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Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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In the UK with some questions...

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In the UK with some questions...

Post  WaahwaahUK on Fri Jul 31, 2015 7:42 pm

I was just wondering re: calcium citrate. When I've looked online it seems to say calcium phosphate or carbonate as opposed to citrate. Anyone in the UK shed some light please?
Also, I've just been prescribed Nortryptiline 10mg. Scared to try it but going to give it a shot... I apparently have pudendal nerve inflammation along with incredibly sensitive nerve endings in my vulva and labia possibly due to over treatment (prescribed treatment!) of steroid creams following an infection last year. I'm in constant pain, particularly when sitting for periods of time but also hurts walking. Desperate for some pain relief. I've been in pain since September last year. Considering a referral through GP to Wendy Reid at Royal Free.

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Re: In the UK with some questions...

Post  PainBlogger on Fri Jul 31, 2015 7:49 pm

I got Swanson brand Calcium-Citrate on Amazon. Search 'calcium citrate' and it should be top of the list. And I'm hoping to switch to Nortriptyline on Monday when I see the gp. I've been on Amitriptyline but getting bad urinary retention. Nortriptyline is supposed to be better tolerated (generally, we're all different). Your symptoms sound similar to mine which also started after 8 weeks of steroid/antifungal creams. I have bladder/urethral pain as well. Good luck. Maybe you could report back? Smile

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Re: In the UK with some questions...

Post  WaahwaahUK on Fri Jul 31, 2015 8:12 pm

Hi there. Thanks so much for replying! Is the Amitriptyline helping pain wise? I have heard the same that about Nortryptiline and so asked my GP for that over the Ami as I tend to be quite drug sensitive. Thank you for the amazon recommendation. I'll definitely report back. I'm seeing an osteopath for the pudendal nerve issue but only had one appointment so far. Be good to hear how you find the Nortriptyline. I'm probably going to start it next week if osteopath agrees it won't interfere with his treatment.

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Re: In the UK with some questions...

Post  PainBlogger on Sat Aug 01, 2015 8:21 am

A couple of weeks after upping from 10mg to 30mg I had two really good, almost (unprovoked) pain-free weeks. Then the urinary retention caught up with me and so I was getting very uncomfortable going to the loo and had to reduce back the dose. I'm going to start being stricter with diet too. I've already cut out obvious bad food/drink (caffeine etc) but am going to watch my oxalate intake more closely. The only trouble with trying more than one thing at once is if there's improvement it'll be hard to know which strategy helped. But I figure if I'm better I'll just stick to them all!

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Re: In the UK with some questions...

Post  sailor_moon on Sat Aug 01, 2015 9:01 am

I am from australia, here we can get a product called Citracal, which has been the only calcium citrate that I can find....not that it has made any difference.

I would love to ask you how you found out that pudental nerve is the cause of your problem and also what your symptoms are?
Do you suffer inflammation on your vulva, is it red and inflammed?

I have been suffering for 2 years and 3 months now... I suffer extreme itching, burning and bad inflammation that wont go away. The more active I am the more irritated I get. I recently had laproscopy surgery to see if there were any internal causes for my problem...apart from endometriosis which wasnt anywhere near the vulva my doctor found not much else, other than my bowel is too long...but I would have had this all my life. They put my back out really bad while moving me, I now suffer nerve pain on my left side whenever I sit. This used to be on and off occasional but now it is constant.

I have had every test and tried so many drugs,even had 2 biopsies which only showed chronic inflammation. I do have low estrogen and progesterone and Polycystic ovaries confirmed by ultrasound and a blood test....but no treatment as of yet as my doctor had to wait til I had surgery to rule out physical causes before he put me on meds. I am on Lyrica 150mg and it does not do anything except take the edge of the real bad burning...still burns though.
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Re: In the UK with some questions...

