My Life With HPV

There is so much information and stories out there about “life with HPV,” but I decided to write my own. It is VERY common, but is something that can really affect the life of one diagnosed with this virus. I’ve had such an adventure with it already that, finally at the end of the summer of 2012, I decide to write about my story.

HPV

HPV is the most common STD, and possibly the most common virus on the planet, but how much are you really educated about it or do you go out and educate your mind about it until you are actually diagnosed with HPV yourself? Apparently 50%-80% of sexually active people will get it sometime in their life, some people can have it and not even know it. One doctor I talked to told me 100% of sexually active people will contract this sometime in their lifetime, whether they know it or not. It’s spread by skin to skin contact, but condoms don’t always protect you from it, it can be dormant for several years before appearing, and you can even get it in a closed monogamous relationship free of cheating. There are no tests for it in men if it never manifests physical symptoms, which is usually the case, and men can carry and pass it from woman to woman even after testing negative for STDS; they usually will never know they are carrying it unless a female partner turns up with an abnormal pap smear and positive for HPV. It can be caught in women through a pap smear and HPV test, and some strains can eventually cause cervical cancer if left unchecked and untreated. Despite what doctors will tell women, you can have an abnormal pap smear without having HPV. Because of the nature of the circumstances that surround the contraction of HPV, a woman is most likely not able to trace when/who it might have come from if she has had more than one sexual partner in her life. There is now a new vaccine for HPV (Gardasil released in 2009) but it only protects against the 4 most common strains, two high risk and two low risk, and is usually only administered to people ages 9-26 (there is also some controversy surrounding this vaccine).

My Life

Before moving to Dancing Rabbit Ecovillage, I had chosen a polyamorous life, as those were my natural values in romantic relationships. I never believed in cheating for my own relationships as long as my partner and I were open, honest, and responsible with each other but usually the boyfriends I had didn’t agree to such things. In the Concrete Jungle, in the average social circle, polyamory is not the norm (I’d never even heard the word until coming to Dancing Rabbit). Society teaches us that monogamy is the only way and we are usually never educated on the alternatives. I never had the opportunity to exercise these values until my previous long term relationship. The relationship had already been going for quite a long time before we opened it up or even had an opportunity to talk about doing such a thing. We rarely ever found anyone else to be with and both of us only ever had one or two sexual partners besides each other. Those people were “STD free,” according to tests. I put that in quotes because even though men can test negative for STDs, it doesn’t mean they don’t have HPV. In my own life I have had less than ten sexual partners and have tried to be responsible about my sexuality.

Upon moving to Dancing Rabbit Ecovillage I decided it would be a good idea to get a checkup to test for STDs. I was now single for the first time in a long time. I knew it would be important for the future of my new life at the ecovillage. Some other people were already going to a clinic so I decided to hop along. There are more people at the ecovillage who are experienced with polyamory, STD testing, and sexual safe groups so I had been more educated about such things upon visiting and moving to DR.

May 16, 2012

I went to the clinic in Kirksville. Originally we were told that STD testing could be done on a walk in bases. They didn’t even tell us that a pap smear was important for woman in the STD testing process, they didn’t tell us about them until we asked why we were not receiving pap smears for our STD test. “Oh that nurse only comes in on Monday and you’d have to make a special appointment for that.” I only received the urine test, as the nurse failed to draw blood from the small veins in both my arms. I had never had that issue before, but this was a nurse in Kirksville, MO not in Seattle, WA where the higher volume of blood draws might make a clinic naturally more experienced at doing such a thing. She said we could try again when I come back for the pap and that I should drink more water during the few days preceding the blood draw.

June 4th, 2012

We all go back to the clinic in Kirksville for paps. I was concerned about the possibility that I might have HPV, given my ignorance and sexual lifestyle before moving to DR and a recent conversation I had with another Rabbit about safe sex practices and STDs, needless to say I was still pretty ignorant. The pap smear was done and the nurse said my cervix looked normal so she was not going to do the vinegar test (she wouldn’t have found anything even if she had), she also said that because my cervix looked normal, I could get the HPV test if I wanted to but she didn’t recommend it as very necessary, and it would be an extra $100, so I decided not to do it. My cervix looked normal and I trusted the pap smear nurse to know what she was talking about.

