**Warning/Disclaimer: This post will most likely deal with way too much TMI on a physical level, but also on an emotional level. I have waivered a bit about not sharing the whole thing, for several reasons, but then that would kind of diminish the point of this blog, wouldn’t it? I had wanted a safe place to honestly share this journey that I’m on and who I am. And for better or worse, there are some pretty rotten bumps in this road. So fuck it, this is a place for me to be myself. But be warned: If you’re not in the mood to read some pretty heavy stuff, then this is not the post for you.
For the rest of you, thanks for coming along for the ride.
September 11, 1975: Baby Hannah comes into this world via C-section, after 24 hours of brutally hard Stage 2 labor, during which time my mother punched out her OB. I kid you not. Relatively idyllic time (from my perspective, anyway) growing up on family farm commences and continues for the next 6 years.
1981 – 1988: From the age of approximately 6 – 13, I was routinely tortured, raped, and abused by an older cousin. It went far beyond rape, and included such games as “Let’s see how far we can shove this toilet plunger inside you.” This is important to note in this context because the damage that was inflicted to my reproductive system has been devastating and remains unresolved.
1983: Ruptured appendix. Surgery and several weeks in the hospital set that right.
1985: Hospitalized for ulcer. At the time, no one could fathom why a 10 year old should have an ulcer. And even more surprising, in hindsight, although they sent me to several counselors, and the warning signs were literally screaming at them, No One. Ever. Asked. Me . about what was going on with my cousin, or anything close to it.
1986: Begin menstruating, right on schedule. The second time, and ever since, was joined by debilitating cramps. At first, the doctor refused to treat them. After a phone call from the school nurse demanding he prescribe something as I was writhing and vomiting on her couch, he reluctantly did. No one ever questioned if there might be something else going on.
1993: First total knee reconstruction for left knee. Despite the surgeon being a complete asshole, I recovered beautifully. FYI, I had period at the time of the surgery. When I first was waking from anesthesia, it was the pain from cramps I was crying over, not my knee.
1995: The debilitating pain occurring with my period becomes more frequent – it comes every two weeks, like clockwork. After several trips to the ER and more than 1 ruptured cyst, it is determined that I am a “hard ovulator”. It still never occurs to anyone to see if there is anything more to this. I have my first (painful) pelvic exam, during which the doctor (PCP) laughs at me and tells me in future to go to an OB/GYN until “after you’ve had a kid or two and a pelvic exam is no big deal.” I am put on BCPs to help. Also, I develop severe asthma, and for the first time, am advised that I should never try to get pregnant because of my health.
1997: First total knee reconstruction for right knee. Much nicer/better surgeon, but I don’t heal “right”. The next two years consist of 2 more total reconstructions and 2 arthroscopies on this knee to try to “get it right”. There is no way to overstate the hell of those 2 years. I was in constant agony. We consulted surgeons across the East coast, including the inventor of the original surgery that had been performed on me. They cannot agree on the problem, and all want to do different, yet equally complex and debilitating surgeries. Despite my pleas, no one will consider doing a knee replacement because of my age (22). They will, however, consider doing an amputation. And God help me if I wasn’t tempted – the nerve damage that had been done was completely and totally devastating, and I was in the hospital more times than I was out. The idea of “phantom limb pain” was probably the only thing that stopped me.
1999 - 2001: In the midst of the knee drama, my digestive system completely decides to quit on me. I am completely unable to eat or drink anything, even water, experience unbelievable (upper) abdominal pain, and begin vomiting up to 30 times per day. I loose 70 pounds in 6 weeks. I am hospitalized for weeks. No clear answers are forthcoming, except that I have a “motility disorder” – your digestive system stops working. There is no reason why, except that “it is more frequent among women in their twenties, especially after surgeries.”
I am kept alive for the next year by being fed nutrients directly to my heart. As that’s a rather risky thing to do over the long term, they eventually switch to a “J-tube”. When the surgeon placed the J-tube, he commented that my intestines looked like “something you would find in a third world country.”
One bright spot: they switch medications to help the abdominal pain and my knee LOVES it. For the first time in 3 years, I am able to walk. Without crutches.
