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Discussion Starter · #1 ·
Hi! :)<br><br><br><br>
I'm a 24 year old young woman living in Finland. I have been diagnosed with vulvodynia, which is chronic neurologic pain disorder (similar like fibromyalgia and actually associated with it, many women who have fibro also have vulvodynia), but unfortunately the pain focuses on genital area. For more information about the disease check out National Vulvodynia pages etc.<br><br><br><br>
Doctors suggest nowadays that women would eat low oxalate diet for vulvodynia. I've been a vegetarian for several years and I do try to avoid animal ingredients (not completely vegan though). However, even before all this I had trouble making nutritious meals, since I'm allergic to many fruits, berries and vegetables. Especially tomatoes, all kinds of citrus fruits or fruits with seeds on it (like kiwi), strawberries, raspberries etc. My allergies have gotten worse every year and before I had only sores in my mouth, now I get a large rash everytime I eat any of the foods.<br><br><br><br>
So with that limited selection of food I've been dealing quite well and taken extra B12 and multivitamin as well as evening primrose oil (for severe PMS). But I don't know what I can do now when I have so many diseases. How can I eat a balanced diet with all these restrictions? Does anyone have any advice? I know that the vegan diet actually is good for people with chronic pain diseases, this is scientifically proven by some internationally famous studies, but how can I get all what I need from the diet when I should also follow the low oxalate diet and watch out for allergies?<br><br><br><br><br><br>
Sincerily asking for any advice, Vera. :)
 

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I've been diagnosed with that condition too. I've not tried the low oxalate diet (no doctor has suggested it), only amitryptiline which didn't really do anything. I just cope with it now, it's not that bad for me. I'm sorry I can't give you more help.
 

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I've got it too and interstitial cystitis (essentially the same thing, only with the urinary tract). I pretty much gave up on the low oxalate diet. I couldn't manage enough complex carbs to keep my blood sugar stable (whole grains are excluded and white grains all the time make me feel like crap), vegetables were too restricted for me and unless I was eating as close to oxalate free as possible I couldn't tell a difference. I was on a series of drugs for about a year (elavel and related pills) and they did help but they all made me feel so crappy in other areas I decided to just deal with it. Everything I tried caused depression, anxiety, paranoia, mood swings, anger, extreme exhaustion etc.<br><br><br><br>
I'm sorry I can't offer any actual helpful advice, but I know how much it sucks.
 

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Discussion Starter · #4 ·
Ok.. So, maybe I'll not try it at all. :)<br><br><br><br>
I love complex carbs and have to eat practically every two hours because otherwise I'll become hungry, my blood sugar will drop and I start acting funny (really, like I'm on the town and cannot find home because I'm just so fuzzy in the head). I try to follow the GI-diet with low-fat vegetarian (vegan) food.<br><br><br><br>
I just have to say that even though I'm sorry that you girls have this condition, I'm so glad to finally meet someone who is also a vegetarian and suffers from this. I just recently find out that I have it, so I haven't still got drugs for it so I have to rely on just basic over-the-counter drugs like aspirin. What kind of type do you have? Vestibulitis or dysesthetic? I have mixed, I've had it since I got my periods. I also suspect that I have fibromyalgia and I have bladder problems as well (thinking of IC, but not sure). I hope that when I see my doctor again he/she could prescribe me either tricyclic or SSRI's (there are studies that say that they works just as good, and these newer drugs also have fever side effects - I've studied some clinical psychology.) as well as Neurontin. Now I just have paracetamol, aspirin and ibuprofen. :-(<br><br><br><br>
How does vulvodynia involve your lives? Do you take any supplements or natural therapy (like acupuncture or reflexology)? I've heard that gingko bilabo, gingseng and St. John's Worth would help dealing with vulvodynia. Have you tried those?
 

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I have vestibulitis. Do you find that painkillers help?<br><br><br><br>
I don't take any kind of medication for it, prescribed, OTC, or supplements. It affects my life though, because I can't swim in chlorinated pools, change my shower toiletries and I use aqueous cream to wash with.<br><br><br><br>
For me, it seems to be quite pschologically dependent - sometimes, at least. When i first met my boyfriend, my vulvodynia seemed to have disappeared for a couple of months, but then it came back. Now it comes and goes, a few days good, a few days worse. I'm prone to thrush and that makes it worse so I put a lot of effort into avoiding that (unfortunately I've just been put on antibiotics though).<br><br><br><br>
Does anyone know what started theirs off? I think for me it was recurrent thrush and the consequent use of topical creams.
 