Post  WaahwaahUK on Sat Aug 01, 2015 12:18 pm

Hi PainBlogger thanks for the reply. I'm also trying to eat low oxalate or at least avoid high oxalate foods. I've tried so many things over the last few months - coconut oil (ingested), vitamin D, liquid iron supplements....Honestly can't tell what flares me. I had a few slightly better weeks during which time I went on holiday and ate what I wanted and drunk alcohol and felt fairly good still...so to me I'm not convinced diet is helping me. I eat healthily but am trying not to get too obsessed...it's hard. I'm going to give the Nortriptyline a go. Be good to hear how you find it if you get it on Monday?

Hi sailor_moon. I can't be 100% sure the pudendal nerve is the only cause of my problem but it seems to be linked. My history- I had thrush, followed by a skin infection last year and was treated with countless thrush meds, anti fungals, steroid creams before being swabbed. Got swabbed and was given antibiotics. Swabbed again and the skin infection had gone but I was still in agony. More steroid creams prescribed! Had months of barely being able to walk it was that painful. Burning all over my groin, down my thighs, and particularly sore on my vulva and labia. After several months and two gynaecologist appointments (both useless, both saying I should get some lube and have sex with my husband and it'll be fine) I went to see an osteopath. I have back problems that have been ongoing on and off for years and usually chiropractor treatment sorts me out but it wasn't helping. I was getting cramping all down my left leg, burning toes, sore knee, and on same side (left) my labia aches constantly and my vulva burns. I binned the chiropractor treatment and found by recommendation an osteopath. He took a full detailed history of my pain - more than any gynaecologist has!! He then examined me. He thinks my pudendal nerve has been compressed or is inflamed because of how tight I have been holding myself since the initial infection. He also said it may be now that my nerves in the vulva and labia are firing off all the time because of all the treatments that irritated them over some months. So that's where I am now. To be honest I trust him over the gynaecologists as he is so thorough. I've just recently had some blood tests as I felt my hormones were all over the place but nothing significant has come back on them. In answer to your question about inflammation - yes, it was inflamed for a few months. But it isn't so much now. No redness. Occasional itching but it's almost like a burn itching as it heals sort of feeling. Not an itch I feel compelled to scratch. Though it burns like crazy. I use vitamin e oil an organic one and it's the only thing so far that has soothed me. I also like you find the more active I am the more it burns. Though walking has helped me on and off when I can manage it like walking the dog etc. I'm so so sorry you've suffered so long.... I've been like this since September and I know how draining chronic pain is. Have you had your pelvis looked at? I truly think pelvic issues can play a big part. I can feel my pain responding to the stretches I've been given to do. It's freaky. Can I ask how your pain started?

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Re: In the UK with some questions...

Post  sailor_moon on Sat Aug 01, 2015 12:41 pm

It is hard to say what set mine off as so many things happened all at once. First off I came off the pill after 8 years. Then I got what was thought by the doctor to be bacterial vaginosis. ..though the swab test was negative the antibiotics he gave me cleared it up. I also got diagnosed with a cyst on my ovary that went away when I got a period.

A month and a half later I got laser hair removal and used a feminine wash....A week and a half later bad itch, redness and burning returns. I also got an extremely painful period that was ridiculous. I use the same antibiotics again, they don't work.

long story short with 14 doctors in 2 years-

Try thrush treatments, they don't work. Try steroid creams, they don't work. Get biopsies, they don't show anything else but chronic inflammation. Try every cream known to man, nothing works. Try various antibiotics. Try long term oral antifungal. Probiotics, naturopath ect. Nothing has worked.

been seeing my most recent doctor for almost a year. He did hormone tests that showed low estrogen and progesterone and PCOS. He didn't want to give me any hormones until I had laproscopy and hystoscopy to ensure there was no endo or other issues for my discomfort. If he were to give me hormones and I have had endo, which I did! Endo grows and feeds on estrogen so I would have had even more problems! Hospital caused so many problems and I ended up having to wait 9 months for surgery!!! Was meant to be within 3 months but due to stuff ups and my op being cancelled 3 times it took so much longer.

I see him in 2 days time for the latest go - to plan....If he has a plan!

It's ridiculous. ..right now all I want to do is scratch my vag off the itch is insane...

