Tuesday, June 20, 2023

Fire Down Below - My 2ish Year Health Journey

Look, this topic is about lady parts of all kinds.  If stuff like that makes you run for cover, see ya tomorrow or Friday.  (Actually, if just mentioning that makes you run, see ya Friday.  Tomorrow ain't much better!)   I told you I was having a test done (which ended up not being done but I'll go into that) so I figured I'd follow up.  I was going to write about this forever ago but it's been ongoing so I just never did.

God, where to even start?  I had to open up journals to see when all of this madness started and we're actually going to the end of 2020 when I started having my first set of problems which was raw, sore nipples.  I was never a woman who had sore nips during that time of the month or anything like that so this was a new thing for me.  I did all of the research and ended up with things like lanolin for nursing mothers to bamboo boobie pads because my tata's rubbing against my bra HURT.  I was checked for lumps and weirdness and my then gyne had a compound pharmacy whip up a potion that could potentially help me.  It didn't and after like 4-5 months of dealing with that crap, it just seemed to clear up.  The only thing that seemed to work was this tea tree oil salve I use for just about everything.  If my boobs started feeling chafed, I'd put some on and it would feel better.   I was glad that was basically over with as our 25th wedding anniversary was coming up and I didn't want to be on boobie lockdown.  

We have always used a certain big box store whose main color is red's booty wipes.  Never had an issue or anything until I did.  I noticed a few times when I wiped, my area everywhere down there would burn with the fire of a thousand suns even if I ran it under water to get all of the stuff off of it.  I asked the Mr if he noticed a difference because I thought they changed the formula and he didn't at first.  I determined I couldn't use those anymore but the damage was done.  Whilst wiping, I felt a small lump down there on the inner labia majora.  I had the Mr look (you know, foreplay) and he said it looked like a zit.  I looked it up and talked to my bestie and we kind of deduced it was an inclusion cyst or acne.  Warm soaks did nothing for it but the bigger problem was the burning I got after using the last wipes was not going away.  Is this what a yeast infection feels like?  I never had one so I had nothing to compare it to.  I treated it starting a month before we were to leave for our anniversary trip.  No relief.  Checked with then gyne, 'treat it with a different active ingredient and just keep trying until something works.'  Needless to say, I spent our 25th anniversary with a smile on my face and vulva bright red and on fire in a bad way and on my 4th treatment for an infection I didn't even have.

When we got back, I gave the lady bits a rest since nothing was helping.  I called and made an appointment with my gyne who I didn't particularly have a lot of faith in.  She was available when my old one closed and honestly, I just never bothered to look for anyone closer.  I got in after 3 weeks and she took a look, literally recoiled in horror and scooted back like a ghoul was trying to attack her from my crotch and said "oh yeah, you have a yeast infection and BV.  Like I don't even really need to test for it but I will just to confirm."  How on Earth do I still have a yeast infection after using every active ingredient known to man!?  Then the internet horror stories came into play of women who get ZERO relief from them and this is just their life now.  What!?!?!  I got the results back.  "All is normal, give yourself 3 weeks of vaginal rest."  Pardon my French but are you fucking kidding me!?!?!  I'd already given myself 3 weeks of vaginal rest by then which I told them in response to that, the pain was as bad as ever, friggin' HELP. ME!  I got a copy and paste answer of the same thing noted in the results and that was it.  Eff this crap, so I looked at who was closest to me because I couldn't be driving back and forth across town now that I needed in depth help.  

I found someone literally 5 minutes from home who got excellent reviews on multiple platforms and more importantly from her former patients since she was newish in town.  I was waiting for her to come in when I hear her high heels clip clopping down the hall and she stopped to talk to her staff for what seemed like forever.  (It was 5 minutes.)  Then I heard it "I had to tell four women today they had cancer."  My heart dropped.  Cancer was not even on my radar.  Everyone told me these were classic symptoms of a yeast infection.  When she walked in, I was filled with dread and was now shaking.  She's about 15 years younger than I am and very personable...and sweary.  I gave her a detailed list with timeline for the file that I heard her reading out front but she wanted to hear some of it in my words as well.  When it was time to look down south, she did and said "wow lady, your vagina is PISSED. OFF!!  That is really red but we're going to fix it."  I took a deep breath as she seemed to feel like this was treatable.  She was completely reassuring and I felt I made the right choice with her.  She put me on Clobetasol ointment because she agreed this could easily be contact dermatitis and that should help calm everything down.  Thank God!  She did also do a more thorough panel of more obscure yeast and bugs that typical panels don't catch.  (That came back negative though.)  I thought I'd be good to go and when she had me come back for a follow up, she said it was slightly better but not as much as she hoped.  I asked about the inclusion cyst and she agreed that's what it was and said I could either have her remove it or leave it be.  Not wanting anything down there that shouldn't be, I opted to have her remove it.  Holy balls.  That wasn't comfy.  I basically got the equivalent of a biopsy wound and regretted that decision.

