Take a look…do you think it was 3/7/1986 (which would make that 31 years ago today)? or do you think it was 3/5/1986? It’s hard to tell for sure!
Take a look…do you think it was 3/7/1986 (which would make that 31 years ago today)? or do you think it was 3/5/1986? It’s hard to tell for sure!
While I happened to be home during one of my recent visits, I found the Basal Body Temp (BBT) chart that I was conceived on in 1986. My mom still has it! We looked at it together, it looks like I was conceived on either March 5th or March 7th. So in honor of it being nearly 31 years ago around this time, I figured I should finally dedicate a post to the ties between my mother and I regarding stage IV endometriosis/endometriomas on the ovaries, and my very unusual and unprecedented birth. Even though I grew up my entire life knowing most of the details (about being born in an emergency with my father having to deliver me in the upstairs bathroom of my parents’ house!), and even though my mom has regularly told me throughout my life things like, “We worked SO hard to get you,” and, “I’m so happy you’re here,” I guess I must’ve taken it for granted, and didn’t want to imagine that I’d find myself in a similar situation many years later. It’s nice that I have my parents to lean on and relate to, and that they’re still alive and cognizant and can share anecdotes regarding their own infertility journey and my mom’s battle with her autoimmunity through endometriosis. For that, I’m thankful. But of course, I still wish that they hadn’t had to go through this. And my mom chooses to not speak of it that much, though those closest to her know about their difficulty in trying to have me. Recently, when I was telling my mom that March is Endometriosis awareness month and I posited as to why she didn’t insist back in the 80s that more research be dedicated to this disease (and other conditions that result in infertility), she said that she had made peace with her infertility and Endo after she had me and didn’t want to harp on it. I, however, will never let go of what I’ve gone through in our short time since the ER and pains and attempts to conceive since then, and I think that personal stories can serve as inspiration to others who are going through the same thing.
My parents were told that they’d never have biological children. When Dr. B. said this to me back in October, and I was crying hysterically for over a week and couldn’t sleep or keep my heart rate down, I asked my dad at that time, how he learned to adjust when they were told they’d never have children. He said he immersed himself in his other interests, work, gardening, beer brewing (though he stopped this a few years later and switched to wine, saying that beer gave him the stomach hernias and likely led to the surgeries he’s had for those), etc. He said it was rough when they’d been trying for a few years and then when his sister-in-law and brother announced they were expecting my cousin Travis in 1985; apparently my mom was very very upset, even though when I’ve asked her about how she coped with everyone else being able to conceive easily she said she was never that disappointed. So I guess I get my emotions from her. In a way I’m glad that it’s not just my thyroid making me sensitive and emotional.
On a positive note, infertility from this condition has allowed my parents and I to bond in a way I never even had quite envisioned I’d also go through. It was surreal to turn 30 last November, learning for the first time from my parents that they actually thought I was not alive the first few moments after my birth…and what they had to go through. My mom said that she looked down and noticed my feet were hanging out of her!!!!!!!!; she screamed to my dad and he jumped on the phone with the doctor, who coached him through the entire delivery process (my mom kept insisting to me that she never had contractions or water breaking, and that I was only 10 days early, considered a full-term, low-birth weight baby at 3 lbs. 15 oz., feet first). I was born in the upstairs bathroom of my parents’ house, and my mom said after I was out she actually couldn’t bear to look at me, as I wasn’t moving or making any sound, I just turned blue and she heard me make a gurgling noise……..she said she was terrified I’d likely fail the APGAR tests and everything. It was only when the EMTs arrived and placed her on the stretcher and then me on her belly in the ambulance that she noticed my eyes were moving around, and every so often they would refocus and meet her own. At that point she said she knew I would be alright.