Another thing...it's worse before and after my period. When my period comes the itch goes away n gradually comes back when my period lightens and goes. But since my period finished a week ago it has been constant hell!
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Re: In the UK with some questions...

Post  PainBlogger on Sat Aug 01, 2015 1:04 pm

I didn't find the gynaecologist all that helpful either. First she gave me lidocaine ointment 5% which burned and took ages to cause any numbness. Then lidocaine gel 2% to use at night for 8 weeks which helped a little (after 10mins burning) but didn't 'break the pain cycle'. I also had the 'use plenty of lube and you'll be fine' comment. Except she said Vaseline...

I've found the care I've had from a specialist physio much better as I don't think gynaecologists really look at the full picture of dermatological, neurological and PFM involvement in vulval/urethral/bladder pain. Also I'm now seeing a pain management consultant and he's the one changing my meds from pregablin (which hasn't really helped) to the tricyclic antidepressant group of drugs and, if those don't work will try duloxetine or even a nerve block (but not pudendal as he doesn't think my symptoms all correspond to that nerve). I'm also having acupuncture. The non-NHS side costs a fortune, but I feel too unwell to spend money on going out or on holidays.

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Re: In the UK with some questions...

Post  WaahwaahUK on Sat Aug 01, 2015 1:08 pm

Sailor moon - I find the itching I get when I do get it is worse often before and then after my period. It's a different sort of itch as I said though. Ovulation seems to make me feel more pain anywhere in my body too. I have really heavy periods and have had a cyst on my ovary in the past that was drained.

It's so awful to read how many things people get put through with no real evidence to prove its the right treatment for them sometimes... I wish I had never been given all those steroid creams I'm sure they've made my skin hyper sensitive.

I hope your appointment gives you some answers and a plan you're happy with. I know it sounds corny but please remember you're not alone. There's people out there who do understand. Including lurkers on this forum (of which I was until yesterday). I actually think this forum is amazing. I wish more people would come out and post.

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Re: In the UK with some questions...

Post  WaahwaahUK on Sat Aug 01, 2015 1:12 pm

PainBlogger - the first gynaecologist I saw said she wasn't an expert in vulval pain...but was sure some lube and trying not to think about it would help...!! Even my GP was horrified by that and he admits he knows nothing about these things either!

I'm hoping to see someone like Wendy Reid at the Royal Free but I think she only does private work so it'll cost me. But I also am not spending much on going out.

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Re: In the UK with some questions...

Post  PainBlogger on Mon Aug 03, 2015 11:36 am

Hi Waahwaah - I saw the GP today and got a prescription for some nortriptyline tabs. So, from this evening, I'll substitute the amitriptyline I've been taking for 10mg nortriptyline and, assuming no intolerable side effects, will gradually increase the dose over a few weeks. I'll try to remember to post on here in a couple of weeks with how I'm getting on Smile

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Re: In the UK with some questions...

Post  WaahwaahUK on Mon Aug 03, 2015 6:53 pm

Pain Blogger - Really hope the Nortriptyline helps! Would be great to hear an update from you as and when. I'm going to start mine at the weekend. I saw my osteopath again today and he said it won't interfere with what he's doing so going to give it a go myself. Good luck!

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Re: In the UK with some questions...

Post  PainBlogger on Fri Aug 07, 2015 8:19 am

Waahwaah- I thought I'd just provide a quick early update on the nortriptyline. Obviously it's too early to judge effectiveness - I have actually been having a reasonable week (unprovoked pain not having gone over 3/10) but from experience I know that's likely just random, especially as I'm still only on 10mg/night. I thought you might find it useful to know that the first night I took the nortriptyline (I took it about 8pm) I had quite a bit of trouble sleeping and felt quite, not agitated exactly, but hyperalert. Of course, that could be as I'd dropped the amitriptyline (which usually gave me a great night's sleep). But, anyway, after the first night I've had no more of that and have slept fine. I also felt a little queasy after the first dose but that had gone by the next day too. We're all different and you may not, of course, get those symptoms. But, if you do get any adverse effects, hopefully you'll find they wear off quickly.

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Re: In the UK with some questions...

