I deemed it fit and made a personal choice to finally tell my full story. Since this is a public post, certain personal details will need to be omitted, so please understand. However, I’ve decided to write certain things publicly, even if they are difficult to talk about, because I want to inform others so they know what to look out for if they go through something similar. I want to prevent other women from going through the same if I can. The story is long, but please take the time to read it, it may save you months or even years of pain and suffering.
**Disclaimer: I am not a medical professional, so please do not take my words as accurate medical advice. I will only tell you what worked for me and my personal experience.
My story today will be about my health that suddenly deteriorated at the end of 2015 and most of 2016. I will be speaking frankly about gynecological health, sex, and vaginas so if that makes you uncomfortable, please stop here. I know people get up in arms when the topic of lady-parts come up or sexual health, so if that isn’t for you, again stop reading here. This story needs to be told though. So many women have gone through what I have been through, and there else a chance that I’m not out of the deep end yet.
Women need to speak openly about their health struggles. We are often disregarded as being crazy hypochondriacs who are too delusional to know whats going on with our bodies. There is a long history of this that goes back centuries. Do the research, their is evidence of this spanning so many years and the same practices still go on today. Doctors and other medical professionals can be dismissive of women and their chronic symptoms. They often think we are making things up or we are too weak or sensitive to minor pain.
Well guess what? Women are in pain more than men, plain and simple. From period pain monthly, pregnancy, endometriosis, complications from hormonal medications like birth control, yeast infections, being more prone to UTI’s and bacterial infections of the vagina, and much more, women really have it rough.
Why is this not acknowledged by so much of the medical community?
Women are often misdiagnosed or get pills and creams thrown at them to “shut them up” if you will. They often think we don’t understand our own bodies and that they know better than we do. This is not all doctors, but frankly it seems to be a lot of them. Sadly, we often have to take matters into our own hands, which is exactly what I had to do this year to basically live.
So let’s get into what happened to me.
Why Does it Hurt?
I noticed some odd vaginal burning and irritation that I never felt before in the middle of November 2015. I thought it had to do with my period or something, so I ignored it. I was used to that type of stuff. I am sexually active as well, so irritation happens. I, however, practice safe sex, always tested, same for whom I’m sexually active with. There is honesty, trust, and though you never know what can go on without you knowing, I was sure infidelity was not at play. Those assurances were confirmed by more subsequent tests in the coming months after finding out that something was up with me, so everything was clear with those involved.
I also much mention that I was at the time on birth control pills, a generic form of Ortho-Tricyclen called Trinessa. It is an estradiol-norethindrone hormonal pill pack, which remember that as it will play a role in what I later learned to be problems that were directly linked to these pills and more. Like a bad combination and cause and effect. I was on that brand of pills for three and a half years, and well into this unfortunate saga.
The pain seemed to come and go with my menses. After each cycle the pain would dissipate, then come back full force the week before I started my period again. I really did not know what I was going on. I had spotting between periods, which I never had in the past, and I started waving the red flag.
I finally went to urgent care in January of 2016. I had lost my insurance at the end of the year and did not have my regular ob/gyn anymore since she did not accept my new insurance, so I had no options.
I thought I had a UTI. And going in the clinic, that’s what I suggested.
Lesson One - Do not, I repeat, DO NOT go into any doctors office, ER, or urgent care and ‘suggest’ what you think you have. They will either dismiss you completely or go on your hunch alone and misdiagnose you.
This is what happened to me.
So they tested for a UTI, and that’s it. The doctor looked at my urine sample and determined that the high white blood cell count equaled bacterial infection. I realized later that this result was not determined by a lab diagnostic (I will get back to that in a moment). I was then given a prescription for Bactrim (Sulfamethoxazole), a routine antibiotic, to take to rid me of the infection. I was in and out of urgent care in about 20 minutes, too quick honestly for any comprehensive care.
I urge women not to go to urgent care or and ER if they can help it when dealing with vaginal pain or infections for this reason. You will not get the care you need.
I took all the antibiotics without any immediate adverse effects. However, the pain came back worse than ever.
Then I got a call from the urgent care facility that infuriated me and led me down an awful path of mystery.
They called me to tell me that they analyzed my urine sample further and did not find any bacteria that would signal that I had a UTI. I got this call a week after completing the antibiotic regimen.
I took the meds for no reason.
The pain was back and nothing changed.
Seeking a Second Opinion
After another month of the symptoms coming and going, I found a new ob/gyn. He seemed nice upfront. I won’t share his name for privacy reasons, even though I am very angry about how the saga unfolded thereafter the initial visit. As of now he is currently retired (November of 2016) so hopefully he will not hurt any more women with his gross incompetence.
