Pelvic Pain Part 2.......cuz SO MUCH.

I got my IUD out in August of 2012.  All excited--we were going to start trying to make a baby!  Weaned off my antidepressants.  Then, in October I had a flareup on Columus Day weekend.  I didn't think much of it at first........until it lasted......and lasted.......and lasted.......and never went away.  I kicked myself for not taking probiotics every day for the past four years.  Obviously my body needed them.  I began to panic.  Like, really freak out.  Being newly unmedicated for my depression made it even worse.  I would stand in front of all the yeast/other infection stuff in the pharmacy and feel like I had been catapulted back to that nightmare from four years ago where I would stand in the same place wondering the same thing--what's wrong with me?  I took probiotics.  No help.  It seemed to get worse and worse.  And then I got my period.  Holy shit, the pain.

Let's talk about that pain for a second.  First of all let me say that I am not a baby when it comes to pain.  I am one of those people who can breathe my way through things, walk things off etc.  This pain condition was more painful than anything I've ever experienced in my entire life.  Getting my period was like having a knife in my cervix.  Other times it felt like the world's biggest speculum was shoved up inside of me as far as it would go and opened as wide as possible up at the top.  The top was the worst part.  Sometimes I had pin and needles on various parts of my vulva.  Sometimes it would feel like my whole vulva was burning.  I would be convinced that this time I would go to the bathroom and be able to seem something--inflamation, redness, anything.  But no, everything always looked normal.  Then I would touch it.  And it didn't hurt.  Touching and poking didn't hurt.  It hurt just........being.  Existing.  (That's when I got the inkling it was nerve pain.)  And sex--out of the question.  Sex itself didn't hurt too much, but afterwards it was like someone had taken knives and sliced me up inside.  But I digress......

I went back to Dr. K's office.  Why did I do this you might ask?  I don't know.  I guess because I felt like he had figured it out the first time and they were supposedly so good.  Well I couldn't see him but I saw on if his associates.  And she--you guessed it--found nothing.  I ugly cried for a long time before realizing that I could not go back there.  He had told me I was crazy.  Everyone in that office thought I was crazy because I was there so much four years ago.  I couldn't--wouldn't--put myself through that again when I was in this much pain and KNEW something was wrong.

I decided to look up a new doctor.  I found someone close by in my town and went to see her so hopefully.  She was "really understanding" and seemed to have a great bedside manner (I say "seemed" and use quotes because when I thought about it, she would say about ten thousand different things and then ask me what I thought.  I needed her to think, not me.  She also said, "well, it could be thisthisthisthisthisthisthisthisthisthis or this" to the point where it was not helpful, just scary.)  She did cycle day 3 bloodwork on me and then guess what?  We got hit by a SuperStorm called Sandy.  The whole state just SuperStopped.  It was horrible.  I was lucky enough to live far enough north that we got the least of it--people down the shore lost everything.  We lost power for eight days.  After three days cooking noodles on the gas grill outside my in-laws in a neighboring town got their power back, so we packed up the cats and went to stay with them.  Naturally I could not get ahold of my doctor's office to get the information I needed about my bloodwork.

After about a week and half, when the state had started to come back to life I received word from her that the bloodwork was all fine.  She didn't know what was wrong but she was going to think it over.  She didn't get back to me for a while and whenever I called they would tell me she was still thinking it over.  I got my period and felt that stabbing pain in my cervix again.  I went to see her after I was done bleeding, it so much pain I was sick to my stomach.  She called me back a few days later and told me I had bacterial vaginosis, but that she didn't feel that was the whole story.  She wanted to think it over and ask a colleague what he thought.  Frustrated, I enlisted the help of my chiropractor.  I went into his office and burst into tears.  He gave me some supplements, an adjustment, told me to cut out dairy, grains and sugar and told me he knew he could help me.  I hoped he was right, and over the course of the next few months I would find myself feeling hopeful and refreshed every time I left his office, yet by the time I reached my door I would be depressed again.  I knew deep down that there was something really wrong that all the alternative therapies in the world wouldn't be able to touch.  I felt like I was getting an infection every time I would get my period.  It was starting to become painful to stand for too long (bad news for a music teacher on a cart who worked at 2-3 three schools every single day).  And my doctor, after two and a half weeks, was still "waiting to hear back from her colleague".

