I have to start from the beginning, but I think if you really were to examine it, many of these stories start back in our own conceptions, and the genetics that are passed on at that moment of quickening. I have two Italian parents, and my aunts, cousins,... even my mother had fibroids. Breast and uterus. You'd think that would've meant that I had all the information I could possibly need, that the minute this happened all was revealed and I could walk comfortably in the direction fate seemed to be taking me. But that was hardly the case. Generations before mine seemed to have been lead directly to the operating room, with little understanding that it was the inevitable end to the issue of having an uninvited, albeit graciously benign mass living where a baby should be. And it must have been hard for them in a family like mine -- large Italian families. My godmother, who's oldest daughter was born the same year I was, conceived my youngest cousin in my virginal bed while I was away at college. It ain't over til it's over. My mother's first fibroid was found when she was pregnant with me -- I apparently just beat it in to submission, in utero. I am afraid for all the relief that knowing I didn't have cancer brought, perhaps because of my own pre-cognitive embyronic victory over my own uterus-mate, I was radically opposed to remove an entire organ from my body without that dreaded diagnosis. Frankly, my body had been through enough, tough little cookie that it is, and it deserved better. And so did I. I was too young to never be able to have another baby. My creative power meant more to me than the perceived peace of mind the doctor who diagnosed me thought getting rid of it would bring.
It had been an obnoxiously stressful time. I had my first child. He was glorious the moment of arrival. I had been fluctuating around 105lbs when I conceived him (with of course a little help) and he was born just under 10lbs. Ouch. But worth it of course. He outnumbered me on sight and sound. I turned, looked up at him, screaming and alive and HUGE, and I said to my doctor "just give him the keys to the car and tell him I'll meet him at home". The vaginal delivery had been, well, a little rough. We had no idea how large he was going to be until my water broke. The nurse just said "WOW". But he was healthy, and aside from a 3rd degree episiotomy with some tearing, I had managed to survive as well. Less than a week later I was back on the table with a post-partum infection that weakened me, and turned his baby eyes yellow with the antibiotics given to me that he ingested, however safe for newborns, in my breast milk. Nothing had been left behind, the episiotomy was clean, and the infection, it was speculated, was due to injury in delivery, perhaps even from in-utero kicking. To this day I occassionally mention it, when he gets into those moods when he acts like a rock star...
He nursed into his second year, but when he was ready to move on my supply was still so strong, a Med student from Duke came by to pick up frozen breast milk by the case for the AIDS and drug-addicted babies in the NICU who couldn't drink formula or their own mother's milk. It all sounds very altruisic I suppose but truth is I had gotten use to my full C cup and the body I had so strived for as an aspiring dancer suddenly seemed boyish and inadequate after experiencing its awesome creative power first hand.
Baby two was conceived while I was still lactating. She tried to kill me in-utero, but was viamently prayed for, and though I threw up into my 6th month, suffered a long string of illnesses, from a pre-delivery mastitis infection, to bronchititis, to pnuemonia, and back again, she was born, induced a 8.5lbs, effortlessly. She was like butter and remains sweet and comforting and delicious to this day -- if such a thing can be said of a child.
She nursed for three years, When she began to whine "Mommen, I want booben juice" it seemed obvious to me that any kid who could say it, was ready to be past it. I was her night time pacifer and my body was replaced by cuddling and THE LITTLE PRINCE, THE COOKIE TREE, and THE WIND IN THE WILLOWS.
SO I got my body back. With the "baby girl" in preschool I was in kick-boxing or pilates and working out 5 mornings a week. I settled into the "ZONE" diet and my energy level soared. I "was back". The kids would catch me in the living room working out and I would chase them back to "The Magic School Bus". I started back to my performance work and was carving out space for my own aspirations.
And then grandmother's began to get sick and aged and needed me. My son, who was found to be hearing impaired at 9 months, fought his battles to learn, and we spent long hours at speech therapy, long drives to a Montessori program 45 minutes away from where we lived, and got the procedures he needed to become the marvel he is today. Siblings had crises. And there was a move. Towers fell in NY and we were at war. Servicemen packed up and left the country they served.