The blood drawing nurse again failed to get blood out of both my arms after sticking them each a couple times. She said she was using the smallest needle she had. I felt so awful and emotional that she couldn’t get any blood out and I wouldn’t be able to have the test done, that I started to feel nauseous. I never get nauseous when having my blood drawn so I’m pretty sure the nausea was due to my emotions I had in that moment. Since I was feeling queasy, the nurse put me on the floor with my feet up and dabbed my face with wet towels as I cried. I went back to the waiting room where my friends suggested that I take the nurse up on the option to draw blood from my hand. I went back to the nurse but she wouldn’t do it because I “almost fainted” trying to get it out of my arm. She wouldn’t do it and I tried to explained to her why she had to put me on the floor, but she wouldn’t even try. I went home angry, upset, and frustrated, and practically cried the whole way home along the 1 hr drive back to DR. It was the first time in a very long time that I had genuinely been angry at something or someone.

June 11, 2012

My mom is visiting DR and has a rental car. She drove me to the medical clinic in Memphis to have my blood drawn. With luck I get there on the day the currier is supposed to pick up the samples. The nurse in Memphis has a small needle used on children and successfully draws blood from my hand after I told her about the nightmare in Kirksville. She says the reason it was so difficult for the Kirksville nurse to draw the blood is because my veins roll away when poked. She says she will send me the results as a hard copy in the mail. It turned out my test was negative, but she didn’t remember to have me sign a release form to send me a hard copy of my results so I had to go back into the clinic to get the hard copy and sign the form.

By this time the nurse from Kirksville had already called me about my abnormal pap smear and recommended I get a colposcopy and biopsy. Memphis is closer than Kirksville so I decided to do it there. After receiving the first abnormal pap smear in my life, I feverishly went searching the internet for any information I could find on such things, HPV and abnormal pap smears.

June 29, 2012

I went to Memphis for a colposcopy and biopsy. It was not very easy for the doctor to find the abnormalities as my cervix looked normal to the naked eye and still normal after testing with vinegar. He had to move to using the dye. They took two samples from different places on and in my cervix. Because the abnormalities were difficult to find, the doctor was concerned that the abnormal cells were inside the cervix, which would be more concerning and more of a possibility to lead to cervical cancer. He said these abnormalities are always caused by HPV and “corrected” me when I had told him I had read on the internet that it wasn’t true. He asks me if I am in a monogamous relationship and I say “no,” telling the truth, but he asks me no further questions about that and just tells me not to have intercourse for at least three days. I thought it was weird why he didn’t ask further questions, like “are you in an open/polyamorous relationship,” but I didn’t speak up about being in a polyamorous one instead.

By now I was in a polyamorous relationship with a partner that I had lots of conversations about what I was going through. He was new to polyamory and we were both new to polyamory in community, as such a lifestyle can be very different in community than it is in Concrete Land. I was reading a lot about HPV and sharing it with him. He didn’t seem to think that it was a very big deal considering it probably wasn’t going to do anything to him, he’d just have to warn any sexual partners for the next couple years, he felt that the relationship with me was more important, and figured he would already put himself at risk anyway, so we decided to be dedicated to each other and safe outside our relationship. He also had lots of very good advise about how I might try to get rid of it naturally, what I could do or eat, instead of the invasive procedures the doctor was telling me to do. I also, again, feverishly went onto the interwebs to read about natural and naturopathic ways out of cervical dysplasia. After a few months, as the natural path of relationships might go, he decided he wanted a little more space from intimacy in his life in general and decided not to be intimate with me or anyone else for the time being. It was just how he was feeling at the time and didn’t have to do with HPV.

July 2012

The nurse and the doctor from Memphis call me to tell me that my biopsy results are concerning enough, cin1 and cin2, to warrant a Leep procedure. They explain the procedure to me and the doctor explained why he was concerned that these abnormalities could cause cancer some day, the abnormal cells were also on the inside of the cervix. He says he wants me to get the Leep within the next 6 months, but as I am leaving in the winter, he said no later than early September, as I would need about 6 weeks to heal from it. He notes that we talked and gives me a separate phone number to call so I can find out how much the procedure is going to be. I don’t have insurance and the cost lady said it could be between $3,500 and $5,000, depending on a few factors- income and how the procedure was done, if they have to do it in the hospital or not. If they have to put you under during the surgery, it costs more, so I chose to be awake for the surgery. By now I had already spent about $700-$800 on medical bills with the tests and procedures so far, and I still didn’t know for sure if I actually had HPV or not, even though the doctor says this is caused by it (I read plenty of cases on the internet about people who had the same results as me but tested negative for HPV, and about why birth control could also be the cause of the readings. I have been on birth control for about 8 years already).