It was my mom who finally took matters into her own hands.  She lives in California but we are very close.  I was calling her in tears all the time and had gotten to the point where I was starting to literally contemplate whether or not I could live like this for the rest of my life.  Every Google search produced women talking about "vulvodynia" that they had lived with for 30 years.  She found a new doctor at Weill-Cornell.  This doctor specialized in "vaginitis" and seemed like a good fit for me.  It was early December at this point, and it had been about two months.  (That seems like a short time now in retrospect, but when you're in that much constant pain, unable to have sex with your husband, wanting to get pregnant--it was like eternity.)  I went to see Dr. P with so much hope in my heart.  But I'm not even going to bore you with the details.  It went like this:

Me: I am in pain in my vagina.  I think I am getting infections with my period but I can't confirm that because I haven't been tested every month.  I don't know what's wrong.  My first doctor told me I was crazy.

Dr. P: okay.  Well from what I see here everything looks good.

Me: HOLY SHIT WHAT ARE YOU DOING THAT FUCKING HURTS PLEASE STOP DOING THAT!!!!

Dr. P: I'm twisting your uterus in my fingers.

Me: WELL CAN YOU PLEASE STOP???

Dr. P (after examination is said and done): Well, I can't see anything wrong.  We'll see what the labs say (I could tell her what the labs would say--normal everything just like always).  You know, these things, they're annoying but there's nothing really wrong.  Why don't you just go ahead and get pregnant and we'll take it from there.

Me: ::blink blink::  JFC.

I'm telling her that I can't have sex because it hurts so much and she's telling me to go ahead and "get pregnant".  I was deflated.  The holidays came and went.  My mom came to visit and I actually started to feel better.  I thought for a minute that everything would be okay.  But as soon as school started again it started right back up (which of course led to everyone saying to me, "oh it's stress!").  My mom told me about this place in the City she had found out about called SoHo OBGYN that specialized in this type of thing.  She ordered me a book written by one of the doctors called Healing Sexual Pain.  I became hysterical at the idea of going there because this doctor was big time--if I had to see her it meant that something was really wrong........I was scared.  I suddenly had the idea to post about my situation on The Bump, the online pregnancy forum I had been a part of since I got my IUD out.  And this one thing changed the course of my whole situation.

continued in Part 3

Pelvic pain you say? What is this pelvic pain you speak of? Part 1

So many people have no idea about pelvic pain.   So many DOCTORS have no idea about pelvic pain.  I had no idea about pelvic pain.  There are many different ways it can manifest, many different types of pelvic pain and many different things that can cause it.  All I can tell you about is my own personal experience.

I would like to start out by saying that I wouldn't wish it on my worst enemy.  No one--fucking no one--wants to go and tell the doctor their vagina hurts.

So in 2007 I started having this odd sensation in my vag.  I thought I had an infection so I used OTC yeast stuff.  I kept feeling like it was gone, then not gone.  It was weird.  Finally I gave in and went to a clinic (I had moved to a new area about a year beforehand and didn't have a new gyno yet).  The doctor didn't find anything but said I should go to a specialist if I still didn't feel good.  So I did.  Mind you at this point it's been about five months or so (and now 2008) since the symptoms first started.  The specialist told me it was likely psychological because she found nothing.  Obviously I was furious.  I was trying to decided what my next step should be when the specialist called me a couple of days later and told me the lab came back positive for gardnerella.  That's right bitch, I thought.  I KNOW my own body; I knew something was wrong.  She gave me antibiotics.  They didn't work.  So she gave me somthing stronger.  Well, the stronger antibiotics she gave me?  They gave me a massive yeast infection.  So I was back to OTC yeast stuff.  Not working.  I was so frustrated at this point.  I had just gotten together with my boyfriend (now my husband) and wanted to jump his bones so bad!!!  I decided to step it up and made an appointment at the OBGYN office of a nearby reknown hospital.  They gave me boric acid (horrible, evil stuff; stay AWAY!!!!)  It felt like it might have worked, but I finally had sex with my boyfriend and it came back immediately and with a vengeance (even though we used protection).  They gave me another round of boric acid which left me--dry.  Dry and in so much pain.  But I mean dry as in no cervical fluid no nothing.  I went back to the doctor and they told me they couldn't find anything; said everything looked good and they didn't see why I should have pain.  They tried to refer me to a doctor in the city.  I called and they didn't take my insurance.  So I called back, hysterical at this point.  I told them they needed to give me another referral.  They put me on hold and came back saying the head doctor wanted to see me and could I come in right away.  YES OF COURSE.