I mentioned to him everything that was going on with me. I was open and honest about my sexual history, activity, leaving no stone unturned. I have to say, being a young person (I was 24 at the time of this situation), I find that it is an extra hurdle to convince your doctors that you have a handle on your sexual health. I understand that doctors do need to take extra care with young people to make sure we are being safe, but I also expect that I won’t be judged by appearances or pre-dispositions.
Sadly, I feel I was judged.
Pre-diagnosis - Bacterial Vaginosis
Without getting back the results of my PAP, the doctor determined on his own by my apparent symptoms that I had BV. Actually he didn’t even say anything about BV, he just told me to use this prescription cream called Metrogel that he would send to my pharmacy and in seven days I would be fine.
I repeat, he did not tell me exactly what he was treating.
The man literally told me basically, “try this and we will see what happens, come back for a follow up in two weeks.” He did not check any samples under the microscope in the office (which I found out later could be done on the spot to check for simple things like bacteria and fungi without needing to wait a week for lab tests - hmm sounds like incompetence and a little bit of insurance scamming)
So I’m using this suppository cream for 7 days, by day 6 the burning came back full force. Also note that I had to pay full price for this medication ($129) because my insurance did not cover it.
A few days after that I get a call from the doctor about the results of my PAP.
ALL CLEAR, NO INFECTIONS OR STDS TO BE FOUND.
Oh and I also got blood work done for HIV, yes I went that far too. All clear.
So for the second time I took a medication without comprehensive test results for no reason and I spent over a hundred dollars on it.
I was livid.
I was back in the office a few weeks later. More tests were done. I was like a little lab rat at this point. He tested for everything (he claimed at least, that will come back to bite me later) and in four months I had about 3 PAP smears done, all with clear results. The doctor clearly did not know what to do or what he was doing. He threw another cream at me, an anti fungal one, which worked briefly but then stopped working when the regimen had ended.
I must mention that this doctor was primarily an obstetrician, so I do not think he really had a handle on vaginal infections.
I made several attempts to see specialists, but none of them would accept my insurance, Metro Plus Bronze. If I wanted to see them, I would need to spend thousands out of pocket. So a big screw you to the health coverage in America because it’s really one huge rip-off, but I won’t get into that now as it’s a much larger issue.
Being My Own Doctor?
Eventually I realized that I needed to take matters into my own hands. I did tons of research regarding my condition, combed online forums for information, and reading about the countless other women who were going through the same thing. I made the grim discovery of Vulvodynia, the unexplained pain of the vulva not caused by an active infection. Mystery pain, basically.
Would I have to come to terms with such a diagnosis?
I came to the doctors office again and mentioned this. He prescribed me a numbing cream. I was never actually diagnosed with it, and I refused to just give up and accept lifelong unexplained pain.
My life was basically in shambles at this point. My self esteem was in the toilet. I felt terrible about myself. My relationship was directly effected and deteriorating. I refused to see people. I felt sick all the time. Going to work everyday was a struggle. Some days it hurt to sit down, or hurt to walk. I had to constantly pretend I was okay. I would often go home and cry and be completely debilitated. I could not go on like that.
For those of you out there that have dealt with or are dealing with chronic pain, just know that you matter and you are not alone. Your pain is valid and real. Do not let anyone tell you otherwise. Your inability to function is warranted, and no one is allowed to shame you for that.
I had to come to grips with the fact that my life was changed, and in order to overcome, I had to look at everything from a different angle. I decided not to give up.
I marched back to the doctors office and demanded copies of all the tests they ran on me so I can read them through myself.
I found a sparkle of hope in the dark cloud that was my life currently - results from a urine test that uncovered a key clue into what was going on with me that was overlooked by the quack doctor.
Yeast - Abnormal
The results of a urine test I had done was flagged for yeast. Yeast is a fungus that lives in all of us. It’s a natural part of what keeps our gut and vaginal flora regulated, however when the balance is lost or disrupted, candidasis (candida is another word for yeast) can occur.
Long story short, I basically had vulvovaginal candidasis the whole time. And the doctor never tested for it directly because he assumed my issue was bacterial or sexually transmitted which it wasn’t.
Before I fully realized this, I went back for another two visits. I accosted the man, telling him how he missed this key item in my test results. At this rate my symptoms were full force, discharge, abnormal bowel movements, frequent urination, burning sensations, basically all the symptoms you could possibly have due to candida.
But despite this, things got worst and he still managed to ruin my body more.
On the first visit I was given a vaginal ultra sound. Found nothing with that. I spoke to him about the possibility of my birth control pills causing my flare ups. He didn’t seem to have any understanding of that even though I had read so many articles online detailing that birth control may have adverse effects on vaginal flora. I even printed the articles for him to read! He seemed to disregard my findings though he was proud that I did my own research? That’s supposed to be his job not mines! He wanted to put me on the birth control Lo-Loestrin FE, but I declined. I did not trust him. It’s the estradiol (synthetic estrogen) that’s the problem, so lowering the dose isn’t going to help anything, in fact it could make it worse.