My parents weren’t ever able to have any other children, which affected us all in different ways. They did try for a few years thereafter, but not that seriously. I asked my mom recently and reminded her that one is super fertile after just having given birth. But she said they only started with IUI treatments and sperm washing by the time I was 3/4, some more injections, but then she eventually turned to my dad and said it wasn’t worth it, that she was happy with me and that she needed to focus on taking care of her aging and declining parents. I guess he agreed to that. My mom was totally fine with that, as she said she always grew up only wanting a little girl like herself. My dad, however, admitted he would have liked the chance to have had a son. And I’m sure you’ve heard me wail about desperately wanting a sibling my entire life and how I bugged my parents endlessly about it as a kid. I even got in trouble in Kindergarten-for some reason, my parents didn’t hide the fertility injections from me, so I must’ve seen them, asked them about them, then didn’t filter that info out and shared it to my teacher at school, simply saying, ‘my parents give each other shots.’ She thought my parents were using cocaine and heroin, called them in for a conference My parents were pretty upset, so they immediately put me in Catholic school starting from 1st grade on, despite my mother’s bad experience with it growing up (and the fact that my dad isn’t even catholic, though before they got married he had agreed to raise any potential children as catholic). I’m still pretty bitter about it, but I guess I am happy that I had pretty decent experiences in high school and am still in touch with a couple good friends from my time there. This is why, when one of my students last year kept licking me, hugging me, and patting my belly and asking if there was a baby (which was tough, I had to lightly mention thyroid disease and the elimination of one’s normal metabolism…if you can even somehow touch on that with a PreK student), I finally started telling her at the end of the year to remember that her teachers in Kindergarten may not appreciate her doing these things, that big girls and big boys in Kindergarten must act a certain way while at school and that these behaviors would only be still appropriate at home. I was afraid she’d possibly have the same misunderstanding happen to her, or something similar.
I’ve accepted that if I never have children, my students will always be my kids and I’ll be able to leave my mark on the world in this way hopefully. My mom went through a lot; she had her right ovary removed in 1961 as a teen as it was dominant and had a grapefruit-sized endometrioma on it…apparently my maternal grandparents allowed the same general surgeon to do this via laparotomy, which is the same surgeon who had done my grandmother’s total hysterectomy since she developed uterine fibroids later in life. (I’ve read a National Institute of Health study linking fibroids and Endo together, through genetics. So perhaps this potentiality for Endo that manifested in my mom and I had been brewing in our genes for a few generations. This would also explain the rise in autoimmune diseases that are prevalent in people now). This was a mistake, but there were no endo specialists at the time and even now, I still see that many doctors keep insisting that hormonal therapy is the best treatment, or hysterectomy (even for other things such as the fibroids my Nana developed later in her life…she probably didn’t need a radical hysterectomy!) even though I disliked all the forms of the pill I was forced to be on for the 2 years or so I tried it to supposedly stop my own cysts while at UD, and I’ve seen that Lena Dunham as well as Daisy Ridley (Daisy also has PCOS) have stated that their cysts still grew, even while on hormonal birth control. I really disliked the side effects of hormonal birth control, it made me gain weight, it made me irritable, and it never helped my monthly excruciating menstrual pain. It also probably caused or contributed to me developing thyroid disease. I even had pains starting in 3rd and 4th grade and missed several days of school due to them, although I didn’t actually start menstruating until age 11 (ways too young!-and my poor mom, she got her period at age 10! Yikes!) My mom says her monthly menstrual pain was helped by this laparotomy, but that apparently, during corrective surgery in October 1985, the fertility specialist found scar tissue and adhesions that had developed, and her left ovary was behind the uterus! So he had to put it in the right place, perform a D&C, and a culdoscopy (also she went through at least two HSGs in the course of those years). My mom was on Clomid for 18 cycles, a couple of which were after this second surgery. She finally asked the doctor, who was part of a set of the father-son team in NYC that she and her friend from Chicago had flown to (unfortunately they both passed away a few years after we were born…the grandson went into physical therapy, I really really wish I could resurrect the Dr.s Decker!) http://www.nytimes.com/1993/01/28/obituaries/dr-w-h-decker-70-specialist-in-infertility.html She asked Dr. Decker if she could try something else, so he got her on the injectable Pergonal the second cycle on it she conceived (it’s been reformulated and rebranded, and is now a standard IVF drug and known as Gonal F) http://www.nytimes.com/1995/02/26/business/wall-street-a-fertility-drug-grows-scarce.html Also Pergonal used to be made out of nuns’ urine! It’s true! https://qz.com/710516/the-strange-story-of-a-fertility-drug-made-with-the-popes-blessing-and-gallons-of-nun-urine/ She said at that point she had gone to several catholic novenas dedicated to conception and fertility, begging God to let her have a child. She went in for a blood test on Good Friday in 1986, and finally found out she was pregnant. The Deckers ran the Fertility Research Foundation and were the inventors of artificial insemination (now called IUI) and sperm cryopreservation. They were pioneers and really advanced at the time. My mom thanks her good friend, Andrea, who at the time had just conceived her 3rd child and who encouraged my mom to have sex the night after Andrea, my mom, and their other friend Susie were all hanging out in the city admiring Susie’s twins, Aiden and Pia (Pia is now a mother herself actually). My mom said she was exhausted and mentioned her chart to Andrea, and Andrea was like omg JoAnne you have to consider getting another BD in tonight, even though my mom was like oh I doubt we will. My mom told me this past weekend that if she hadn’t listened to Andrea, I probably wouldn’t be here.
