is a contributing factor to vulvodynia and bladder pain syndrome. At the very least, I hope that when women present to their doctors with vulval pain and bladder pain syndrome, that they might be tested for coeliac. From my own experience, I strongly believe there is a connection. The reason I have wanted to write my personal journey is in the hope that it might be of some help to other women. The pain and the search for answers can seem overwhelming, but I want to encourage you not to give up in your journey towards better health.

Now, sixty feels like it might be a new beginning. I am exploring gluten free food and experimenting with recipes, about to embark on our seventh house renovation, and am planning my new garden. I have more energy for my grandchildren, we are looking forward to more travel, and for the first time in decades, I don’t feel aware of my bladder and vulva all the time.

I am so grateful for all of the help I have had from my wonderful doctors and health professionals. Their knowledge, encouragement and willingness to listen to me has helped so much. And to my wonderful, patient and long-suffering husband, who has walked this journey with me for so many years, thank you.