Post  WaahwaahUK on Fri Aug 07, 2015 7:19 pm

Hi PainBlogger I really appreciate your update. I'm about to start it tonight and a bit scared so really interested to hear your report. I'm either going to take it tonight or tomorrow first dose. I'll see how I feel and update here in a few days.

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Re: In the UK with some questions...

Post  WaahwaahUK on Tue Aug 11, 2015 8:27 pm

Just a little update if anyone checks in on this post. I've been taking the Nortryptiline for a few days now. Thought it had stopped the burning but unsure now...having quite a bit of pain anyway this week following an osteopath appt where he really worked on my pelvis so feel like it's all just protesting currently. Side effects ok so far....slight nausea, some headaches (coincidence maybe), that's about it. Going to keep on it for as long as side effects are minimal as I'm sure it can take some time. Only on the 10mg currently.

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Re: In the UK with some questions...

Post  PainBlogger on Wed Aug 12, 2015 3:58 pm

Hi Waahwaah, I think it's really difficult to judge how much benefit any drug for nerve pain is having (with the exception of opiate-type drugs) until you've been on it for several weeks if not two or three months. As with the side effects, one can never tell what's coincidence over a shorter period of time. So, hope you can hang on in there with it. Hopefully the side effects will gradually wear off also. I'm going to increase my dose to 20mg tonight and see what happens. It's frustrating that trying new drugs/doses seems like such a lottery (i.e. will I get side effects? If so, which ones? Will it help? etc), doesn't it?!

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Re: In the UK with some questions...

Post  WaahwaahUK on Wed Aug 12, 2015 6:40 pm

Hi PainBlogger - thank you, that sort of reassures me. I've read stories of people noticing their pain virtually disappear after one dose! But I think how long I've been in pain, that just won't be me.... I know it can take some considerable time so I'm sticking with it. Saw my osteopath again today. I can feel he's on the right track but its soooooo hard dealing with the flare ups it gives me. Not to mention bloody awful having someone prod your groin and pelvis repeatedly! But he is incredibly knowledgeable and I just feel a confidence in him over any other specialist I've seen so far....Going back to the drugs, I was so tearful yesterday. But I think that's more because I had one day at the weekend where it didn't hurt to touch like I had been burnt down there. I think I realised then just how much pain I'm in daily. So we'll see. I'm really hoping it will eventually help my nerves settle as the osteo treatment does its thing.
Hope you're finding the new drug ok for you, and good luck with the increase. Love to hear how you get on.

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Re: In the UK with some questions...

Post  PainBlogger on Thu Aug 13, 2015 10:48 am

I think taking a multipronged approach is really important. Like you, I've read occasional reports whereby people have found relief after a single dose of a drug or a single session of physio/acupuncture/osteopathy etc. I'm happy for those people, but I think they are in a significant minority.
At the moment I am simultaneously tackling my pain with: medication, physio (including home exercises), acupuncture, dietary changes (low acid and low oxalate, no caffeine), progressive muscle relaxation (http://www.thepelvicfloorclinic.com.au/buy-cd-or-download), mindfulness (http://www.breathworks-mindfulness.org.uk/mindfulness-for-health-reader-resources - you can download the audio tracks for free. I'm working through the book also), oilatum in the bath, no fragranced washing products/sanitary products and calcium citrate tablets.

Even though my pain is not yet as consistently low as I want it to be, I am an awful lot better than I was a year ago. I think for a real breakthrough, having a consistent period of time with minimal pain will break the pain cycle and the nerves can have a chance to normalise. Hopefully you'll find the nortriptyline can calm down the nerves and the osteopathy can normalise the muscles/joints side of things and the two approaches will be better than the sum of their parts. If that makes sense.

I know what you mean about having someone prodding about around there. It is a really awkward feeling. In a way though, I don't find it as embarrassing as when I have to verbally explain my symptoms.

If you are not already doing so, you may find it useful to keep a pain diary. I note down at the end of each day or the next morning my average pain out of 10 and maximum pain out of 10 (could also do minimum, I guess). You could note down any significant events also like medication dose increases, when you have osteopath appointments, anything out of the ordinary that might have contributed to better/worse days. When you have a few weeks or months of data you could even do a rough graph. That can be helpful to take to appointments to show a record of pain levels.