Anyway I spend my time reading lots of literature on it, I’ve read the book It Starts with Egg by Rebecca Fett, WomanCode by Alisa Vitti (she herself has PCOS and has numerous specific suggestions for managing PCOS on her website floliving.com and on her TedTalks), The Period Repair Manual by Lara Briden, and now even a book published in 1978 by the senior Dr. Decker this is out of print; in it, he recommends excision for the proper treatment of Endometriosis (which was really ahead of time!) https://www.amazon.com/Why-Cant-We-Have-Baby/dp/0446910074/ref=sr_1_1?ie=UTF8&qid=1484104176&sr=8-1&keywords=why+can%27t+we+have+a+baby+dr.+albert+decker I also have access to several medical journals through my job at Touro College, I looked at studies through their school of Osteopathic Medicine as well as research from the NY Medical College. In addition, I am constantly watching videos on YouTube regarding removal of endometriosis, and studying pictures of it, familiarizing myself with the pelvic anatomy, looking back at my own sonograms and ultrasounds that I have going back to 2008 (gynocologists are obsessed with performing and ultrasound when there’s no frigging fetus in there, it drives me crazy I’m like…ENOUGH with that already people!) I seem to have a penchant for developing all of these autoimmune conditions that require self management and education, since there isn’t much known about them and no true cure, and doctors don’t really care (hypothyroidism/Hashimoto’s disease, diagnosed 6 years ago; despite sending her the most recent literature my mom doesn’t understand it, she thinks I eat out of the cupboard and that that’s why I’ve gained weight, even though I remind her I lost 20 pounds for the wedding by following the AutoImmune Protocol AIP diet, I really wish my mom had this disease as she just doesn’t get it, and she can eat whatever she wants and never gains an ounce, nor is ever exhausted and tired all the time for no reason like I am; I also may be type II diabetic, I was told in November that my A1C is 6.5…this run in my family, my paternal grandmother, one of my great grandmothers, were type II, and my great grandfather was type I; I also may have IBS or IBD, possibly Crohn’s…my dad has informed me that several cousins of his have IBS and one of them has Crohn’s. I’m not sure if this is because my Endo has spread to the back of my bowel in the last year or so, but ever since last spring I have urgency and have several bowel movements a day, so I’m a bit nervous about that and student teaching, it’s uncomfortable and embarrassing and I’m terrified I’lll have an accident…I think that’s everything. Oh wait, I’m also homozygous for the c677t MTHFR gene mutation, which means I have to take a Prenatal without folic acid, but instead folate or methylfolate. I’m saddened that most practitioners don’t take MTHFR more seriously. I spend a lot of time on the Kindara app connecting with others through it who are struggling to conceive, have met many fellow endowarriors on there (and PCOS, and unexplained infertility too). I enjoy looking at charts and studying patterns and learning from them. I find it fascinating and nerd out to charting. I really wish they had taught charting in sex education.
