Pelvic Pain Part 3.........the conclusion

Enter GhostMonkey.  Yes, the famed GM.  Of all people, she was the one to point me in the right direction.  I posted about my pain on The Bump, trying to see if anyone else had experienced anything similar.  It turned out that two of the most active, well-loved, snarky and long-standing members of the forum had suffered from her own pelvic pain.  I had never even heard the phrase "pelvic pain" before and was kind of happy to find out that what was happening to me was actually a thing.  GM gave me a link to the Pelvic Pain Society, which provided information on how to find providers in your area.  This is where I finally found the people who would put me on the right path.  (HERE is the link in case you want to check it out for yourself or someone you love.)

I went to see a pelvic floor physical therapist first.  She was amazing.  I loved her website because there was all sorts of information on what to do if your doctor wasn't listening to you or if you couldn't find anyone who would take you seriously or who understood your condition.  She was heaven sent.  She gave me a very thorough examination and was very kind and listened to everything I said.  She said it was not pelvic floor dyfunction, which of course as a physical therapist was mostly what she dealt with.    And then she told me that the best place I could go for this kind of thing was SoHo OBGYN in the City.  I kicked myself for not making the appointment with them when my mom first told me about it.  Since their office was booking three months out, she told me in the meantime to go and see another OB that she worked with who would be sympathetic and might be able to help at least a until then.  I was so happy to finally have someone who got it!!!!

I made my appointment at SoHo OBGYN for March and went to see Dr. A, the one recommended by the PT.  Dr. A was wonderful.  She had a holistic approach to her practice and was very understanding.  She recommended an acupuncturist to me (who was ironically the same guy a friend of mine had been hounding me to go see because he had helped her so much) and told me I should go and see him for my pain.  I knew it was a sign that I was meant to go and see him.  (He ended up becoming a staple in my life.  But we'll hear more about him.)  She told me she would not give up on me and drew my blood to test me for a myriad of things.  In the meantime I made the appointment with the acupuncturist and waited to hear back from her.................except I didn't hear back.  Day after day went by and I heard nothing. I kept calling the office and they kept telling me she would call me and she didn't.  And during that time was when everything came falling down.

I got my period the last week of January.  I was pushing through my days at this point, after four months of debilitating pain and the mindfuck of having no idea what was wrong.  I knew my work was suffering, but I was honestly doing the best I could.  This month though, the shit hit the fan.  During my last period of the day, I was standing in front of a second grade class with my pudendal nerve screaming at me and my whole pelvic floor feeling like it was going to fall out.  I had to pull up a chair and sit down and at that moment I realized I couldn't do it anymore.  I had to take time off.  My principal, although informed about what was happening, was starting to give me shit about missing choir rehearsals for doctor's appointments.  I couldn't continue to try and schedule around work all the time.  I knew I had to take some time off.

I took another sick day the next day and started to put a plan in place.  Dr. A finally called me back and aplogized for not getting back to me sooner and told me all my tests came back normal (big fucking surprise).  I burst into tears and asked her if she would write me medical documentation to get the time off of work.  Thankfully she agreed.  I decided to take off two months and planned to return to work after spring break.

The second day of my medical leave I woke up with the flu and I was in bed for seven days.  Thank goodness I had taken leave.  Things progressed extremely quickly after that  because I had so much time to see the doctors I needed to see.  On recommendation of Dr. A and also the PT made an appointment with a urogynocologist who specialized in pelvic pain and who worked with both of them.  He was actually extremely helpful if for nothing else because while he had a wonderful bedside manner he was not very gentle during the examination.  It was because of this that we were able to find that the pain was mostly radiating from the left side.  He told me that he was going to discuss his findings with the PT.  The PT asked me to come back in to see her again for another more thorough reevaluation.  That was when she discovered that I had pain in my left hip joint.  Did I know I had that?  Yes I did.  But I never, ever thought anything of it.  I always figured I needed to get more exercise or something.  But she told the urogynecologist and they agreed that I should get MRIs done of my left hip, pelvis and lumbar spine.

