I am going back on meds I think. I have been unmedicated for a year and a half with a short time in the middle where I went back on them. I literally can't do life anymore. I started a new job this week which is great but I remember how hard it is to work when I feel like such shit. My stomach hurts so bad that when I walk around I just hug my arms around it. It is huge all the time. I still don't know what's wrong. My gastroenterologist put me on antibiotics to try and change the flora in my gut. I got a nice yeast infection from those for Valentine's day. I also had a complete and total meltdown last night.
I told my husband that I felt that I must deserve all this shit. That I've tried so hard in my life to do the right things and be a good person and it's just gotten me nowhere. I got sick with my pelvic pain last year and lost my job and my best friend. As soon as that was over this began. I just can't take it anymore. I told him I didn't deserve him. I was mean to him because he was complaining about his job; I told him I couldn't have that conversation anymore. He is miserable because he hates his job. I am miserable because I am sick and can do nothing about it, because I am going to be 35 in three months and am still childless, because my husband is miserable and because I am straight up depressed.
I can't believe I didn't see it sooner. I have taken no joy in any of the things I like to do for months. I am a singer by nature; it's what I do, it's who I am. I am a music teacher. H and I met through music. I sing in an a cappella group and I used to love practicing and working on music; now it's a chore. Cooking and baking were big hobbies of mine, but food makes my stomach worse so even though I eat it always gives me anxiety and worry. So that's out. I don't want to do anything. I used to be so passionate about so many things in my life; now the only thing I have been passionate about is getting healthy so we could start a family................
But that's out for now too. I realize that in big huge bright lights now. We are avoiding until I get better and until we can figure out our shit. I told my husband last night that once my benefits kick in in April he should quit his job, even if he doesn't have anything else lined up. I just can't deal with him and his job misery anymore. He has no idea if he wants to work for himself or find another job. I really don't give a shit what he does as long as he is happy and making some money. I would be perfectly happy to be the main breadwinner. I feel terrible that I am so mean and short about this with him and I know it isn't really me to be this impatient and cranky and straight bitchy. I know that in reality it is because I don't feel good and I am getting to the last straw with it.
I am hoping that if I got back on meds it will help me cope a little better and just help me to get through. When (if) the time comes for me to think about pregnancy again I will cross that bridge when I come to it. The issue is that the last time I went on meds I had terrible trouble with racing heartbeat. Even when I took Lexapro, which I had taken for eleven years prior to being off of them. I hope I can find something I can handle this time around again. But whatever helps me is what I will do. I can't stand living this way anymore.
Saturday, February 15, 2014
Saturday, February 8, 2014
Fuck everything
I hate everything today. And yesterday too. I am so goddamn sick of being sick I could just scream. After all the shit I went through last year, less than three months after my surgery I came down with this weird stomach thing. It's like bloating and pain and sometimes other symptoms that come and go, but the sensation and the discomfort and pain do not go away or get better ever and there is nothing I can do that helps. I have had every test there is and nothing ever comes up. I had my pelvic pain specialist recommend the best gastroenterologist she knew of because fuck going through all these small time doctors anymore. I went to one and basically used him for all the tests so that by the time my appointment with Dr. K, my doctor in the city, rolled around I had all the test results to bring him. My other doctor said to me very casually that "sometimes these are symptoms of ovarian cancer." He had in his possession copies of all three transvaginal ultrasounds as well as a pelvic abdominal ultrasound that all showed normal ovaries. And who says that to a young woman like that?!?! I was so pissed. It was that moment that I knew I was going to go nowhere with him. I love Dr. K and will continue on with him until he says he can't help me. But so far I have gotten nowhere. I have been on the FODMAPS diet, I went gluten free for two months, I have taken a food allergy blood test--NOTHING has helped.
And the pregnancy announcements. Oh, the pregnancy announcements. They are coming in like a train that just won't stop. TWINS. FOR TWO DIFFERENT PEOPLE IN MY LIFE. I just can't anymore; I seriously can't. We had all our IF testing done and it all came up fine, but we can't pursue it anymore at this time because I need to wait at this point to resolve my stomach problems. So we are currently TTA and I HATE it. I am going to be 35 in May. We started TTC in August of 2012 when I was 33. Then pelvic pain in October 2012 and it has just been a constant steady stream of fuckery since then.
I would give anything to just feel normal again. To enjoy my life. To have the chance to be happy. To eat without freaking out. I don't understand how I could go from one illness to another so goddamn quickly when they couldn't be any less related. My doctor thought that perhaps the bloating was due to muscle dysfunction from my hip surgery, but we had to take that off the table with the onset of new symptoms. I hate being sick and not knowing what is wrong. That is the worst part. The not knowing. And today I just feel like punching walls. This is not living; this is existing. It is torture. I get so upset now when I look at our wedding photos and how happy we were and how much promise there was in our future. Little did we know what kind of shitty stuff would be around the corner.