I decide to go with trying the natural approach for now, at least until I find out what kind of HPV I have, if any. I talk to lots of people, and most of the women I talk to have already had to go through cervical biopsies or Leeps. One woman even had a really good book to recommend called “Women’s Encyclopedia of Natural Medicine.” I bought some supplements from Zimms General Store that women with cervical dysplasia are usually put on, and I dedicate myself to remembering to take them regularly.

August 9, 2012

The midwives of the village will do another pap smear for me, this time with the HPV test. The test will not tell me exactly which strain of HPV I might have, only if it is high risk (more likely to cause cancer) or low risk or none at all. I decide that is the information I need because it would determine if I should do the Leep procedure (the next step in treatment) before I leave for the winter or if I might be able to wait until I return home next spring. I go over to the midwife’s house and the pap smear is done right there in her house. We even take a picture of my cervix. Everyone has fun talking to me, filling out the forms, and taking the picture. The picture thing started out as a joke but I always carry my iPod around anyway so we took one. It was the funnest pap smear I’ve ever had.

August 22, 2012

My pap results come back, again, as abnormal and this time positive for High Risk HPV. It was a very emotional day for me and I went to my tent alone and cried for about an hour until I decided the initial shock was over, and I had better go eat dinner soon. Between crying and dinner I went to have a conversation with my former lover and I went to borrow some books from an office in Skyhouse. As we were perusing the books she showed me a little hand book on open relationships made by an experienced polyamorous guy who lives at Twin Oaks. I had already heard about Paxus from some other Rabbits and his handbook made me feel a lot better about my life, saying that a lover is someone who is “in love with someone else, who has a deep feeling of caring for their partner.” And that a lover doesn’t necessarily mean someone you are having intercourse with, that you can have lovers without intercourse, and that it was too bad that most peoples’ definition of lover = sexual partner. If I looked at my life that way I already currently have a few “lovers.”

The Browns noticed that I wasn’t quite myself at dinner and offered to be there for me and provide emotional support if I wanted it. I wasn’t quite ready to say what was going on even though I figured they’d already guessed it. I wanted to stay stable for the upcoming song circle which I knew would help bring more joy into my heart after an afternoon of crying. After song circle I cuddled up with a couple of them and talked about my day. They’d been hearing about my adventures all along, but this was the day I had gotten the result. One rabbit went onto the internet, doing research, and said I should get another test that would be strain specific so I could know whether or not the HPV vaccine could protect my future sexual partners, or myself, from the type of HPV in the future. He also found something that said that the HPV test I did has a large chance of false positives. I didn’t want to do anymore testing, but he said he’d pay for it so I scheduled another pap smear with the village midwife.

I decide for myself that I won’t be having intercourse with anyone until I start having normal pap smears again, but this could be as long as a year or two. I think I am starting to see sex differently in my life. It feels sad that I live in a world where sex is more about what kind of STDs I can pass to someone or they can pass to me and less about having sex with someone because I love and care about them or even just for fun. It also feels sad that I’ve put others at risk or that someone put me at risk or that I put myself at risk, even unknowingly. It also feels sad that I didn’t know as much about HPV as I do now, I think I might have made different choices in my life if I had. I decide that in the future I don’t want to be having sex with people, even protected sex, just for the fun of it or because someone likes me and cares about me but maybe I’m not totally sexually into them, although if I had made that decision before in my life I might have only had sexual experiences with a couple people, and still be at risk for this crazy virus. I’ve told part of my family that I wanted to come visit them this year, but now I don’t think I should do it anymore because of this surgery. That half of my family is Mormon and I try not to explain too much about the surgery because I’m afraid they’ll just think I’m going to hell anyway. A lot of mixed emotions stew within me today.