BOOM.

FINALLY, something came back with "something".  The urogynecologist called me and told me that my hip had a labral tear and that I should consider seeing a hip specialist.  I had no idea why, but I didn't care--they had at least found SOMETHING.  Well wouldn't you know it, by then my appointment at SoHo OBGYN was coming right up.  Enter Dr. Harris.  When I got to my appointment she had all the information there at her fingertips and immediately said she thought it was my hip.  She explained that she had had ballerinas with this injury (everyone I tell that to has a laugh considering I am clumsy as hell and a bull in a china shop--anything but graceful or athletic) whose complaints were similar to mine.  She and her partner in practice had even done a study with a hip specialist at the Hospital for Special Surgery regarding pelvic pain and the hip.  Unbelievable.  I was getting somewhere!

Obviously I made an appointment with the hip doctor as soon as I could.  The day I saw him was like a beautiful dream.  He was so kind and soft spoken.  He told me all about how he had come to do the study with Dr. Harris and that he had helped about 100 people through it.  He looked at my MRI and proceeded to explain to me what was happening.  He said I had bone impingement--the head of my femur was too big for the socket, causing it to slip out and tear the labrum (tissue that holds the femur to the hip).  The head of the femur, hanging out of the socket, was pushing forward and rubbing up against the ilio psoas tendon causing inflammation to the tendon.  This tendon is connected to all the nerves in the pelvic floor, which are now also inflamed and sending pain signals up and down my vaginal canal.

FUCKING BOOM.  AGAIN.

I literally almost hugged him.  I had to force myself not to cry.  It was amazing.  He told me that protocol was that I would have to get a cortizone shot in the tendon first before surgery, the idea being that if I felt better then we would know that was the problem then.  After discussion we agreed that I should not return to work.  I was terrified that if I went back to work (on my feet all day--no classroom, pushing a cart from room to room, traveling between three schools every day) that the pain would return with the intensity it had when I was still working (it had calmed down considerably since I had taken off and was sitting or laying down for most of the day at home).  Plus then I would just have to leave again for surgery.  This was April 3rd and I was scheduled to return to work April 8th.

I got a call from my principal on April 10th, notifying me that my contract was not being renewed for the following year as I was non-tenured.  They made up some crap about my attendance (for medical reasons assholes!!!) but we all know it was my extended medical leave (illegal to let me go for).  That was a huge blow and felt like I was being kicked while I was down, although in retrospect I didn't want to stay at that job anyway.  But to have that on my resume just makes my life that much harder.  Anyway, this is another whole story.

I got the injection.  And wouldn't you know it?  I didn't respond to it at all!  The hip surgeon told me that that happened about 7% of the time (omfg.....) but that he was confident enough in my diagnosis that he wanted to go through with the surgery anyway.  THANK GOODNESS!!

Anyway, to wrap things up I did get surgery on May 31st.  Dr. Harris at SoHo OBGYN saw me through all of it.  She said I could expect to have pain flares for about a year.  I had a huge one with a yeast infection in July that had me in terror and hysterics.  My fucked up flora is what started all this shit--when the tissue gets inflamed from the infection all the nerves get inflamed too.  The yeast infection came from using Pre-Seed, so no more.  I ended up having to get a cortizone injection into my pudendal nerve which calmed things down.  But I never had to do that again.  I had pain flares until October--not as bad as the one in July--but bad enough that they made sex a "thing" still.  But then it stopped.  It just went away and never came back.  I don't freak out about it as much anymore because I feel like I have Dr. Harris and I know that if I really ever need to I can get that injection, but mostly I know now that if flares do happen I can wait it out and it will dissipate.  Every once in a while I can feel it twinge a little, but it doesn't keep me from sex or tampons anymore.

I am grateful for all the knowledge that this nightmare experience has brought me.  I now know how to navigate the medical system and know that I must be my own advocate.  I am now going through another dimension of hell with gastroenterologic issues.  But that's for another post.......

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