And amidst the rubble of 9/11, something inside me needed to grow. I understand now that, if your don't keep growing and creating, your body will find a way to grow and create on its own. The manifestation of that is not always healthy. A woman's body is a force of nature -- nurturing, miraculous, and occassionally, chaotic.
Sunday, November 15, 2009
Saturday, November 14, 2009
The Discovery
I still hadn't found a new OB/GYN when the first sign happened. I was walking the dog. She was old, but keeping her walking a couple miles a day seemed to keep her creaking hips more supple. We were hiking along, and I felt an unscheduled gush. I had been on the pill since the littlest had weened so I had been regular, as I have always been, since my period had resumed. It wasn't a friendly little trickle. It was demanding. No ebb and flow. It was chaos.
I went to a clinic first, as I was leary to just look someone up in the yellow pages and had not found any of my researched choices had space for new patients. The nurse was neither encouraging nor was she sensitive. More like an auto mechanic looking under the hood of a machine than a health care giver peeking into my sacred instrument. Not quite indifferent but absolutely positive and resolute in her evalution of the situation. "We should just schedule you for a hysterectomy now". She had me go directly to the doctor on duty following the pap smear and he said -- "you'll just feel better when you get this out. You won't have to worry and you already have two children". I begged to ask why a hysterectomy was necessary, did I have cancer. "A very low percentage of fibroids develop into cancer, but removing the uterus will give you the peace of mind that you will never have to worry about uterine cancer after this. I've done so many of these surgeries and it's the right thing" his reply rote."Does this mean I will have to live without uterine orgasm" I asked, quite directly, because I didn't like this guy for so many reasons -- dismissive, disrespectful, and frankly, he seemed more interested in his own control and convenience where my diagnosis was concerned. "They're a myth" he replied without much sensitivity... "Screw you buddy" I thought to myself "the myth is ALIVE in my bedroom". I suspect the only people who believe this propaganda are people who have either never had one, or do not have the mastery to give one to their lovers. And do you know what they call med students who graduate from some tropically located "medical school" with a D average -- they call them DOCTOR. Harsh, but there it is. I, and my plum sized mass, never went back.
I went to a clinic first, as I was leary to just look someone up in the yellow pages and had not found any of my researched choices had space for new patients. The nurse was neither encouraging nor was she sensitive. More like an auto mechanic looking under the hood of a machine than a health care giver peeking into my sacred instrument. Not quite indifferent but absolutely positive and resolute in her evalution of the situation. "We should just schedule you for a hysterectomy now". She had me go directly to the doctor on duty following the pap smear and he said -- "you'll just feel better when you get this out. You won't have to worry and you already have two children". I begged to ask why a hysterectomy was necessary, did I have cancer. "A very low percentage of fibroids develop into cancer, but removing the uterus will give you the peace of mind that you will never have to worry about uterine cancer after this. I've done so many of these surgeries and it's the right thing" his reply rote."Does this mean I will have to live without uterine orgasm" I asked, quite directly, because I didn't like this guy for so many reasons -- dismissive, disrespectful, and frankly, he seemed more interested in his own control and convenience where my diagnosis was concerned. "They're a myth" he replied without much sensitivity... "Screw you buddy" I thought to myself "the myth is ALIVE in my bedroom". I suspect the only people who believe this propaganda are people who have either never had one, or do not have the mastery to give one to their lovers. And do you know what they call med students who graduate from some tropically located "medical school" with a D average -- they call them DOCTOR. Harsh, but there it is. I, and my plum sized mass, never went back.
Friday, November 13, 2009
Doc #1 - good intentions, discouraging staff
So I found my second doc in the saga. She was a lovely lady. I still refer her to friends who aren't high risk gynocology cases. High risk pregnancies she's great with. She was sensitive and took her time. She looked at my slides and agreed that I had a submuc fibroid, meaning, it was attached and partially part of the uterine wall.She counselled me on diet, exercise, explained to me the importance of lowering my estrogen and entertaining all my myriad questions as I scoured the internet for information on how to save my uterus. She helped and supported my decision to live with this thing, and understood my hopes to wait it out until menopause, though that would be a decade or two away. I cut out meat and diary, caffiene and most white things -- sugar and white flour that add fat to a body, where estrogen lives. We tweeked my pill rx to try to eleviate the bleeding. She tried very hard to do everything she could. She ordered an ultrasound that involved what seemed a bit like a radio-active banana. She diagnosed and saw me through my breast fibroids. She once again supported me when I left those in, which had grown at the site of my previous mastitis infections and occassionally sprouted angry and swollen cysts. But I was healthy, for all extensive perhaps. I was cancer free and living my life with my fibroids.