On the second visit, the doctor did another pelvic exam, I must have been on my fifth one in only four months. The only thing he had to go by was my symptoms.
Again, despite what I told him about the candida, somehow the man jumped to Trichomonas, which is another sexually transmitted disease. He insisted that because of the discharge it just had to be an STD. Mind you, I explained that I was confident about my sexual safety to him several times but clearly he did not believe me.
He then threw more antibiotics at me, Doxycycline and Metronidazole. He claimed I had to have both candidasis and Trich simultaneously (what the…?) so he gave me Tetraconozole anti-fungal suppository cream on top of the antibiotics. I was told to take all three at once.
I was desperate, and in severe pain at the point of this visit, so I left the office without further questions.
Lesson Two - Do not ever take any medications without getting comprehensive test results from the labs. Do not ever. I learned the hard way that taking medications on the doctor’s word alone leads to further complications when you are treating for a condition that is non-existent. You may worsen your condition and it may be irreversible.
I became more violently ill than I ever was before. My stomach pain and nausea worsened. I could barely get the pills down daily. I was nauseous and vomited them up a lot. I took a probiotic (GNC 100 Billon Ultra) to help combat the loss of good bacteria while on the antibiotics. It didn’t help enough.
Antibiotics cannot differentiate between good and bad bacteria, so it eradicates it all. But guess what it doesn’t eradicate?
Fungi, and what is candida? A Fungus. So guess who ended up being full body taken over by candida? This woman, me right here.
I developed oral thrush on top of vulvovaginal candidasis as well as intestinal and stomach problems. I could barely keep food down. I lost like five pounds. I felt miserable. I couldn’t get through a single day without feeling both nauseous and like my vagina was on fire. I questioned all my life choices and what I did to deserve this. I thought sometimes that I would die from it, and I don’t mean to sound dramatic, but it just kept getting worse and not better.
A Terrible Realization
I did not finish the antibiotic regimen. I knew it was not helping. It was actually killing me. If I kept going down that route I could have ended up in even more trouble.
I lost count, but I went in for my sixth and what would be my final visit to this terrible doctor. A doctor that mistreated my condition over and over and seemed to not bat an eye. He told me ridiculous things like how I should just take a warm bath to relieve the pain.
Okay, so on this final visit. I showed him my yellow tongue, my horribly visible vulvar “takeover”, and oh on top of that, I had such violent pelvic pain that I really thought I would just keel over in agony. I don’t even know how I made it. And I also had to wait a long time to be seen that day, which added insult to injury. I was literally being internally destroyed by yeast. They seemed to have taken hold on every bit of my body.
He finally casually admitted, “oh yep, you have candidasis”, and he administered a swab test for it.
Wait. Hold on. Roll that back.
So the doctor basically never tested me for a yeast infection. Not since day one. This was not part of his initial PAP test. I know this because upon reviewing the paperwork of the test results from the previous months, there is not candida test listed.
He. Never. Tested. For. It.
I was under the assumption all that time that the test for candida was part of the initial test! So when he told me in the past that all my tests were clear, candida was not a part of that. It was a separate swab he never even administered because he assumed all this time that it HAD to be bacterial. He was playing guessing games with my body!
My life was in pieces for at this point, 6 months because he is a complete imbecile or in cahoots with BigPharma.
So here I am on what was either my sixth or seventh clinic visit, finally having a swab for candida taken. Mind you I never got the results back for this, but I knew that it was candida regardless. It was obvious:
- Antibiotics did not work and only made my symptoms worse.
- All my bacterial infection tests came back clear.
- My urine tested positive for yeast two months prior.
- I had every single symptom of a yeast infection known to man left untreated for six months and allowed to proliferate until I was nearly dying.
Relief in Sight?
I was finally put on the oral anti-fungal medication Diflucan (brand name for fluconazole). I was to take two doses, a single pill once a week for two weeks. I was given Tetraconazole suppository cream again.
I finally began to see results. My candida began to clear. It was a miracle. I reduced dietary sugar, drank more water. The pain became minimal. The nausea began to stop. My appetite began to return. I guess he finally did something right, but honestly? I did all the research to begin with. I suggested Diflucan to him to prescribe to me. I told him that the antibiotics were making me worse.
I did all the work!
I was told to have a follow up appointment, but I was done. I never went back to that doctor. He ruined my life for over half a year. I was very upset. I began to get bills in the mail from him from all his failed treatments ($600 worth). This is on top of the over $300 I already spent out of pocket on his failed medications. I refuse to pay them, and I will dispute them. No one deserves to go through this! This is medical malpractice at it’s finest.
After the treatment that finally worked, I went to a Planned Parenthood clinic to try and get further answers as well as my primary care doctor, which honestly I really wished I went to sooner. The whole ordeal was so intense that I was bewildered with what to do.