My fear is that by waiting too long, I’ll end up in the ER again, and this time I won’t be able to keep them from removing important stuff (such as ovary, or performing a full hysterectomy, etc.) as I often read stories where docs do that to ‘treat’ Endo, even though, as I’ve read in the Facebook group Nancy’s Nook as well as on EndoMetropolis and in some subreddit groups, a hysterectomy is NOT and NEVER is the treatment for Endometriosis. I hope i’m not a ticking time bomb. That pain in the ER last year was the worst of my life, I swear I’m not being dramatic when I say this. Even morphine, toradol, and percocet all administered within a few days of each other still didn’t help dull the pain. I still always have the percocet in my purse with me at all times, even though I haven’t had to take it since August, as I’m scared of that pain again. We found out during our genetics consult on 12/23 that out of 104 mutations and diseases we were genetically analyzed for, I am a carrier of two minor ones that I’d never heard of (one for muscular dystrophy, and another for a rare form of kidney disease), and Chris is a carrier of an enzyme/tendency for overproduction of testosterone condition. But I was relieved to find out I’m not a carrier of cystic fibrosis, as my cousins are and they had to do IVF PGS for both of their kids to ensue they wouldn’t have that condition. I was also annoyed, however, that the genetics company as well as my fertility clinic didn’t take MTHFR too seriously, yet it’s accorded significant weight in the It Starts with the Egg book.
Almost all of the OBGYNs I’ve ever seen want me on hormonal birth control as they don’t want to directly deal with the Endo, and they don’t want to allow me as the patient to have and control my own fertility and decision to conceive. Also all the OBGYNs I’ve seen in the last 5 years or so kept saying I had plenty of time, and that I was too young to have a baby. Meanwhile, I see women in all other parts of the country (through charting with Kindara) having their 3rd or 4th by my age! Chris reminds me that they have a much lower cost of living and that it is normal to not wait to start a family like it is in the NYC area where we live. I rue the fact that I grew up in a metropolitan area and that I stayed here. I should have been in Kansas or Wyoming or something!!!
I recognize the last few posts here have been down. They haven’t been the most uplifting. Please bear with me, for my feeling guilty about the attitude conveyed here. At the moment I actually seem to have some semblance of energy (late afternoon/early evening) which is quite incredible! However, I think I only have it because I went for a session yesterday as well as a session this morning where I received Jin Shin Jyutsu https://www.jsjinc.net , fingertip pressure and precisely-placed tension at various pathways and meridians throughout the body. (On top of this, I found I was super exhausted after each session, and only felt somewhat better after I’d taken a two hour nap and drank some matcha tea this afternoon). But wow-I mean, a lot of Jin Shin Jyutsu resonates with me; the Prana (that I’ve learned about through my sporadic and intermittent practice of simple and relaxing yoga, I like Yoga with Adriene, I found her a little over two years ago and ever since, I have completed several of her series including the 30 Days of Yoga, Yoga Camp, and Power Yoga-now I’m starting with Revolution http://yogawithadriene.com ) and the chakras (I read a book on Chakras that I picked up around Union Square a while back) is familiar, and it is also similar to acupuncture (which I had done through some sessions this past fall, to relieve my back pain as well as help with indigestion and my infertility due to endometriosis) in regards to the meridians and energy points. Apparently, I am very sensitive to environmental toxins and foods, and I need to have time for myself and extra attention paid towards healing. (I’ve suspected this in the last few years, but lately, I feel like I’m an eighty-year-old woman in a thirty-year-old’s body; heck, on the outside, I look super duper young, my baby face leads people to think that I’m in high school or college, so it’s great, but I wish they could see how sick I feel on the inside, so that people wouldn’t think I’m making things up). I’ve been told I need to occasionally decline to do things for people, or at least, leave it as, “I’ll get back to you on that,” and that that’s okay.
So I know I’m rambling around back to the chronic fatigue topic I originally meant to start this off with, but yea, I’m EXHAUSTED 24/7, ALL OF THE TIME (except right now, for the last hour or two, and I don’t know how long my energy will hold out-if you’ve ever paid attention to the spoon theory, https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ , you’ll see what I mean here. It’s a constant battle to manage my remaining and at will energy). I feel like I could take a nap if given the opportunity to at any point in the day. It could also be that, I’m on day 3 of the Institute for Functional Medicine’s 21 Day Elimination Diet, which excludes coffee/caffeine. https://www.functionalmedicine.org/page.aspx?uid=37&id=948 I did this from 12/1/16-12/23/16, and could have kept going to reintroduce the potential trigger foods and sensitivities, but then the holidays and being sick with back to back colds and a yeast infection through mid-January kind of derailed me (in retrospect, I wonder if I may have been suffering from what’s known as a thyroid flare or endo flare, or just a general, greater, overall autoimmune flare from the stress of the holidays). Dr. B., from my first post, wanted me to do this, as well as Alexa. I also read about it in Rebecca Fett’s It Starts with the Egg, and the difference between how many eggs and the quality of the eggs were retrieved for an IVF cycle when one was gluten/dairy/caffeine/alcohol/sugar free for just a few months, versus when not following the protocol. It applies to those attempting to conceive naturally as well.