Every now and then I would pass what looked like afterbirth. Large clots the size of gold balls. I use to call my friend and we would name them, it seemed so perposterous. But I was hanging in there. We had taken a hike once, up a mountain and to a lake on it's summit and I had bleed through my pad, down my leg, by our ascents end. I had taken commerical work, having cramped through the night and gotten a ride to set, kept erect only with Vicadin.
My friend and I took a trip, 2 or so years after they had found my uterine fibroid, two years into my semi-vegan diet (I was still eating occassional fish), to Puerto Rico. I knew that keeping my weight in control meant keeping the estrogen that fed the fibroid in control. But I was on vacation! We ate duck at FIREFLY. I felt so rebelious. It tasted SO good. The day I got back, I began to hemorage. My paranoid fantasy still tells me it was the meat, but who knows. Off schedule bleeding was nothing unexpected now, but this was different. A pad every 15 minutes. It went on for too long.
I had long been unable to use tampons, because the mass would so swell during my period that it would physically push the tampon out. By now I was carrying a mass the size of a grapefruit. The last time I had used one it had been pushed, too dry to easily remove, half way out. I was shopping at the time and had to go home, uncomfortable and feeling like the saying (get that stick out of your ass) in a literal sense. I sat in the bath and waited for the dislodged paper bullet to moistent enough to ease out.
Lying on my living room floor, because I was nearly unconscious from the blood loss, I had no idea that I should have been in the ER getting a transfusion. I had no idea I was in danger of bleeding to death. Next day I was in Doc#1's office and she was aghast. I was grey. I was too thin, somewhere around 100lbs. She took my blood. I was critically anemic. I should have had a transfusion. She THEN told me the guidelines for blood loss. Looking back I am the one who is aghast that this had not been discussed on my first visit, when my adrenaline was still so high I retained every work, researched every syllable. By this point, I was exhausted. I was put on a level of iron that made me unavoidably nauseous and surgery was scheduled. She promised it would only be the mass. She promised.
But every time I called for the pre-ops, the nurses referred my surgery as a Hysterectomy. "No" I said "It's just going to be a myomectomy". "Well, with a mass this large, it will actually be a hysterectomy". When I talked to DOC she said she would try to only take the mass, but if my life was in danger, she'd save it. I believed her, but those nurses, they scared me. They were so certain. I began to look for alternatives. My confidence had been seriously shaken.
Every now and then I would pass what looked like afterbirth. Large clots the size of gold balls. I use to call my friend and we would name them, it seemed so perposterous. But I was hanging in there. We had taken a hike once, up a mountain and to a lake on it's summit and I had bleed through my pad, down my leg, by our ascents end. I had taken commerical work, having cramped through the night and gotten a ride to set, kept erect only with Vicadin.
My friend and I took a trip, 2 or so years after they had found my uterine fibroid, two years into my semi-vegan diet (I was still eating occassional fish), to Puerto Rico. I knew that keeping my weight in control meant keeping the estrogen that fed the fibroid in control. But I was on vacation! We ate duck at FIREFLY. I felt so rebelious. It tasted SO good. The day I got back, I began to hemorage. My paranoid fantasy still tells me it was the meat, but who knows. Off schedule bleeding was nothing unexpected now, but this was different. A pad every 15 minutes. It went on for too long.
I had long been unable to use tampons, because the mass would so swell during my period that it would physically push the tampon out. By now I was carrying a mass the size of a grapefruit. The last time I had used one it had been pushed, too dry to easily remove, half way out. I was shopping at the time and had to go home, uncomfortable and feeling like the saying (get that stick out of your ass) in a literal sense. I sat in the bath and waited for the dislodged paper bullet to moistent enough to ease out.
