How I cured my lifelong BV and Vaginitis

Note: This voice recording & blog post is 100% written by a real customer, Amanda. It is 100% authentic and has not been edited or modified in any way.

 

The Real Invisible Disease 

My name is Amanda. I am a chef and stay at home mom to four boys. Prior to deciding to be a stay at home mom, I was a Research and Development Chef with a degree in Culinary Science. Later, I started my own business developing recipes and food photography. It was my background in food science that really helped me on this journey understanding healthy bacteria, microbes and pH. 

I want to talk about a condition that is very personal. It’s a condition that is not easy to open up and talk to everyone about like you can with other health issues. This condition is Vaginitis. I have had Bacterial Vaginosis most of my life and after the birth of my babies I also developed Aerobic Vaginitis. After learning I had BV it took me almost a year of trial and error to figure out how to cure it. Now I feel extremely passionate about the topic and feel I need to give all I learned back to the women who are suffering from this by sharing everything I learned in the process.

I lived with BV symptoms so long I thought it was normal…

I believe I’ve had BV most of my life. So much so, I thought it was normal to have a “smell” and discharge in my underwear every day. My underwear always had a crust of discharge, but I never gave it much thought. I didn’t know any different. So I never wore panty liners I just changed my underwear daily. In fact, I didn’t know what a healthy vagina was so all the symptoms were the norm for me. I was like this all through middle school, high school, and college. I remember my clothes smelling, or even being able to smell myself. I would notice it especially if I bent down so I would bend down differently to avoid exposing the smell. I did feel that sometimes other people could smell me. I thought that’s just how I was. Even more embarrassing I remember dogs would always try to stick their noses there because I smelled so bad. Once I heard someone say their dog only does that to girls that don’t take care of themselves “down there”. So I thought to myself what was I doing that wasn’t taking care of myself? I showered daily, changed my underwear daily, wore cotton underwear etc. I was doing all the right things. Besides the common belief is they you don’t do anything to that area, right? You wash with water there and not even soap! felt ashamed because it wasn’t that I didn’t take care of myself. 

At the time, I didn’t really have anyone to talk to about this with even if i did know something was wrong. I maybe had one friend at the time that was more open. The odor I had was 10/10 bad.

Married life

Fast forward to married life, I remember apologizing for smelling “down there”. My husband fortunately never made me feel ashamed but I remember feeling unsexy and embarrassed instead of in the moment. We waited until marriage for sex and fortunately we had sex a lot! Twice a day, but at least every day. I had no idea anything was wrong until sex started hurting. At one point, I had vaginal cells peeling and it irritated my husband too! Having cleared my infection now and looking back I didn’t realize how much BV was making sex not feel as good! The symptoms didn’t stop us from being intimate, so I never thought there was a problem let alone go to the doctor. To make it even more complicated, I almost always was postpartum and nursing so I chalked up the pain during intimacy from breastfeeding later on. So it wasn’t until after my third baby I decided to look into it. That was 8 years after we got married!

I remember going to my midwives and they swabbed me just in case. That’s the only way I found out I had BV.

A long health journey

People would describe me as the happiest girl and the most positive person. Once I found out I had BV it started to deeply effect me. I couldn’t get it to go away. What was wrong with me? I became obsessed with fixing it. It led me on a big journey. I found out I have SIBO and MCAS (Mast Cell Activation Syndrome). The doctor said my body has an issue with managing bad bugs in my body and I easily get “hollow space” infections like in my gut and vagina. I attribute it to years on and off antibiotics as a young girl as it was used as a panacea for simple things like acne, which I also struggled with. The vaginitis infection and MCAS made me wake up with chronic fatigue and muscle aches.

Vaginitis is a condition where you look healthy on the outside, but you don’t feel your best on the inside and for me it effected all areas of my life. It affected intimacy with my husband, which I value, my confidence and how I felt in my body because the vaginal infection made my midsection, face and hands swollen. I was uncomfortable in my clothes and how I looked liked in the mirror.