I just wish that I could feel like I always used to, which I really can’t recall ever feeling 100% since perhaps, 2009 or 2010, in regards to tiredness and excessive fatigue. I mean, I started the coffee habit in 2003, when I was trying to keep up with the others in my high school to attain high grades and so I was sluggish most mornings, despite being a relatively physically active figure skater at the time (and pretty fit and active in general, I also did extensive off-ice training including ballet, which is great to keep oneself in shape). My freshmen year of college I had two friends who once switched out my coffee with decaf, since they noticed that I was brewing it all the time. Sophomore year was when Chris and I were getting to know each other and fall in love, ten years ago now (yikes haha-it feels like just yesterday though!) I recall bringing that same mini coffee maker to the dormitory lounge and brewing it while typing a paper for our history class, and Chris and I spending the night joking around and flirting, until we finally poured out our hearts’ deepest desires and expressed our mutual love for one another (a short nap, handing in of the papers, a few hours later the next day, and we were officially in a relationship together-took us over a year sheesh!) And then by my senior year, even my residents would know when I was up writing a paper (regardless of whether I was on duty that night or not), since they could always smell the coffee (I typically tried to keep my dorm room door open, in case anyone needed anything or wanted to stop by; even if I wasn’t on duty).
So maybe I need to accept and reevaluate the fact that I’ll always be exhausted all the time. Some days I follow the approach of ‘fake it till you make it’ and just try to pretend to be energetic. I don’t think it really works, but I do my best, especially if it’s during a family gathering or when I’m working with a student. I also try not to complain about it to anyone except my husband and my parents (I feel so bad that they take the brunt of my “I’m soooooo tired” whinings) so as to try to fool myself (and everyone else). When others ask me how I’m feeling, I nicely say that I’m great. I don’t want to dump on them and tell them that I can’t believe I have perhaps approximately another seventy or so years of living like this. And I also recognize that there are people who are suffering with far worse, lupus, MS, Lou Gehrig’s, Parkinson’s, cancer, etc., who feel quite rotten and manage to maintain a positive air.
But some moments, I just wish I could have my life back again-feeling awake and alive.
Wake me up when they find a cure to all of these autoimmune diseases … Zzz Zzz …
A couple weeks ago, Chris was at his parents’ house, assisting with holiday cleanup and preparing for some of our new apartment-related details (physically helping his father build the new apartment, and making several trips to Home Depot and Tile stores, selecting bathroom tile and fixtures, the like). I had gone home to my parents’ house, to try to clean up my old bedroom (which has, honestly, been a complete disaster since our wedding nearly three years ago). However, I had one of the most painful periods since the ER last June, and one of the worst crying episodes that I’ve had since Dr. B. first told me the really sad news in October. I had felt the need to cry well up inside me most of the weekend, but then when I arrived back in our place in Queens that Sunday night I couldn’t keep it in any longer. I broke down bawling on our futon and cried for probably 3-4 hours straight. It didn’t seem to matter what television show or movie I put on to try to distract myself. I just couldn’t stop. I had kept crying while setting out my things for the next day and taking a shower and getting ready bed. I’d been in bed, occasionally able to get my crying under control for about 5 minutes or so, until it would come right back up again and I’d start all over. Chris called me around 1:30am and I picked up (even though I was also ashamed of myself, and I was conscious of the fact that our neighbors could likely hear me and have never said anything, even though they must think I’m terribly depressed and/or insane, perhaps both). Chris was there to listen to me, despite me having 50 tissues all around me. I told him that I’m tired of people telling me that I’m too young to be a mother, that maybe this nature’s way of saying I wouldn’t be a good parent, that I’m just simply not meant to be able to reproduce. I feel like I’ve failed everyone close to me. I especially feel like I’m letting down my grandparents, and considering today is a dozen years to the day since my paternal grandfather passed away, I feel so inept and worthless, I wish I could burrow into his shoulder and apologize for just not being able