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Discussion Starter · #6 ·
I think that mine is neurological one, more dysesthetic than vestibulitis. I found out about a study that says abuse in childhood is related to vulvodynia, especially physical one. I suffered from it a lot, so I guess that could be the reason for me. It may be because of fibromyalgia also, 30% of women who get it also have vulvodynia and they both are suspected of being neurological problems (though, I guess especially vestibulitis type of vulvodynia could be result of something else since it's more located on certain place compared to dysesthetic).<br><br><br><br>
The over-the-counter painkillers don't really work that much, I am thinking of getting prescribed drugs like amitrypline and Neurontin as soon as I've seen my doctors again.<br><br><br><br>
For me it's very restricting, I have pains constantly and suddenly all over the body, but especially in the vulvodyania area. I also have bladder problems that make it worse. I feel like I cannot go outside anymore, I cannot involve to anything that requires dedication since I cannot promise that I'll be there everytime. Presence is compulsory in my school, so when I cannot go to a class that one particular day, then the whole course is over and I have to wait a year since I can take it again. When I am out, I feel like I need to go to the bathroom every second and I have to plan my way to work/school/restaurants so that there is always a bathroom near me.. I'm very tired with all this.. It's just ruining my life and getting worse. :-(
 

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Vera things can get better, when I first got diagnosed my symptoms were very bad, but over the last few years things have become much more manageable. For me my PH isn't quite right so I'm prone to mild yeast infections and any amount of yeast drastically increases symptoms (sometimes the only symptom of a yeast infection for me will be IC and vul. symptoms increasing) so I use apple cider vinegar often. Also, you might try some of the over the counter topical pain relievers for yeast infections, etc. They helped me a lot when I would have to sit/drive/work for a long time when things were bad.
 

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17 yrs ago I had a kidney stone and was advised to go onto a low oxalate diet, as I would be prone to more stones as I have a cystic kidney. That year I went veggie. I have never had a reaccurance of stones (touch wood!).<br><br><br><br>
Tomatoes,strawberrys are two highly oxylated food I can remember that. Now a vegan I dont stick to a low oxylate diet for the amount of oxylate food in my diet is fairly low, I think. BTW red meat is a no-no as its full of oxylate.
 

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Discussion Starter · #9 ·
Thanks for the low-oxalate info poppyseed!<br><br><br><br><br><br>
thebelovedtree:<br><br><br><br>
I've never had yeast infections and my doctors haven't found any reason to think that I have one. My pain comes suddenly, without a warning, especially increasing at evenings (lower estrogen level increases the pain), it's not so much located on the vulva, but the uterus, intestines, lower stomach, bladder, ovarians, buttocks, thighs.. The pain is in the vulva only when I try intercourse, gyn examination or bicycling etc. Then it's burning kind, not stabbing or pushing like the constant pain (which I'm having right now and have had for many hours today as well as last night and day before that and day before that..). Dyspareunia feels to me like torcher put inside me.. Just a little q-tip makes unbearable pains..<br><br><br><br>
I really do not know what could me help me now.. *sigh* I have codeine tablets, but they cause stomach problems for me and I'm afraid I'll get addicted to codeine (which is an opiate) if I start taking it regularly. It also makes me sleepy which interferes with school work and else. I feel so hopeless right now, since there is no "cure" for this sickness and I have to wait two weeks before I meet the new specialists that are going to help me. Well, it's only 15 days.. I guess I can handle that.. I hope. :-(
 