Lying on my living room floor, because I was nearly unconscious from the blood loss, I had no idea that I should have been in the ER getting a transfusion. I had no idea I was in danger of bleeding to death. Next day I was in Doc#1's office and she was aghast. I was grey. I was too thin, somewhere around 100lbs. She took my blood. I was critically anemic. I should have had a transfusion. She THEN told me the guidelines for blood loss. Looking back I am the one who is aghast that this had not been discussed on my first visit, when my adrenaline was still so high I retained every work, researched every syllable. By this point, I was exhausted. I was put on a level of iron that made me unavoidably nauseous and surgery was scheduled. She promised it would only be the mass. She promised.
But every time I called for the pre-ops, the nurses referred my surgery as a Hysterectomy. "No" I said "It's just going to be a myomectomy". "Well, with a mass this large, it will actually be a hysterectomy". When I talked to DOC she said she would try to only take the mass, but if my life was in danger, she'd save it. I believed her, but those nurses, they scared me. They were so certain. I began to look for alternatives. My confidence had been seriously shaken.
Thursday, November 12, 2009
DOC #2 - the embolism
So I looked further into alternatives. I went macrobiotic. I embraced shark cartilage, hoping the miracule stories I was reading would be my own. I saw a medical intuitive, who talked alot about Chakra's and damaging ancestral men and the female collective consciousness and victimization and repressed anger and a lack of mentoring females. But I hadn't completely given up on western medicine, and I was no longer interested in wasting any time. The mass was making my daily decisions for me -- if I could work out, if I could work, what I could wear. It wasn't shrinking. My daughter, young, beautiful, impressionable, was watching her mother rithe in pain regularly, because of a problem uniquely female. This was no time to pussy foot around. I was only going to co-habitate with this little friend of mine, telling me all these things I wasn't willing to admit to myself, if she would behave and stop trying to take over.
Enter DOC #2. A really truly nice guy. He was actually a specialist. DOC#1 knew what I was doing, but I was outsourcing my surgical care. I let her know respectfully and thankfully, but she would not be my doctor again. Had those phone calls been different, perhaps this story would be ending differently. But it is ending well. Doc#2 is part of that journey.
Technically he was an Radiologist. The procedure was relatively cutting edge at the time, and there were side effects, but overall, it was the least evasive, least bloody alternative that allowed me to keep myself whole. It would stop the blood supply to my vampirous friend and she would slowly wither and shed or be absorbed into my body. The cramping would end. The blood loss would end. I could have my life and my body back. It would likely make conception difficult, but at least there would be some small chance. I was ready to take the chance. He looked at my slides, had a few other doctors consult on it. I went in for an MRI the week before I was leaving for England for a month. The day after my return I would have the procedure if the MRI looked right to him.
NOW I have to tell this story because, come on, life is too short and so many wonderful things happen in the midst of challenge. My kids came with me to my MRI. My son, who was a bit of an expert on such tests wanted to go -- he said he knew what it was like and he wanted to be there to support me. Pretty lucky mom, you must admit. Little did I know that his real intention, as we drove the hour to the MRI facility (because I had long exhausted the pool of doctors in my home city and was now traveling to a larger city North of home for my fibroid care) my son, bless his comic heart, immitated the sound I was going to hear while receiving my first MRI. NANANANANANANANANANANANANANANAAAAAaaaaa. From the back seat, every couple minutes... brat. It certainly made the test itself less of a surprise, and curiously less exasperating. His sister however, who was in the backseat living through this with us, still rolls her eyes at the memory.
It was agreed. the MRI and slides looked like I was a good candidate for the procedure. They could cut a tiny hole in my groin and insert a cathater into a vein leading to my uterus. Small pellets would be pushed through the tube and into the vein, leading to the fibroid, cutting off its blood flow. I would be cathaterized and IVed and on valium. My hospital stay would be a day or two. I was ready, and relieved, and hopeful.
The trip to England was glorious, as England always is. No meat pies or blood pudding for me of course, but mushy peas and chips with vinegar suited me just fine. Only concern -- I would inevitably bleed and have to endure a period cycle in my time there. I was scared if I passed out and was found, taken to a hospital unconscious that all my hard work would end in a hysterectomy if I wasn't proactive. So, and this seems crazy, but I took a sharpie to my abdomen and wrote my blood type, my diagnosis, and in large letters NO HYSTERECTOMY. I'm not kidding. I cramped and bled through my days, but I wouldn't have missed that trip for the world. I just practiced taking a step forward in faith that everything was happening as it was suppose to.