Enter Dr. K.  He swabbed me, looked at the slides and told me I had absolutely no lactobacillus at all in my vagina--"atrophic vagnitis"-- because of the boric acid and gave me estrogen suppositories.  Atrophic vaginitis is when the walls of the vagina thin out and get dry from lack of estrogen, usually after menopause.  Anyway, I took the suppositories and it didn't help.  I went back to him.  He said I still had a little bit of yeast and gave me Diflucan.  I took that.  Cleared up the yeast, but I was still all dry and in pain.  I kept going back thinking it was still yeast.  He kept sending me away saying there was nothing wrong.  I was taking probiotics like crazy and had this long line of supplements that I was taking--anything to feel better.  But nothing was helping.

This went on all summer long, until finally I went to see him and he took me into his office.  He told me I had to convince myself psychologically that there was nothing wrong with me.  Basically, he told me I was crazy.  And the worst part was, I believed him.  I left and threw my hands up, deciding it would somehow take care of itself.  It had been 9 months.  I was done.

Anyway, eventually it did resolve about three months later, after one year.  Sort of.  See, I would have these flareups, like maybe three or four times a year.  They would last for about 3-5 days where I would start with feeling itchy and then feel dry and then get pain.  I would take a bunch of probiotics and it would resolve.  I had no idea at the time, but that was likely just coincidental.  This continued for four years.

continued on in Part 2

New Year's Day

Well.  If it isn't New Year's Day 2014.  I started this blog almost two years ago when I decided I was going to try and go off my medication for my clinical depression to prepare for pregnancy.  Holy shit.  I had no idea what I had coming to me.  It became so much that I couldn't even be bothered to blog about it because it just became ridiculous.  Here is what happened in nice neat bullet points:

• Feb. 2012: started medication withdrawal, started blog.  (This was a failure.  Not ready to go off meds.)
• July 2012: moved to a new house, started med withdrawal for real.  Sought help from a chiropractor.
• August 2012: completed withdrawal.  Bumpy ride, but worth the trip.  Feeling physically better being unmedicated for the first time in twelve years. (see old post about side effects)  Got my IUD removed.  Successfully audition for a local semi-pro a cappella group.
• September 2012: diagnosed with nodules on my vocal cords.  I am a singer and a music teacher.  Not good.  My voice feels like hot lava.  Have to quit a cappella group after two rehearsals.
• October 2012: came down with pelvic pain condition.  Whoa.  Had doctors tell me I was crazy, that it was all in my head.  No one is crazy enough to tell the doctor that their vagina hurts.  Fuck that. 
• February 2013: Everything was awful.  Pain so bad I can hardly stand for one hour.  My depression/anxiety was crazy because of all this crap going on.  Vocal cords were in shreds.  I decided to take time off of work to figure out what was going on because doctor's appointments are taking up too much work time.
• March 2013: Came down with Stevens-Johnson Syndrome, a potentially deadly allergic reaction to a supplement (Sees 2000 lomatium dissectum/desert parsley).  Had to be hospitalized on IV meds for four days.  Finally had an appointment with a specialist in NYC who found something with my hip.  Refered me to hip specialist.
• April 2013: DX (finally!!!!) with bone impingement and a labral tear in my left hip.  The doctor told me that the head of the femur was too big for the hip socket, therefore tearing the labrum and sliding out of the socket against the ilio psoas tendon which was inflamed.  The ilio psoas is connected to all the nerves in the pelvic floor.  What?!  Unbelieveable.  But at least it got figured out.  Got told I should not go back to work as I will be anticipating surgery.  Got a phone call from my job saying they have decided not to renew my contract because of some lame reason they came up with to cover up the fact that they are afraid if they renew my contract I will still be sick.  Illegal.
• May 2013: My ENT told me my nodules were responsive to the speech therapy I had been doing and were 99% gone.  Got surgery to repair my hip.  
• June 2013: Started physical therapy.  
• July 2013: rejoined a cappella group.  Best thing to happen to me in 2013!  Feeling optimistic.  Had HUGE pain flare; worst since before I stopped working.
• August 2013: Got an injection into my pudendal nerve to calm the pain.  Came down with stomach condition.  Right when things were starting to get better with my pelvic pain.
• September 2013: Got offered a long term sub position in a nearby school district.  Hooray!
• December 2013: Finally saw a doctor that might have a clue what is happening with my stomach.  Implemented new diet starting today.  So we'll see.  Job ended.

Sound like fun?  Cuz it wasn't.  Now I am going to start thinking about infertility testing this month too.  You know, since there's no baby yet either.  And I'm 34 1/2.  Ugh.  Anyway, my hope is that this year will be a lot better and that I will be able to put all this shit behind me.  I will try and get this blog going because I'm tired of feeling like I have nowhere to vent my frustrations.

>^^<