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OMG, I have vulvadynia too! However, on a more positive note, after being told to go on a low oxalate diet, I found it didn't help me at all! I can eat whatever I want and I feel the same.<br><br><br><br>
I have had this problem for a long time and have gone to great lengths to find out as much as I could about it. For me, the case is extremely interesting/bizarre and has nothing to do with toxicities in my body. It was discovered that my left thigh is somewhat shorter than my right, I guess about 1/2 inch. Anyway, I was a competitive tennis player for 9 years (I am 19 years old), playing tennis for 4+ hours per day. All this pounding on the tennis court for such a long time with this leg discrepancy caused the muscles in my pelvic area to become very tense. As a result, the nerves began firing pain messages to that area. I just figured this out last month after searching for over a year. I went to see one of the world's best physical therapists (he treated Christopher Reeves and presidents and has a huge waiting list) and he explained this to me after I told him about myself.<br><br><br><br>
The solution? Put a lift in my left shoe. I started doing this a week ago and am already noticing a slight improvement. He said it would take 3 weeks to start feeling better and 3 months to heal completely. Amazing...<br><br><br><br>
I don't have to go through all that standard medicine crap so I am super happy!<br><br><br><br>
As far as the low oxalate diet, don't give up eating those veggies and fruits. I really don't think the low oxalate diet makes a huge difference like they say it does. I can attest to it. If you were to follow that diet, eating chicken, white rice, and other bland, low nutrient foods, you would be compromising your health.
 

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belovedtree: if you don't minfd me asking, how do you use cider vinegar? I can't use topical creams because my skin is too sensitive.<br><br><br><br>
Vera: it sounds terrible for you. I hope you and your doctors manage to find some sort relief.
 

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I just dilute it way down (like a tbsp to a cup) and sort of rinse things out with it. I do this several times a day until symptoms have improved.
 

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<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>Vera82</strong> <a href="/forum/post/0"><img alt="View Post" class="inlineimg" src="/img/forum/go_quote.gif" style=""></a><br><br>
Thanks for the low-oxalate info poppyseed!<br><br><br><br><br><br>
thebelovedtree:<br><br><br><br>
I've never had yeast infections and my doctors haven't found any reason to think that I have one. My pain comes suddenly, without a warning, especially increasing at evenings (lower estrogen level increases the pain), it's not so much located on the vulva, but the uterus, intestines, lower stomach, bladder, ovarians, buttocks, thighs.. The pain is in the vulva only when I try intercourse, gyn examination or bicycling etc. Then it's burning kind, not stabbing or pushing like the constant pain (which I'm having right now and have had for many hours today as well as last night and day before that and day before that..). Dyspareunia feels to me like torcher put inside me.. Just a little q-tip makes unbearable pains..<br><br><br><br>
I really do not know what could me help me now.. *sigh* I have codeine tablets, but they cause stomach problems for me and I'm afraid I'll get addicted to codeine (which is an opiate) if I start taking it regularly. It also makes me sleepy which interferes with school work and else. I feel so hopeless right now, since there is no "cure" for this sickness and I have to wait two weeks before I meet the new specialists that are going to help me. Well, it's only 15 days.. I guess I can handle that.. I hope. :-(</div>
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I have Vulvodynia and IC both. It has been very difficult for me. I was diagnoised with IC in August of this year, but have had the condition since last December. I have self-diagnoised myself with Vulvodynia. I can't seem to find a doctor who knows anything about either diseases/conditions. I started myself on a low acidic diet (For the IC) and a low oxalate diet (For the Vulvodynia) conbined, and it seems to be working so far. I mainly have more trouble with the Vulvodynia than with the IC. I have trouble with long walks on standing to long, sitting on hard surfaces and also with exercise. I do not take drugs for either condition, only an over the counter pain releiver that I've found which works well if taken at regular intervals.
 