August 26, 2012

I go to get yet another pap smear. The midwife says there was a tiny bit of blood this time, but she says that happens sometimes and it might be due to the fact that I’ve had so many pap smears in such a short time. She says she bleeds a bit whenever she gets a pap smear now and she thinks it is because she has been pap smear guinea pig so many times through the learning process to become certified to administer them. After a while the cervical cells get a bit irritated if not given the proper time to recover. This test is going to be much more expensive than the previous test, but I won’t be paying for it. I try not to think about how crazy this whole process is that I’m going through.

By now I have made an appointment for September 5 to do a Leep procedure with the medical clinic in Memphis. Everyone has been so supportive and wants to come with me to the surgery.

September 5, 2012

I go to get the Leep procedure done. A couple of the Browns accompany me to the medical center in Memphis, my friends Kassandra and Nathan.  I’ve lost 10 lbs since I was here last in June, but Nathan thinks it is because I’ve stopped eating any sweeteners or junk food. I think it is because I’ve been so stressed out about HPV, why else would a 100 lb petite lady shed 10 lbs down to 90 lbs, at least I am still considered healthy for my body size, weight, and age of 28. There was a new nurse there, the usual nurse, and the doctor. They were all very nice and good at answering all our questions. I squeezed Nathan’s hands so tight for so long during the procedure that it hurt my hands after a while. I just kept trying to breathe and relax, but it wasn’t easy with all the activity going on inside my vagina. There was a light panel above the chair that looked like a palm frond and the blue sky with a few clouds, I just tried to imagine I was back on a tropical beach like I often am for work on the cruise ships. There was one point after they gave the anesthesia shot into my cervix that it seemed as though everyone sounded really far away and muffled even though they were standing right next to me, “I can’t…I can’t hear you,” I told Nathan. Luckily I didn’t pass out because the nurse put a cold wet towel on my forehead. The doctor said there are a lot of nerves to the brain from the cervix so fainting or feelings of almost fainting are not unusual. When they actually cut my cervix it felt a little hot, but it went quick and I didn’t feel faint while it happened. The doctor offered if anyone wanted a look and I asked Kassandra to take a picture. The doctor wants to see me again in a month to make sure I’m healing properly. The lab results from my previous HPV test still aren’t available.

It was hard for me to look at the picture later though and see the huge hole and blood the procedure had made in my cervix after seeing the nice looking one from my pap smear a month ago. It was kind of stressful for me to get the Leep, and I hope I never have to do it again in my life. Even though I know I can’t go around living my life being paranoid about getting this virus again, it’s hard for me to watch the changes inside myself around my own thoughts and feelings about my sexuality. I never had opportunities to be sexual with very many people in my life, but I remember I used to have feelings of being so open, responsible, adventurous, and free surrounding my sexuality, but now I just feel shut down and closed off and very restrictive. It makes me feel very sad and cry when I think about these changing feelings and I’m not sure how I’m going to feel about these things in the future in a year or two from now.

September 6, 2012

I don’t think I feel tired today, but I didn’t sleep very much last night. My abdomen aches more today than it did yesterday, but walking feels fine for me and there isn’t much discharge at all. Everyone is so supportive and I’m really grateful I live in this community with so many nice, caring people in my life. They let me rest at their house and give me hugs and cuddles and offer to get me things like a drink of water, and they ask me if there is anything they can do for me. I feel very capable but I do appreciate their sentiments.

September 2012

I went to the doctor to see if the Leep was healing all right. The doctor says everything looks good, and if I have two to three normal pap smears after this then I’m in the clear. He says all the margins from the tissue they took out of my cervix were clear so supposedly they got it all. He also says my body may recognize other strains of HPV and fend them off as if I am immune to them since I’ve already had HPV 18, but I decide to get the vaccine anyway, just to be safe.

November 2012

I go to Planned Parenthood in Seattle while visiting my family for the winter holiday season to get the fist shot of three for the Gardasil vaccine. Since I am over the age of 26, I will be paying for this vaccine out of my own pocket for a total of about $750! The lady made me stay for ten minutes afterward to make sure I wouldn’t pass out, she says sometimes people do after getting this shot. I didn’t, I was fine afterward. For some reason, to me, the cost is worth the peace of mind this vaccine may provide me, in my present life, and for my present and future romantic relationships.