to do what most humans can easily do. Chris didn’t interrupt me or accuse me. The following day was rough as I had to be up early but my eyes were huge and puffy (ever since I was about 25 or so, I’ve realized I can’t cry, or I’ll look bizarre upon waking up the next morning for the next couple of days). Some ice did quell the swelling, but I could see right through my self-imposed image. I then had two more crying episodes this past week, around the time I was ovulating, which doesn’t make any sense, but it as of the last cycle or so it doesn’t matter what time of the month it is for me, I find myself welling up with tears so easily and get emotional pretty much all the time. Why am I so fragile, such a whiny and lame excuse for a grown woman? (More ice was needed). Why can I cry so much and still not be emotionless after? Why can’t I find the way to help myself, and help others who want defeat the their immune systems’ gradual yet imminent destruction? I can’t help wondering if it’s because we aren’t educated enough, or are working in the right fields, or have enough money, or, or, or…and then I get so angry with myself for even desiring to replicate my genes, my CRUDDY genes, with someone else’s, and perpetuate and afflict another human being with my autoimmunity. I wonder if this was always the case, from my conception on, that I was never built to be able to have a child and that my body would start failing me in early adulthood. I’m guilty of wanting to have a baby when I can barely physically take care of myself, cook/cleanup for dinner, do laundry, go grocery shopping…ever since being diagnosed with hypothyroidism and Hashimoto’s 6 years ago, I allow even the simplest tasks to stress me out, and I hold myself to an unreachable, unrealistic goal for any and all activities or projects I undertake. I fully immerse myself with everything I’m currently involved in (student teaching, education grad school coursework for my second Master’s degree, apartment design, seeing my friends and family, attempting to fit in yoga and meditation) but it doesn’t seem to keep my mind off the pitiful reality that I have failed at the thing that everyone has been built to do. I’m curious if it’s because, from what I’ve read in the books over the years on autoimmune conditions (which takes me forever, and hence why I hardly ever read anything for pleasure anymore, because I’m almost always reading up on my medical issues and the latest, newest breakthrough thinking on this mysterious autoimmune afflictions) I’m akin to a lot of the people who suffer from these autoimmune diseases: we tend to be type A, and micromanage and obsess over every little thing.
Ever since I was in preschool or around the time I could remember, I have wanted to give birth to a happy, healthy baby with the person of my dreams. I met the love of my life around this time 11 years ago, began dating the following year, and now we’re simply to old and too far gone to start our family. We waited too long.
How do I find the way to adjust my priorities and come to peace, to stop mourning the loss of my fertility??
Ever since that appointment in October where I was devastated, it’s been tough to remain steadfast and positive. My employer allows me access to research conducted through the NY Medical College as well as Touro College’s School of Osteopathic Medicine, so I find myself spending an inordinate amount of time scouring the collections at these medical institutions. Moreover, the last few weeks I’ve poured myself into as many medical journals and research studies as possible, and a few key ones that I first discovered back in the days following that devastating consultation in October have stuck out to me. One is by the Cleveland Clinic, and it discusses my (and my own mother’s) particular battle with infertility: endometrioma aka “chocolate” cysts on the ovary and the best course of action, when it comes to a fertility preservation perspective. https://www.clevelandclinic.org/ReproductiveResearchCenter/info/2012/Carnahan-M_Fedor-J-2012.pdf
This study compares the surgical treatment approach vs. the ‘wait-and-see-what happens’ approach. It discusses the pros and cons of both. There are several theories offered as to what actually causes Endometriosis itself to occur (why the menstrual blood isn’t fully leaving the through the woman’s vaginal tract with each cycle, but instead how it gets to move to and grow in other parts of the woman’s pelvic region and reproductive organs). What I found very riveting, is that in the overview, the article states that Endometriosis is a reproductive disease that affects 10-15% of all women, and that of these women with Endometriosis, endometrioma manifest in 17-44% of them as a subtype of the greater disease of Endometriosis. I guess I’m just lucky, huh?