Jet-lagged and foggy I was at the hospital the day after I got back. The foley cathater was perhaps the most obnoxious thing I have ever had to endure. It took the nurse 6 punctures to find a vein. It was hard to stay hydrated, particularly when travelling. I wanted to watch the whole thing. That didn't happen. I watched it go in, giggled and rambled as I do, but don't remember a conscious moment after saying "hey, look at that". It felt like 15 minutes had lapsed when they wheeled me out.
The nurses who rotated in and out of my recovery room where, well, a bit overwhelmed. This seems a theme. My post-op was not complex, but I had to start writing down what I was being given and asking "wasn't I suppose to get an antibiotic this visit". I thought, good thing I'm conscious or I'd need an advocate. It kind of blew my mind that I couldn't just take for granted that the regiment my doctor had set up would be followed, no doses forgotten or delayed. Telling I think. Perhaps we need to give our nurses fewer patients and more time to keep organized and put out the fires that nurses do, in order to work competently. It happened with almost all the nurses who visited me. It wasn't about any one person's lack of ability. It was a trend, a "situation". Too few nurses, doing too much work. I was happy and hopeful to get home.
Enter DOC #2. A really truly nice guy. He was actually a specialist. DOC#1 knew what I was doing, but I was outsourcing my surgical care. I let her know respectfully and thankfully, but she would not be my doctor again. Had those phone calls been different, perhaps this story would be ending differently. But it is ending well. Doc#2 is part of that journey.
Technically he was an Radiologist. The procedure was relatively cutting edge at the time, and there were side effects, but overall, it was the least evasive, least bloody alternative that allowed me to keep myself whole. It would stop the blood supply to my vampirous friend and she would slowly wither and shed or be absorbed into my body. The cramping would end. The blood loss would end. I could have my life and my body back. It would likely make conception difficult, but at least there would be some small chance. I was ready to take the chance. He looked at my slides, had a few other doctors consult on it. I went in for an MRI the week before I was leaving for England for a month. The day after my return I would have the procedure if the MRI looked right to him.
NOW I have to tell this story because, come on, life is too short and so many wonderful things happen in the midst of challenge. My kids came with me to my MRI. My son, who was a bit of an expert on such tests wanted to go -- he said he knew what it was like and he wanted to be there to support me. Pretty lucky mom, you must admit. Little did I know that his real intention, as we drove the hour to the MRI facility (because I had long exhausted the pool of doctors in my home city and was now traveling to a larger city North of home for my fibroid care) my son, bless his comic heart, immitated the sound I was going to hear while receiving my first MRI. NANANANANANANANANANANANANANANAAAAAaaaaa. From the back seat, every couple minutes... brat. It certainly made the test itself less of a surprise, and curiously less exasperating. His sister however, who was in the backseat living through this with us, still rolls her eyes at the memory.
It was agreed. the MRI and slides looked like I was a good candidate for the procedure. They could cut a tiny hole in my groin and insert a cathater into a vein leading to my uterus. Small pellets would be pushed through the tube and into the vein, leading to the fibroid, cutting off its blood flow. I would be cathaterized and IVed and on valium. My hospital stay would be a day or two. I was ready, and relieved, and hopeful.
The trip to England was glorious, as England always is. No meat pies or blood pudding for me of course, but mushy peas and chips with vinegar suited me just fine. Only concern -- I would inevitably bleed and have to endure a period cycle in my time there. I was scared if I passed out and was found, taken to a hospital unconscious that all my hard work would end in a hysterectomy if I wasn't proactive. So, and this seems crazy, but I took a sharpie to my abdomen and wrote my blood type, my diagnosis, and in large letters NO HYSTERECTOMY. I'm not kidding. I cramped and bled through my days, but I wouldn't have missed that trip for the world. I just practiced taking a step forward in faith that everything was happening as it was suppose to.