My insurance company, tired of the expenses I’m running up, drops me like a hot potato. Towards the latter part of 2001, I had stabilized somewhat. Desperate for insurance, I accepted a job with health benefits. I would work during the day, then come home and hook up to my feeding machine and do treatments all night. No one, even me, ever imagines a future including pregnancy. We are just trying really hard to imagine any kind of a future for me, period.
2002 – 2003: Very, very gradually, for no apparent explanation, my stomach issues begin to resolve. Slowly, I can begin to drink little bits, and then eat little bits. It is during this time that I meet, befriend, and begin dating Nate, my heart’s delight and treasure.
2003: It is also during this time that the ever-present “hard ovulation pain” and menstrual cramps begin broadening their horizons. They don’t limit themselves to just those times, and become an almost constant thing. My mother, and Nate, insist on me seeing an OB/GYN. In the midst of all the stomach and knee drama, I had gone off BCPs a long time ago. First time on the dildocam, Fibroid In Residence is discovered, endometriosis suspected.
October 2003: First laparoscopy done: Stage 4 Endometriosis, shitloads of scar tissue, Fibroid In Residence, and a cyst, just for the hell of it. The surgeon gets “most of the endo” and the cyst, and starts me on Lupron injections, for several years. Oh, the fun. But to be honest, the symptoms improve dramatically, and what remains is quite livable.
April 1, 2005: Nate proposes in a typically thoughtful and detailed manner. Love, love, LOVE that man. We plan to marry in May, 2006.
October 28, 2005: My father is diagnosed with advanced and very aggressive prostate cancer. They do not expect him to live until May 2006. We frantically throw everything together, including hand – sewing 6 bridesmaids dresses in 3 weeks. My sisters are amazing.
November 20, 2005: Wedding day. Despite our photographer being hospitalized the night before with Rocky Mountain Spotted Fever, of all things, and a car fire in my parents front yard as the replacement photographer was doing our photos, and many, many other mishaps, it was a glorious day, the best of my life. And yes, my father was there to dance with me and walk me down the aisle. My father and mother left for Georgia the next day, for treatment at a wonderful, highly advanced Prostate Cancer center. After aggressive treatment, my father is doing wonderfully and is thriving today.
December 1, 2005: During our 2 week honeymoon in Grand Cayman (fabulous, btw), enjoying “honeymoon type” activities, I discovered another symptom of endo raising its head: painful intercourse. For me, it was more like crippling pain after intercourse – the during part was entirely delightful. A panicked call to my OB/GYN upon our return yielded tenuous results. Perhaps he would do another lap, maybe sever a nerve in the cul de sac, if I wanted. WTF??? Research on the internet sent me consulting with the Center For Endometriosis Care in Atlanta, Ga.
March 1, 2006: We fly to Atlanta for Lap #2 with Dr. Albee at the CEC. Cannot state strongly enough how wonderful they were. We have no doubt that he saved my life. They also provided care that should be the Gold Standard for medical care. Now here’s a weird part – during this lap, even though the first surgeon had admitted that there had been areas of endo he could not remove, Dr. Albee did not find further endo. It is presumed that Lupron did its job. Instead, in addition to FIR, and another cyst, he found masses of scar tissue. So much that it had completely blocked my intestine. He thought they were going to have to remove a significant part of intestine, but after several hours of painstaking surgery, he was able to successfully restore it. I recovered from this surgery smoothly.
June 2006: Smaug begins to raise his head. We are bewildered. After ruling out a post –op infection, my OB/GYN sends me to another OB/GYN, a specialist in Philly, Dr. Suave.
2007: After an initially positive few visits wherein he promises me the world and as many children as we could possibly want , because, as he put it, “there is nothing we like better than making babies around here,” Dr. Suave is frustrated with me for not responding to his protocol. He quickly looses interest and refers me to Dr. Love.
January 2007 – December 2008: Begin treatments with Dr. Love. She is a “pelvic and sexual health” specialist. I adore her, which is a good thing, because I don’t even want to begin to tell you how “intimate” we were to get. Dildocams, bladder tests, injections-you-don’t-want-to-begin-to-imagine-where: all were de rigueur as treatment. Plus, I was referred for physical therapy. And yes, it was for internal physical therapy. Use your imagination. It is discovered that in addition to all the scar tissue, the abuse I suffered also nearly destroyed my pelvic floor, severely damaged my bladder, and caused muscle and nerve damage throughout.