Another article that is significant is from the National Institute of Health, called Endometriosis and Infertility: A Review of the Pathogenesis and Treatment of Endometriosis-Associated Infertility. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538128/
In this article, one hears about fertility treatments and efficacy rates (also included in the other article) but it goes more into the actual genes that are linked to Endometriosis and some studies done on mice and rats regarding potential gene therapy and treatments for the future (especially how we may eventually get to the point as a society where hormonal birth control won’t be pushed onto women just because their OBGYN isn’t trained in and doesn’t want to deal with their reproductive disease, whether it’s Endometriosis, PCOS, or some other unexplained infertility that causes torturous side effects every month for the afflicted woman). This study is really promising to me and certainly gives me a lot of hope.
I’ve also found a supportive community on reddit, and have joined the subreddit ‘still trying’ (for those who aren’t able to conceive within the first 6 cycles…which, yes, official infertility has been stated to be after at least one year of trying, but I don’t buy that. I think I saw somewhere that it’s been revised for women 30 and older to be 6 months, and under 30 for one year, but even so, I feel like a healthy couple doesn’t take that long). There seem to be those who conceive on the first try (or even with just one night of unprotected intercourse), then there are those that try for a little while and it takes some education and effort (say, about 4-5 cycles), and then there are the rest of us, who are clearly not fertile myrtles. It’s one of the most basic things that a woman can set out to do, essentially: reproduce. And I recognize that it’s a selfish desire. But it sure knocks the wind of you when you realize that you can’t do what your ancestors have done for millennia.
I am still aiming to have that laparoscopic excision surgery done, as from all of my researching (and I spend way too much time on the topic, I am in several Facebook groups and always scrolling through threads privately messaging many women with questions, I also ask our family and family-friends for help and advice and take notes on their responses, and I constantly watch videos on YouTube about surgery and compare ultrasound pictures of endometrioma and what they look like, in respect to the ones I have for my ultrasounds going back to 2008 or so now) and it seems that this is the way to go. Not only from a pain management perspective, but also from a demonstrated improvement in fertility too. So expect further updates where I’ll go into this more in-depth and my reasons for why I think it’s the best course (and note that I say “…why I think it’s the best course” for a reason–you have to be your own best advocate in this day and age, especially when one has multiple autoimmune disorders!)
So much has happened since I last wrote my first post in here. I’ve basically been catapulted into a full-on fertility journey. Even though the prognosis for bearing natural-born children wasn’t good as of October, by the end of November, some of the remarks from Dr. B. had been retracted and modified. He still seems to think the outlook isn’t too good, but he is passionate about the The Institute for Functional Medicine’s 21 Day Elimination Diet (2015). Based on what I finished reading in It Starts with the Egg by Rebecca Fett (2014), I would tend to agree. Thus I took advantage of the break between Thanksgiving and Christmas and dove into the diet on December 1st (just completed it as of yesterday-I’m giving myself off during the week between Christmas and New Year’s, but then I’ll go back on again starting January 3rd and do the 21 days of elimination again, but then afterward try to gradually reintroduce foods and record any potential sensitivities or symptoms). I have lost about 8 lbs. since being on the diet, and also found out from my general practitioner within a few days of starting the diet that I’m borderline type II diabetic, which runs in my family (my A1C as of November 9th was 6.5). So this couldn’t have been a more relevant wake up call. As for the rest of the fertility workup, my Anti Mullerian Horone (AMH-a measure of a woman’s remaining ovarian reserve) was 3.23 as of October 12th. But then, when it was checked again on November 23rd it had gone up to 5.45!!! My FSH is pretty decent, at 7.4 on October 12th. My estrogen/estradiol that same day was measured (also part of what fertility specialists refer to as “cycle day 3 bloodwork” and came out to 68, which is perfect, they like it to be under 80. I had an HSG on October 24th, while Chris had his semen analysis that day as well as his infectious disease bloodwork and genetic testing bloodwork. The HSG showed that my uterus and left tube are fine, but that, as was suggested back in June, my right tube is on the way to becoming a