I am starting a new job on Monday. I was so happy when I got offered the job, but I honestly am not looking forward to it at all because I just feel like such shit. I know it will be good for me, and I know it is better to be out in the workforce and not sitting at home depressed and focusing on how bad I feel. But I am always terrified that what happened to me with my last job will happen to me again (I was so sick that I could no longer work and they didn't renew my contract). I don't have the heart to face that again. I just want this to stop, and it keeps going on and on.........I feel so helpless and out of control and there is absolutely nothing I can do about it other than what I am doing.
I must have been a terrible person in a past life. I must have horrible karma. But oh well; I try to remind myself that it could be worse. That I don't have something deadly. But I don't know what I have and it's ruining my life and my husband's. What kind of a life is that?
And the pregnancy announcements. Oh, the pregnancy announcements. They are coming in like a train that just won't stop. TWINS. FOR TWO DIFFERENT PEOPLE IN MY LIFE. I just can't anymore; I seriously can't. We had all our IF testing done and it all came up fine, but we can't pursue it anymore at this time because I need to wait at this point to resolve my stomach problems. So we are currently TTA and I HATE it. I am going to be 35 in May. We started TTC in August of 2012 when I was 33. Then pelvic pain in October 2012 and it has just been a constant steady stream of fuckery since then.
I would give anything to just feel normal again. To enjoy my life. To have the chance to be happy. To eat without freaking out. I don't understand how I could go from one illness to another so goddamn quickly when they couldn't be any less related. My doctor thought that perhaps the bloating was due to muscle dysfunction from my hip surgery, but we had to take that off the table with the onset of new symptoms. I hate being sick and not knowing what is wrong. That is the worst part. The not knowing. And today I just feel like punching walls. This is not living; this is existing. It is torture. I get so upset now when I look at our wedding photos and how happy we were and how much promise there was in our future. Little did we know what kind of shitty stuff would be around the corner.
I am starting a new job on Monday. I was so happy when I got offered the job, but I honestly am not looking forward to it at all because I just feel like such shit. I know it will be good for me, and I know it is better to be out in the workforce and not sitting at home depressed and focusing on how bad I feel. But I am always terrified that what happened to me with my last job will happen to me again (I was so sick that I could no longer work and they didn't renew my contract). I don't have the heart to face that again. I just want this to stop, and it keeps going on and on.........I feel so helpless and out of control and there is absolutely nothing I can do about it other than what I am doing.
I must have been a terrible person in a past life. I must have horrible karma. But oh well; I try to remind myself that it could be worse. That I don't have something deadly. But I don't know what I have and it's ruining my life and my husband's. What kind of a life is that?
No Hashimoto's!
I had my six month appointment with my endocrinologist in January. I had seen him in July on recommendation from my OB/pelvic pain specialist in April. She had run a million tests on me (pre pelvic pain diagnosis) and found that my thyroglobulin was elevated. She suggested it might be early stages of Hashimoto's and just told me to go see this doctor. Like an asshole I forgot to ask him anything about Hashimoto's when I saw him. I called two weeks after my appointment and they told me the doctor would call me (yeah right). I had so much else going on that it just got pushed down to the bottom of my list of things I could worry about. After all, although my thyroid was slightly englarged, all my tests had come back normal and the ultrasound showed nothing abnormal. He told me to come see him again for a checkup in January. In the meantime I told my acupuncturist about this and he ran with it. He told me if I had those antibodies then I had Hashi's, end of story (a lot of his patients have it). So I started reading up about it and freaking out a little, going on a gluten free diet etc. For SIX MONTHS I thought I had it. I was terrified that my stomach problems were being cause by this disease (of which was apparently asymptomatic otherwise) and that I was going to have to deal with this forever. Well when I saw my endocrinologist I asked him about it and he told me I didn't have it. I was really shocked and insisted that he pull out the bloodwork I had brought him when I saw him in July. He told me that 95%--not 100%--but 95% of patients with Hashi's have elevated peroxidase too, which showed normal on the bloodwork I brought him from April as well as the bloodwork he did in July (and now the ones he ran in January as well). I was so happy I could have danced out of there. My acupuncturist told me that my endocrinologist is not educated and is old school and that's why he says I don't have Hashi's.
I am going with what my endocrinologist said. He's got an office at NYU Langone and graduated NYU in the 50's. I think he has some experience. Plus he's an ENDOCRINOLOGIST!!!!
I am going with what my endocrinologist said. He's got an office at NYU Langone and graduated NYU in the 50's. I think he has some experience. Plus he's an ENDOCRINOLOGIST!!!!
Sunday, February 2, 2014
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.......
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.......
Friday, January 10, 2014
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
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
Tuesday, January 7, 2014
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
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
Wednesday, January 1, 2014
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.
>^^<
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