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.......
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