Yes, a simple vaginal infection gave me full-body inflammation…

As you can see below of my before and after photos. The top photo was at the height of my MCAS and raging vaginitis infection. Below is me after everything was more under control.

Now I know I have a vaginal infection when my MCAS symptoms flare (for me that’s food sensitivities, edema, redness on my face, stuffy nose and runny eyes). For women MCAS can cause dizziness like POTS, make you flush, give you itchy skin, and in general give you reactions to day-to-day things that most people wouldn’t think twice about.

Limited help

I felt like there was no one to help me.  I had MCAS which isn’t generally recognized by medical doctors and BV which the OBs and midwives I was seeing couldn’t figure out. They had no knowledge of vaginal pH and how that indicates an infection, with one provider telling me “pH doesn’t mean anything”. They were used to the type of BV that would go away with one course of antibiotics. However, in my personal opinion, I highly doubt there are many cases of BV that goes away that easily.

I tried so many things to fix it.

I would test positive for BV and then, after a course of antibiotics, the test would come back positive for AV. My providers were stumped. I was “too young” to have AV according to them and the providers gave up and stopped answering my calls (I had known these providers through all my pregnancies; I was heartbroken). 

As you can see from the two reports below taken only a couple weeks apart. The first test was positive for BV and the second one positive for E. Facaelis.

So I had to learn how to treat both and learn my personal symptoms to each one so I could treat it at home with NeuEve and other remedies without having to rely on doctors or repeated tests.

All this suffering led to me to a really amazing Infectious Disease doctor with over 40 years of experience, he was taking limited patients at the time but my case piqued his interest. After our first few meetings, he did some research and found NeuEve. At that point, I told him I would try anything. I had seen NeuEve through online searches but when you’ve tried everything you don’t know what’s the next best way to spend your money. So it really took his recommendation to try it and I am so glad I did. 

It took me an entire year after finding NeuEve to stop my BV and AV from coming back. I had to find a routine that worked for me. I think because I have MCAS and SIBO it made it complicated for me. However, NeuEve changed my life. It gave me what I was looking for which was a way to manage BV and AV without relying on antibiotics as I would get BV or AV after intercourse.

Here was the KEY that I needed to unlock (and a the probiotic capsule recipe I used)

My doctor told me pH for vaginal health is really important as well as Lactobacillus Crispatus. He said that was THE most important bacteria for vaginal health. I knew that but no doctor had ever told me to monitor my vaginal pH using pH strips before. I started monitoring my pH nightly and then daily. Keeping track of what caused my pH to raise above 4.5 and what made it lower. This gave me a list of what treatments worked and what didn’t. When it lowered after certain treatments like NeuEve and vaginal probiotics I knew I was on the right track and that’s when I started to heal. 

Once I cleared my infection, I lost almost 10 lbs of inflammation over my whole body. I looked like myself again. It’s no wonder women suffering from BV are so miserable! It’s not just “BV” it’s full body inflammation in response to the infection. There are lots of mast cells in the vagina that’s why I was having all kinds of reactions to things.

After my first NeuEve suppository, my pH lowered below 4.5. I was ecstatic! My doctor said pH is really important for vaginal bacteria to grow. My pH would stay down for a day and then rise back up by night. So I would use BV Clear Finisher at night and the next morning when my pH was still low I’d make a vaginal probiotic capsule using this recipe.

Vaginal Probiotic Capsule Recipe

00 vegetable capsule

10 tiny scoops of Epothex L. Crispatus powder

1 Lifespace for Women’s probiotic capsule 

A tiny sprinkle of ascorbic acid

I would insert this with a vaginal applicator to get it as close to the cervix as possible (this was really important or else it won’t work to cover the whole area from the top). 

The first time I did this my pH lowered and stayed lower for longer. The next night I did another BV Clear Finisher and next morning another vaginal capsule but this time with 2 extra scoops of L. Crispatus. My pH lowered and stayed that way after that. I learned to key was more probiotics since I had been on so many antibiotics and had gut issues my vaginal microbiome really needed replenished which NeuEve helps to do in combination with probiotics.