Lesson Three - When your current treatments aren’t working and your doctor seems to not understand what is going on with your body, seek out a new one immediately. Do not settle. If you can afford it, perhaps shell out the extra dollars for a specialist, though I know not many people have that luxury. Do what you can, and even go to your PCP regardless if they don’t do gynecology, at least they may know your history.
Lesson Four - Trust your own body. Don’t fall for what a doctor tells you about your body. Do your own research and find out the truth. It may be exhausting, but it’s your body and your life. Do what you can and don’t stop fighting.
So here I am at the end of 2016, which was the worse year of my life so far in terms of health. Not only did this fight with candidasis hurt me physically, but mental and emotionally too. But I still feel like one of the lucky ones. Some women suffer for YEARS. Some women never find cures. Some women never uncover the truth. Some women may even die from complications. Don’t let the medical practitioners victimize you. Seek out ones that will actually help and care about your health and well being. They do exist.
Also do consider naturopathy or a naturopathic health practitioner. I know many people are skeptical about it, but before modern medicine, there was naturopathy, and without it, so many modern medical breakthroughs may have never occurred. All things are derived from nature and there is some truth to natural remedies.
Currently, to combat my candida flare ups, I take coconut oil pills and oregano oil pills daily. I’ve researched countless natural anti-fungals and tried so many, but I think coconut oil is one of the best and has worked the best for me. I also take probiotics and eat probiotic yogurt daily. I also like to drink ginger tea and pau d’ arco tea. I have reduced (but not completely eliminated) dietary sugar and I eat more greens and leafy veggies. I did not go on the candida diet, which also works for some people though its a bit of an extreme change, but I did make some changes to my diet and only indulge sparingly. I hope to improve my diet even more in the coming year.
I’m not out the deep end. Theres always a chance that I could have another flare. I did have one about a month ago, and I had to take another dose of Diflucan. I have one in my drawer in case of an emergency as well. But in the end of the year I went long spans of being infection free for the first time, so it was progress.
It’s not good to take anti-fungal medications often, as the fungi may develop resistance to them. This is another reason why I’ve opted to take the natural route. Candida cannot develop a resistance to coconut oil for instance, but in order for coconut oil to be effective, you must take it all the time (preferably after meals.)
It also takes longer for natural remedies to take effect and some are more effective than others, so do your research. I opted for Diflucan only because my symptoms got too severe. To prevent that, I use natural anti-fungals as maintenance.
There was another change that I did not mention earlier that helped me. I switched birth control to a progestin only pill called Jollivete, or the “mini-pill”. Progestin only methods (which also include IUDs and Implants such as Implanon and Nexplanon) do not contain any estrogen. Estrogen is a known trigger for increased amounts of vaginal yeast during a woman’s natural menstrual cycle. Since switching to a progestin only method, my symptoms when they occurred have been minor and less frequent, and through managing my symptoms and preventing them with natural anti-fungals, I’ve been on the road to complete recovery. I’ve been on the new pill since August 2016.
But this is only what worked for me, please seek advice from a medical professional on what birth control methods work best for you. Some people cannot use hormonal methods, and for some it is against their beliefs, so again please do what is best for you.
So yes, my body will never be the same. Having an infection for so long has led my body’s nervous system to be out of whack. I sometimes experience pain, like what feels like a dull burning or pinching feeling in the vulva, without the presence of any infection. This is a common side effect. With time it has gotten better. My body has to basically reprogram itself to not be used to or expect debilitating pain.
More than it ever has been, we all have to be aware of our bodies. With the War on Women’s Health and Reproductive rights, the fight to get complete and comprehensive health care will be more difficult than it ever was as the climate shifts out of favor of our rights. We need to get the truth out there and help our fellow women as much as we can. And also, do not forget about the trans community who is often overlooked by some of those advocating for health awareness. They matter too, and may even suffer in the same ways and because of pre-judgements and pre-dispositions of medical practitioners, end up having their symptoms overlooked and warning signs ignored all the same.
We have to look out for each other and we also have to look out for ourselves.
I hope to be healthier in 2017. I will be fighting for that.
I hope what I wrote helps someone out there. Please feel free to share this story with someone you may know who is suffering and also to all women so they are aware of what could happen. I never thought this would happen to me, no one does. When it happens, lets be prepared. My cure may not work for you, but perhaps it can lead you on the correct path. I know all the stories I read online that other women detailed on their struggles did lead me to uncover the truths I so actively sought. Without those women’s stories, I may still have been suffering today. Telling your story is important, however you can or feel comfortable with.
This stuff isn’t easy to talk about I know, it took all my strength to recount and share this, but I believe it’s worth it.
Thank you for reading. I wish you a safe and healthy New Year.