Jet-lagged and foggy I was at the hospital the day after I got back. The foley cathater was perhaps the most obnoxious thing I have ever had to endure. It took the nurse 6 punctures to find a vein. It was hard to stay hydrated, particularly when travelling. I wanted to watch the whole thing. That didn't happen. I watched it go in, giggled and rambled as I do, but don't remember a conscious moment after saying "hey, look at that". It felt like 15 minutes had lapsed when they wheeled me out.
The nurses who rotated in and out of my recovery room where, well, a bit overwhelmed. This seems a theme. My post-op was not complex, but I had to start writing down what I was being given and asking "wasn't I suppose to get an antibiotic this visit". I thought, good thing I'm conscious or I'd need an advocate. It kind of blew my mind that I couldn't just take for granted that the regiment my doctor had set up would be followed, no doses forgotten or delayed. Telling I think. Perhaps we need to give our nurses fewer patients and more time to keep organized and put out the fires that nurses do, in order to work competently. It happened with almost all the nurses who visited me. It wasn't about any one person's lack of ability. It was a trend, a "situation". Too few nurses, doing too much work. I was happy and hopeful to get home.
Wednesday, November 11, 2009
After the Embo
The days after the embolism seemed to just get better and better. I was working out just a week or so after my return home. As much because of continued jet-lag made more complex by narcotics. I was off narcotic pain killers quickly. I hated them -- I contend that rather than taking away pain, they just make you too stupid to complain. My hiking, clot naming friend came and nursed me and fed my kids and behaved like the family that she is. A nurse called me every couple days post-op. I had had an argument on the phone with a family member the day after my surgery. The nurse said "there are only two kinds of people in your life when you are in recovery -- those who are part of the solution that is your recovery and those who are a challenge to it, and may even be part of a problem that is the reason you are recovering... you don't have to apologize to the later; just avoid them until you are recovered and strong and able". It gave me permission to snuggle with my kids and watch television. It gave me permission to not answer the phone. It gave me permission to say yes when help was offered and no when demands were made. Some of the best medicine can be administered over the phone.
I tried eating some meat, but that was slow going. It was hard to digest. I went little by little. I was working out again. I resolved the long distance conflict with my extended family. I learned to demand some of my rights, so to speak. I embraced the possibility of more challenging work. I talked with my daughter, about pain, about being a woman, about how much having a baby, having her, had been worth the pain, and listened to her thoughts and fears and anger. This thing had taken me away from her at times. It hurt the people around me.
My first period after the embolism was a revelation. Gloriously lacking in eruptive mess. No clots. No serious cramping. I felt out of the woods. I had done the right thing. It's true of course, I had, but I wasn't prepared for what was just around the corner.
Three months after the embo, though no longer in fear of blood loss, I started to have pain again. Cramping. Painful and intense and rhythmic. At first I tried to wave it off. I tolerated it for about 2 months. Then I called my Embo guy. He referred me to two doctors; a GI guy, and another OB/GYN. GI guy first, lots of fun. I had gained a little weight, but I was definitely having some GI issues, just not sure why. He recommended a high fiber diet to help with elimination and talked about the effects of narcotics of the digestive system. You should have seen that waiting room -- not happy people.
Then I met this new OB/GYN. A new chapter begins.
I tried eating some meat, but that was slow going. It was hard to digest. I went little by little. I was working out again. I resolved the long distance conflict with my extended family. I learned to demand some of my rights, so to speak. I embraced the possibility of more challenging work. I talked with my daughter, about pain, about being a woman, about how much having a baby, having her, had been worth the pain, and listened to her thoughts and fears and anger. This thing had taken me away from her at times. It hurt the people around me.
My first period after the embolism was a revelation. Gloriously lacking in eruptive mess. No clots. No serious cramping. I felt out of the woods. I had done the right thing. It's true of course, I had, but I wasn't prepared for what was just around the corner.
Three months after the embo, though no longer in fear of blood loss, I started to have pain again. Cramping. Painful and intense and rhythmic. At first I tried to wave it off. I tolerated it for about 2 months. Then I called my Embo guy. He referred me to two doctors; a GI guy, and another OB/GYN. GI guy first, lots of fun. I had gained a little weight, but I was definitely having some GI issues, just not sure why. He recommended a high fiber diet to help with elimination and talked about the effects of narcotics of the digestive system. You should have seen that waiting room -- not happy people.