When I went back for the follow up, she was a little dismayed the redness wasn't gone so she started thinking of other possibilities.  I had a biopsy done for lichen planos which came back negative and who has even heard of such a thing?!   Not me or any of my girlfriends I talked to about this.  Did you know your labia can just like turn white and disappear!?!  Yep.  I learned all kinds of heinous things that I never knew existed and they were terrifying.   At this point she wanted to make sure I switched anything that touched my crotch to stuff without dyes, perfumes and chlorine bleaching from toilet paper to pads to soap so we switched.  (She recommended Dove unscented to wash down there.  Oh and did you know your super soft TP is literally the worst thing that could touch your skin down there?  Do some Googling.)   I had so many anxiety and horrible panic attacks during that time that it was almost every other day.  A vulvoscopy was scheduled to check for abnormal cells.  They take vinegar on a cotton ball
and swipe it on your poon-tosh and if anything glows then they're abnormal cells.  Well, apparently she saw the light.  Great.  She said this is like stage 0 cancer, not even on the cancer scale and I had something called VIN1.  Totally treatable but I would be on two pea sized swipes of estrogen cream on the opening to make the cells recede for the rest of my life.  As someone who does not like to be on meds of any kind, I asked if that was safe and she said yes.  (You mean like when I asked you if the antifungal powder you prescribed for me for my thigh cracks had talc in it because a family member got ovarian cancer from baby powder use down there her whole life and you said it didn't but it did so I had to research and buy the safe option myself?  FYI-  buy that stuff.  If you're even 30 lbs overweight you likely have skin yeast infections under the hang, thigh cracks and under the boobs.  That stuff only needs to be used 3x a week to keep things at bay and keep you comfy.)

I did research about the cream and was horrified to basically see cancer stamped all over it, it had parabens which can also cause cancer, now would I be rolling the dice being on the pill and putting MORE estrogen down there to up my blood clot risks, etc?  She assured me it was safe but after the powder thing, I didn't have the most confidence and definitely didn't like the idea of being on it for life.  VIN1 can clear up on its own half the time and I was kind of hoping to be one of those people.  She said she'd check me every 6 months so I scheduled the next visit just happy to not have to see her again for a while.  The next visit was a scary one because I'd be finding out if it was doing the trick or not.  I never missed a dose even though I hated the way it made my crotch feel when I applied it.  It burned a little bit and I just felt uncomfortable.  That eventually got better but I still didn't like it.  The vulvascopy (which is only inspection, no tissue samples) revealed to her eye that things had not gotten better and actually looked slightly worse...time to do a biopsy again!  Are you EFFING kidding me!?!?!  I had not mentally prepared for that for some reason and now that I knew what I was in for, my blood pressure shot through the roof and I had tears streaming down my cheeks as she did it.  I have what the Mr calls a pretty high tolerance for pain but the administration of the anesthetic is not fun and for me at least, it wears off fast.  I waited for 10 days for the results from that and I finally got them.  

No abnormalities detected.  See you in 6 months.

Okay, this is where a normal person would rejoice.  Not me.  Okay...so the original biopsy I had done was to test for lichen planos which came back negative.  When she diagnosed me with VIN1, I was diagnosed by sight but no biopsy for confirmation.  Yet when she thought visually I was staying the same or slightly worse, a biopsy said there was nothing there.  Is it because there never was anything there because a biopsy was not done to confirm it or because using the cream has worked?  When she did a follow up a few weeks ago, I actually requested a biopsy and had thoroughly prepared for it and she said never in her life has anyone asked for one.  I said the way my brain works, I would not be able to reconcile it because before when she visually thought I was worse, the biopsy said I had nothing.  She said she could do one but she was not going to let me get cancer and if she saw anything remotely suspect, she had the tools to do one right there and would take it.  She said everything looked good and there was no need for a biopsy which I was happy about but my brain wasn't happy about.  Obviously, I am happy there is a visual regression of those cells and a "thickening" she deems a good thing but I want answers to questions that cannot be answered because we can't go back in time.  She even grabbed my biopsies to compare when I asked her about it and she said "yeah the first biopsy showed abnormal cells and the second one doesn't."  

Well, the first one wasn't testing for cancer or if it was, I wasn't told that.  I suppose I will ask her when I go back (on the Mr's birthday in October- I still may change that.  If something is wrong, I don't want his birthday associated with that.)   If she can tell me if she tested for cancer on that first biopsy in addition to lichen planos because they just check for that anyway, that's one thing.  If she can't give me that answer, I need to let it go.  I'm not trying to Debbie Downer the results but I'm highly analytical and need to have those things straight in my head before I can relax about it.  The pain was gone within about two months of treatment in the beginning so the only thing that reminds me I have something wrong with me is twice a week when I have to apply that damn cream.

While this is typically caused by HPV, I do not have that and I'm too old for the vaccine now which sucks in case it could somehow help.  So I do urge all parents to consider getting their kids vaccinated so they don't have to go through a preventable cancer scare later in life.  (And don't let the BS politicization of vaccines of any kind stop you from saving your kid if they're in the age bracket to qualify.)  The big lesson in this is if your body is in pain and there is nothing obvious that basic tests are revealing, you switch doctors/get second opinions until someone friggin' listens to you.  If that first gyne had her way, I would've just sat there letting it fester untreated.  YOU MATTER and you deserve the healthcare you pay monthly for to work for you even if one or two particular doctors don't.

Swing back tomorrow for some tips should you find yourself needing a biopsy where the sun don't shine.

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  1. It was definitely the right call to switch doctors. We sometimes think that any doctor knows everything they need to know in order to figure things out but that is so not true in a lot of cases. Some doctors, the good ones in my opinion, are ones that are able to be more inquisitive and that allows some outside the box thinking that gives them an edge over others. If you find one like that, keep them! If you find one that at least tries everything they can think of and has a good bedside manner, they are keepers too. But if you find that you have one that kind of leaves you hanging on figuring something out... move on!

  2. Such a nightmare you went through. A long, arduous, and painful nightmare! It's so true about finding a doctor who will actually listen to you. And when it comes to something so personal and vulnerable like a gyne, it's vital to find someone you can trust. I'm on the search for one myself. I did just recently switch to a new primary, who literally spent over an hour with me just talking about my history and getting to know me, and he said for me to get to know him and what his philosophy is. I've never had a doctor do that before, and now I have three follow-up appointments booked for various things, and it feels like there is a real partnership. I've only had that twice with gyne doctors and don't hold out hopes for a great one this time, but I'll do what I can.


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