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Re: In the UK with some questions...

Post  WaahwaahUK on Thu Aug 13, 2015 5:19 pm

I'm doing a lot of the same things you're doing. And funnily enough when I saw my osteopath yesterday we talked about me doing a pain diary so that's on the agenda now too. I do find I'm in a lot of pain after the appointments but its a different sort of pain. More of a free pain, sort of like the muscles and nerves are going a bit crazy but doing more what they should be doing. Hard to describe... I think mentally its easy to get into the mindset that you'll never not feel pain. It's so hard to try and counter that when the condition is supposedly rare and can be for such a variety of reasons... I haven't tried calcium citrate yet but keep meaning to. I am trying to avoid high oxalate foods generally. I was convinced there was a hormonal link but my blood tests don't seem to indicate that. Possibly when they change my body feels pain more I don't know... Anyway it's really interesting to hear from you. Thank you for taking the time to post.

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Re: In the UK with some questions...

Post  Fielder on Sat Aug 22, 2015 5:59 pm

WaahWaahUK wrote:
I was just wondering re: calcium citrate. When I've looked online it seems to say calcium phosphate or carbonate as opposed to citrate. Anyone in the UK shed some light please?

I'm in the UK too and am using this pure powdered calcium citrate by the 'Now' brand sold via the UK amazon site: http://www.amazon.co.uk/Calcium-Citrate-100%25-Pure-Powder/dp/B00QIJI324/ref=sr_1_11?ie=UTF8&qid=1440266218&sr=8-11&keywords=calcium+citrate

Sorry if this info is rather belated, but thought I'd post anyway.

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Re: In the UK with some questions...

Post  PainBlogger on Sat Aug 22, 2015 7:21 pm

Good to know there's an alternative form available, Fielder. Very Happy

To update on my increasing nortriptyline dosage schedule, I'm now a few days into 30mg/night. Still finding it tolerable, though I have definitely been feeling more tired since going from 20mg to 30mg. Hopefully that'll wear off. As far as pain goes, my maximum unprovoked has been maybe a 3/10 in the last couple of weeks with a couple of days on a 1/10 average. Still too early to know if that's just a fluke but I thought I'd update anyway. If the fatigue wears off in the next few days I'll up to 40mg/night.

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Re: In the UK with some questions...

Post  WaahwaahUK on Sun Aug 23, 2015 4:44 pm

Thank you Fielder, appreciate the info! I haven't gotten around to getting some yet so it's still totally relevant.

Thanks for the update pain blogger. I'm still on 10mg. I had some side effects in the second week of a really painful jaw and sore tongue, and crazy dreams! The jaw pain has eased. Dreams still crazy. I'm so sensitive to new meds though. As far as pain, I'm not really sure at the moment but am taking into account that I'm on a really low dose and it's early days. I can't up my dose until I see my GP again in a few weeks but will be looking at upping to 20mg I think. A 3/10 sounds so promising! I'm really pleased for you and hope it continues. Please keep me posted.

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Re: In the UK with some questions...

Post  Fielder on Mon Aug 24, 2015 12:05 pm

Hi PB and WaahWaah,

If I don't use the calcium citrate, I make sure that I drink some skimmed milk with my food at each meal....I understand that the calcium in the milk binds with the oxalate.  (I choose organic as I want to avoid any unwanted hormones in the milk - Bought some organic skimmed milk powder which I mix up and add to things, e.g. soups, which makes things easier http://www.amazon.co.uk/Organic-Skimmed-Milk-Powder-1kg/dp/B00B6ABIJA/ref=sr_1_5?ie=UTF8&qid=1440431198&sr=8-5&keywords=organic+powdered+milk  It does tend to go a bit lumpy though, if you don't mixed it up thoroughly.)

It's early days, but fingers crossed it will eventually help to ease the burning pain.

Best wishes,

Fielder

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Re: In the UK with some questions...

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