Then I met this new OB/GYN. A new chapter begins.
Tuesday, November 10, 2009
DOC #3 - The Holy Spirit
I've got to say in retrospect, everything happened perfectly. If the,... (I really can't think of anything to call him that doesn't involve an explective) doctor hadn't sent me rushing in horror to well-intentioned OB/GYN#1 (let's call her "the father" - the original creator of my fibroid care), who's contradicting nurses hadn't sent me to Doc#2-radiologist extraordinaire ("the son" who was the first doctor to actually interact with the vampire), I would have never found Doc#3 ("the holy ghost" who transcends the physical and takes your spirit with her). I won't take the metaphor to far yet, because our first few months together were pretty profound on their own.
Doc#2 had given her my charts, so she knew a bit what was going on -- or at least what HAD been going on. No one could figure out why I was still in pain. She asked the pointed question about why I hadn't gotten the hysterectomy. She prefaced it actually -- "I know you are a little bit to young to have to answer this question". WOW, I thought, she realizes this, it is obvious that I want my uterus just because I'm not old enough not to want it's hormonal influence, to need its contribution to my body as a well built machine -- each organ playing its part. Yes, I told her I wasn't ready to give up on more children. Yes, I told her, I want the long term health benefits. But, and with emphasis I stated without apology, or blinking an eye "I believe in uterine orgasm, I HAVE uterine orgasm, even now. I intend to be 80 and still having uterine orgasms... Pretty hard without a fricking uterus". She smiled. She giggled. She respected it. I had found my OB/GYN. At last. We finally got to consider this in the context of my sexuality, my spirit, my overall health, not just the health of my physical machine.
AND SEX! Can we talk about sex, because no one else did until Doc#3. Candid discussion. And not just about the mechanics of having sex with this thing, but the emotional concerns, the paranoid fantasies, the straightforward mechanics of it. I began to journal and realized that sex both triggered my pain and relieved it, depending on the timing, on my level of wanting the sex, on my exhaustion level, on the position. Her advice was concrete and usable and helpful and respectful. Which is good because sex is an emotional mire, and I would have had absolutley none of it if I hadn't been able to figure out how it was going to work, with her, and had the patient loving partner, who thank you very much, was not interested in long term sexlessness for either of us. He demanded I have a quality of life. A full life. That means sex.
And we soldiered on... and things got better and worse and better. Then one day... they nearly became tragic.
Doc#2 had given her my charts, so she knew a bit what was going on -- or at least what HAD been going on. No one could figure out why I was still in pain. She asked the pointed question about why I hadn't gotten the hysterectomy. She prefaced it actually -- "I know you are a little bit to young to have to answer this question". WOW, I thought, she realizes this, it is obvious that I want my uterus just because I'm not old enough not to want it's hormonal influence, to need its contribution to my body as a well built machine -- each organ playing its part. Yes, I told her I wasn't ready to give up on more children. Yes, I told her, I want the long term health benefits. But, and with emphasis I stated without apology, or blinking an eye "I believe in uterine orgasm, I HAVE uterine orgasm, even now. I intend to be 80 and still having uterine orgasms... Pretty hard without a fricking uterus". She smiled. She giggled. She respected it. I had found my OB/GYN. At last. We finally got to consider this in the context of my sexuality, my spirit, my overall health, not just the health of my physical machine.
AND SEX! Can we talk about sex, because no one else did until Doc#3. Candid discussion. And not just about the mechanics of having sex with this thing, but the emotional concerns, the paranoid fantasies, the straightforward mechanics of it. I began to journal and realized that sex both triggered my pain and relieved it, depending on the timing, on my level of wanting the sex, on my exhaustion level, on the position. Her advice was concrete and usable and helpful and respectful. Which is good because sex is an emotional mire, and I would have had absolutley none of it if I hadn't been able to figure out how it was going to work, with her, and had the patient loving partner, who thank you very much, was not interested in long term sexlessness for either of us. He demanded I have a quality of life. A full life. That means sex.
And we soldiered on... and things got better and worse and better. Then one day... they nearly became tragic.
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