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<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>Vera82</strong> <a href="/forum/post/0"><img alt="View Post" class="inlineimg" src="/img/forum/go_quote.gif" style=""></a><br><br>
I think that mine is neurological one, more dysesthetic than vestibulitis. I found out about a study that says abuse in childhood is related to vulvodynia, especially physical one. I suffered from it a lot, so I guess that could be the reason for me. It may be because of fibromyalgia also, 30% of women who get it also have vulvodynia and they both are suspected of being neurological problems (though, I guess especially vestibulitis type of vulvodynia could be result of something else since it's more located on certain place compared to dysesthetic).<br><br><br><br>
The over-the-counter painkillers don't really work that much, I am thinking of getting prescribed drugs like amitrypline and Neurontin as soon as I've seen my doctors again.<br><br><br><br>
For me it's very restricting, I have pains constantly and suddenly all over the body, but especially in the vulvodyania area. I also have bladder problems that make it worse. I feel like I cannot go outside anymore, I cannot involve to anything that requires dedication since I cannot promise that I'll be there everytime. Presence is compulsory in my school, so when I cannot go to a class that one particular day, then the whole course is over and I have to wait a year since I can take it again. When I am out, I feel like I need to go to the bathroom every second and I have to plan my way to work/school/restaurants so that there is always a bathroom near me.. I'm very tired with all this.. It's just ruining my life and getting worse. :-(</div>
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Vera82,<br><br>
It sounds to me like you have more symptoms of IC (Interstitial Cystitis) than Vulvodynia, like I said in my previous reply, I have both and the burning is what bothers me more than anything. The over the counter medication that I take is "Cystex" which I find at Rite-Aid, it is in the female section where the feminine products are located. Have you been to a urologist to be checked for IC yet? You should be able to control some of the pain by switching to a low acidic and low oxalate diet combined. It is very restricting, but it sure is better than being in pain all the time. I've had this condition for over a year now and by just constantly being on the inter net and reading everything I could get my hands on I've been able to reduce my pain by 75%. Some days I'm good other days, for whatever reason, I have a set back and that is when I just try and take it easy. Also one thing that has really helped me is taking Citracal, 250mg+D, 2 tables twice a day. It binds with the oxalates in you diet and helps reduce them. Also, one thing I never thought of (Read it in one of my books) was washing your undergarments without fabric softener. I started doing that about a week ago and it seems to take away some of the burning also. So much to learn about these conditions, but please don't give up, just keep trying and read everything ou can about IC and Vulvodynia, something will work for you I'm sure. Good luck.
 

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Discussion Starter · #16 ·
Hi sla944! <img alt="" class="inlineimg" src="/images/smilies/smiley.gif" style="border:0px solid;" title=":)"><br><br><br><br>
Well, I think I have mixed typed vulvodynia (vestibulitis + dysesthetic). I'm still waiting for the specified diagnosis. If you have read about IC, then you'll know that vulvodynia causes some IC types of symptoms. I'm not sure, if that's what's happening, but I guess that could be possible. I'm thinking of getting antidepressants (for mental health reasons as well), so that should help with the pain (as antidepressants like SSRI's are the primary treatment for vulvodynia nowadays, and especially SSRI's work better for females than tricyclics, though they haven't done much testing with SSRI's with vulvar pain). I haven't been to an urologist, but hopefully I'll be able to do that. However, what I've heard is that gynecologists work also with female bladder problems (at least they do here in Finland), so if they cannot help me then I'll go to see an urologist. For now, I'm seeing at least 3 professionals at this time (primary physician, vulvar specialist-gynecologist and a psychologist). I have chronic tooth ache and should go to the dentist as well..as I just had root canal treatment a year ago and I always have caries.. but I don't have the strenght to do this all at the same time. But, still thanks for the advice! I really appreciate it. <img alt="" class="inlineimg" src="/images/smilies/smiley.gif" style="border:0px solid;" title=":)"><br><br><br><br>
The pressure with school is especially, since we get student allowance in Finland based on our progress at school. So every year they check out our records to know if we have reached our progress level. If I continuesly miss courses, then I will not get the allowance to live and don't get my student loan anymore as well. Then I'll have to apply for other allowances (which require a job etc), which is a big hazzle that I do not need at this point. *sigh*
 

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<p>Dear Vera,</p>
<p> </p>
<p>May I suggest juicing leafy greens and fruits since it involves no energy on digestion and has no oxalates and will correct any nutritional deficiencies (in my opinion) </p>
<p> </p>
<p>Also do green smoothies (very tasty) <a href="https://www.youtube.com/watch?v=f0CaFTt3fnY&list=FLGRzUYRJoWXAB9fjdQMHg_A&index=2" target="_blank">https://www.youtube.com/watch?v=f0CaFTt3fnY&list=FLGRzUYRJoWXAB9fjdQMHg_A&index=2</a></p>
<p> </p>
<p>I was diagnosed with leaky gut and crohns disease and I also had Candida.</p>
<p>I got rid of my candida by following advice from this source (<a href="https://www.youtube.com/watch?v=weB4oDynoWo" target="_blank">https://www.youtube.com/watch?v=weB4oDynoWo</a>) and I got rid of it in less than a week. </p>
<p> </p>
<p>Also have been putting aloe vera fresh picked into my smoothies to plug up the holes in my gut. </p>
<p> </p>
<p>Also Millet is the one grain that people are least likely to be allergic to. I would recommend cutting all other grains and going on raw foods to let your body start healing itself.</p>
<p> </p>
<p>keep strong,</p>
<p>Alex</p>
 
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