I became obsessed with tracking my vaginal pH and also trying different things. I tried vitamin c tablets, prebiotics, boric acid, herbals and I always came back to NeuEve as it would effectively clear the BV every time. 

From there I moved on to using NeuEve once a week to maintain. I continued using the vaginal probiotics every time after intercourse as well. This worked until I had my fourth baby.

I had another AV vaginal infection immediately postpartum. I believe due to the low estrogen from breastfeeding and my husband tested positive in his semen for the same bacteria I had (Enterococcus Facaelis)! My doctor said that if Enterococcus keeps entering my system it could cause everything to be dysbiotic and would explain why sometimes I have BV too. When I’m not breastfeeding my vaginal ph stays in the normal zone more easily. I tried taking prescription vaginal estrogen and it ended up feeding the E. Facaelis and made my symptoms worse. That’s why NeuEve is a good non-hormonal option for me. I also started taking NeuEve Vaginal Probitoics orally. I worked with my Infectious Disease doctor to clear the AV infection because it was so aggressive. I did need antibiotics for it. During antibiotic treatment my pH did go back up but using NeuEve probiotics after treatment brought the pH into a normal range. I combined NeuEve probiotics with another probiotic that has L Crispatus LBV88, L Rhamnosus LBV96, L Gasser LBV 150N and L Jensenii LBV 116. Day by day my ph lowers until it reaches 4.5. Now it is holding steady. Once my husband is treated I believe we’ll be clear of all this and I can go back to using NeuEve for maintenance.

So if you’re getting symptoms after intercourse it might be best to test both of you as you share a microbiome. 

To make matters trickier we learned my husband was harboring the AV bacteria! As his semen tested positive for E. Facaelis! We are still working through this part of the puzzle. My doctor thinks he may have chronic prostatitis and the treatment time for that is many months.

This is my husband’s report.

Now I was still using NeuEve to clear the BV bacteria however my pH would lower then rise by the mid-day. My symptoms would flip to AV. So then I would work to treat that. I have yet to try AV-Nil but I’ll definitely have to and report back.

Testing

I wanted to mention, for those struggling out there, that the way vaginal swabs are collected make a big difference in what bacteria show up on a test. Taking a swab inside the vagina versus a provider using speculums and swabbing the cervix has always yielded different results for me. It’s also important to keep in mind testing and under what conditions are you testing. For example, when my symptoms were at their worse is usually when I wanted to test. However, I would also test when my symptoms were good. Sometimes there were still some bad actors when my vaginal symtpoms felt under control! The. I started to understand what symtpoms lined up with which bacteria. When my symptoms were under control and better using NeuEve and probiotics I also tested and it’s when my results came back negative for the first time. I cried! It was amazing, I’m not sure the nurse on the phone understood how much that meant to me!

Diet

I also maintain a very high fiber clean diet called the Specific Carbohydrate Diet as I personally have gut issues. The vagina and gut are very intricately related and I can attest to that. When I have complete bowel movements my vaginal pH will go down.

In conclusion 

So as you can see I have gone through a long journey with BV and AV. My prayer is that I could help even one person suffering with this to find some relief especially when there is such a shortage of good doctors out there who are truly knowledgeable to help. Looking back I wish I could tell the myriad of providers I saw for this about vaginal pH and how important it is. I’d tell them about NeuEve being an amazing non-antibiotic choice. I would also want to tell them how important particular brands and even strains of probiotics are to correcting the vaginal microbiome.

During my time going through this, NeuEve was there for me when doctors were not. NeuEve was able to answer medical questions as well. They were there for me when I felt the most alone in this journey! I hope they always offer that service as it encouraged me to continue supporting them.

I will always be thankful for NeuEve and the gap they have filled in the medical system. I will continue telling everyone about what NeuEve has done and how they’ve helped me to heal from this very real yet invisible disease.