January 2009: Dr. Love, upon further reflection, decides she really can’t do anything further for me until she knows what’s going on internally endo-wise, given that its been a while since my last lap. I refuse to go back to Dr. Suave. She refers me to Dr. RE for another lap.
February 2009: Although I do not want another lap, I am initially excited. I am at last referred to an RE. Maybe while she’s putting Smaug to rest she can also help us with the baby-making?? She is initially cautious and thorough, ensuring updated scans, tests, etc. I have lost count of the number of times I have now ridden that dildocam. Eventually, she also concludes that another lap is needed. She also Strongly Discourages any pursuit of baby-making at this time, citing “You have plenty of time for that, we have to get you better first.” And this is from an RE, to a patient who is 34.
March 2009 – September 2009: I drag my feet. Smaug gets worse. We take my niece, E, to the Florida Keys, where we live out one of my life-long fantasies – swimming with the dolphins. Eventually, I run out of excuses and the ability to endure Smaug’s increasingly devastating rampages – they leave me helpless – crying and vomiting in agony for days on end, unable to uncurl from a fetal position. I schedule the third Lap.
September 15, 2009: Third lap. We discover Jack Shit. No endo, a little scar tissue, FIR, another cyst. Nothing that would explain Smaug. And no, she did not find a fire-breathing dragon curled up on my left ovary. He must have borrowed The Ring, and was therefore invisible. It’s as good an explanation as anyone else has come up with. In the recovery room, she assures me “not to worry, together, we’ll get to the bottom of this, together, we’ll figure this out and get you better.” She includes an assortment of follow-up options she’d like to pursue at my post-op appointment.
October 2009: At post- op appointment, she has seemingly forgotten all the follow up she’d wanted to pursue. Nate helpfully reminds her. She’s non-committal at best. Then comes out and says she doesn’t think she can do anything further for me, has no other recommendations or referrals. I guess she didn’t want to break up with me in the Recovery Room. I am spitting mad, can do nothing but cry in the car. Nate feels helpless and gets snapped at for “acting like a man” and offering pointless suggestions in an effort to “fix things”.
November 2009 –February 2010: It is suggested that I might have a genetic disorder called “Acute Intermittent Porphyria”. Getting tested and the results is an absolute mind fuck. First I have it, then I don’t they had performed the wrong test, then they’re Not Certain – the results are somewhat positive. But frankly, it doesn’t look like that’s the answer. In the mean time, holy hell breaks loose when it appears the motility disorder that nearly killed me 10 years ago is raising its head again. For about 2 months, it’s very hard to eat or drink anything, and it’s a really shaky time. Am referred to Dr. Big, the GI specialist to see. In the time it takes to actually schedule the tests he suggested, the hospital goes on strike, and my symptoms vastly improve. He suspects nerve damage to the abdomen causes Gastroporesis, and in this instance, it was triggered by food poisoning.
March 2010 – Present: Now what?? I have no fucking clue. I go back to see Dr. Love at the end of May, and we’ll see where we go from here. I also have a PCP I adore, Dr. Saint, and she and I have worked out some things to try. #1 – Going off BCPs. This was my idea because I really don’t think they’re doing anything, and they may be masking things. But the flip side is maybe they really have been keeping endo in check and coming off will only Aggravate Things. So we’ll try for 2 months and see what Smaug thinks of that.
Also on the recommendation block is going to the Mayo Clinic. This is highly favored by Nate, my Mom, Dr. Saint, and Dr. Big. There is just simply too much unresolved medical shit going on to continue with a fragmented approach. But this scares me, because to me, they are the Place Of Last Resort. And what happens if the Place Of Last Resort also has no definitive answers? Dr. Saint advises me to see how long the wait to get an appointment is, and get my truckload of records together so that if/when I do decide to go, I will be all ready.
So that sums up the Most Important Bits. I did not include the lesser stuff, so though it might seem like it’s a catalogue of every cough and hiccup, it’s not. Through all this, Nate has been a rock. There are no words. Despite my reference to snapping at him before, when he sets his mind to it, which is quite often, he is the best listener ever. And sometimes he knows just when to say nothing and let me sob in his arms. And other times he gives me the push I need to pursue the Next Step. And through it all, he loves me for who I am.
For those of you who have made it through reading this far, thanks for sticking with it. 