March 2013

I go back to Planned Parenthood after returning to Seattle from a cruise ship contract to get the second shot of Gardasil. It was weird, like I could feel it shooting into my arm. This time I felt like I was going to pass out afterward, but I didn’t, and the lady never said anything about staying afterward this time, different lady than last time.

April 2013

I got my 6 month pap smear from the village midwife and my pap smear comes back normal. Yipee!

July 2013

I complete the HPV vaccine at the Seattle Planned Parenthood while visiting my family after a cruise ship contract. This time there were no feelings of fainting.

December 2013

HPV is back! I need another colposcopy. I haven’t really seen action for about a year and a half. The doctor says you can have normal pap smears and still test positive for HPV. I’m not sure whether to be upset about it or succumb to the fact that I’ll just have STDs. I’ll probably have herpes by the time I’m 50 anyhow. As long as I don’t get AIDS, I’ll be happy.

This time it’s only cin 1, and the doctor said to “watch and wait.” This means come back in a year for another pap smear. This is a Seattle nurse at a Planned Parenthood I saw while visiting my family in Washington for the holiday season this year, so she has different advice about surgery, HPV, or a watch and wait method than a nurse might in Missouri.

December 2014

Still testing as an abnormal pap smear and positive for HPV. I went to the same Planned Parenthood clinic in Seattle as I had one year ago. I need another colposcopy and possibly biopsy. The nurse recommends I do this within the next couple months, but I got a new job here in Seattle and want to wait a bit longer than two months so I have my new insurance to cover it.

OK, time to do something drastic and amazing! I am changing my diet! It’s my new year’s resolution~ A diet with lots of veggies, some fruits, some nuts, minimally processed grains, rarely meat and only if it is a small animal- no pigs and no cows, no or very low gluten, No processed sugar, no processed food or junk food at all.

I figure if this works, at least I know what to do when/if I get it again, instead of trying to ward it off like the plague. It’s good to be educated, but not good to be paranoid. The best system is to figure out how to zap it if it shows up, not to avoid my awesome sexuality.

February 2014

I’m doing all right with my new healthy diet. I slip up sometimes, but it’s rare and I allow it for special occasions. I’m also eating a clove of garlic every day along with a few pearls of green tea. I often spice my food with turmeric because I hear it has good cell regeneration properties. I also make and drink Kombucha every day. I am taking one supplement of folic acid per day and one herbal suppository every week for a maximum of 6 weeks.

My skin is very smooth, and I feel great which are nice benefits also.

At first it was challenging to adopt a completely new diet even if it was for health reasons, but once you get over the hump of challenge, it is pretty easy. On top of this healthy diet, I’ve made a huge transition in my life to go from my home of Dancing Rabbit Ecovillage back to my hometown of Seattle. I know my body doesn’t like it very much when I do things like that. I lost 15 lbs, and that was before the pap smear in December. Right now I am hovering around 95lbs which is healthy for me, being only 4’10,” but I also think my healthy diet is helping me stay there. I’m usually between 100-110 lbs so 95 seems a bit low to me, but I trust it is what is healthy for my body on a healthy diet.

April 16, 2015

I finally went for my colposcopy today, and the nurse couldn’t see any abnormal cells on my cervix!!! I did not need a biopsy as well as the colposcopy for the first time in years, literally. They took a scrape of cervical cells like a pap smear. I’ll get the results in two weeks. I didn’t tell her all about my new diet, even after she seemed confused as to why I was diagnosed with High Risk HPV just three months ago and now have no evidence of this diagnosis. I mentioned I’d heard people could change the cells through what they ate and I had been eating a different diet in Seattle than in the ecovillage I used to live at in Missouri, but she totally brushed it off that food would have anything to do with HEALING A VIRUS!

April 28, 2015

Woo Hoo! The doctor called and said my colposcopy was negative, meaning there were no abnormal cells on my cervix. Yipeeee!!!

This healing inspired me to write a book called Compassionate Kombucha: How to Brew Your Own for Healing and Manifestation. You can purchase the book and download a detailed free PDF of the healing diet I used to help my body heal from HPV. Despite what any modern medical doctor will tell you, you CAN heal your body with food. What a successful triumph!!! I hope my healing success helps others on their own journey for healing abnormal cells or cervical dysplasia. This is why I have made the healing diet into a PDF available for FREE at this link:

www.goddessallison.com/kombucha

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