hydrosalpinx, it’s somewhat dilated, although the dye still spilled out of the tube (it seems likely to me that the fimbria would be damaged, since that ovary has the much larger and more painful endometrioma on it). On November 23rd I came back for my own infectious disease bloodwork and genetic testing bloodwork. We are both normal for any infectious diseases (don’t have any), and Chris’ semen analysis was decent, although his morphology (shape and size) came back abnormal at 2%. We had our genetic consultation phone conference yesterday and found out that I am a carrier for two minor diseases: alpha-sarcoglycanopathy (has to do with a rare form of muscular dystrophy), and steroid-resistant nephrotic syndrome (has to do with kidney functioning). Chris is a carrier for 21-Hydroxylase-Deficient Congenital Adrenal Hyperplasia (an enzyme problem that relates to one’s adrenal glands, leads to excess production of testosterone and androgens). We both are NOT carriers of Tay Sachs, Cystic Fibrosis, Fragile X, or any of the bad ones. 104 conditions were tested. Even though we are both carriers of a couple things, we would both need to be carriers for our potential offspring to be affected. Additionally, no cancers run in our families (at least, that we know of). This is all really good news! On top of all of this, I think that, based on reintroduction of the daily probiotic coupled with the elimination diet, my “IBS” type symptoms have gotten extremely better, although I still wind up in the bathroom for a while at several times. (IBS runs on my dad’s side). So, just in time for the holidays, we have a lot to be thankful for.
The fluffy clouds streaked across the sky in unending lithe waves. There was a pink twinge streaked to the western horizon. It had been a peaceful, gorgeous day.
It had been five and a half years since I had seen him; I initially had been to one of the other main offices for a basic workup, and everything had checked out alright. Sure, I knew I had ovarian endometrioma cysts, a subset of the disease known as Endometriosis, but, the ultrasounds between 2008 and on had shown them to be relatively small, even in 2011, so we decided to employ a combination of watchful waiting and expectant management. Besides, plenty of women have cysts on their ovaries, and things turn out alright. This is what I have been told by a wide array of medical professional professionals over the course of my entire life, or at least since I first started menstruating when I was just 11.
Now, at almost 30, and with a recent emergency room visit for said cysts, I knew that the circumstances had changed, albeit not drastically. I was informed in June 2016 that the cyst on my right ovary was now 9.5 cm, the one on my left ovary was almost 9cm, and that I had a new one on the back of my uterus, about 8cm. They didn’t end up operating, which I was thankful for, and then my husband, Chris, and I immediately jumped into trying to conceive our first child. I read up on tracking one’s menstrual cycles and basal body temperatures through the book “Taking Charge of Your Fertility” by Toni Weschler, which I happened to have with me when I had ended up in the ER, and joined some groups online. I began reading assorted medical studies and tips about laparoscopic surgery to treat my specific kind of cysts.
My visit to the clinic today entailed a lengthy conversation with the nurse practitioner (Harvard educated), named Alexa* (names have been changed for privacy reasons) and I described how shortly after my last visit over five years prior I had been diagnosed with hypothyroidism and Hashimoto’s disease, all the steps I have taken to manage my thyroid condition, and then all the recent newer developments since the ER visit (extreme back pain, excruciating cramps at any time during my cycle, and suspected IBS/IBD issues). She took notes and posited questions as necessary. I was impressed that Alexa even asked if I had tried going gluten-free and dairy-free, epsom salt baths and apple cider vinegar, and whether I considered yoga and meditation and other lifestyle changes. I was thrilled to tell her all about my experience seeing naturopathic physicians and how much more energy and decreased brain fog I gained after seeing them, despite their unconventional ways. On top of this, she seemed to approve of all of my recent decisions (changing my career to a less stressful one, our impending move to leave NYC and remove some of the fast-paced stress from my life) and then stated that Chris and I would probably easily be able to have two children, and we could still wait a few more years if we wanted to, things are flexible.
We were down the hall and Alexa was administering a transvaginal ultrasound, to see my cysts and also to view the Antral Follicle Count (AFC), which would provide an idea of my latent egg supply of ‘sleeping’ follicles, set to mature in the next 90 days or so, the amount of time it takes a potential egg to achieve dominance and become an ovum at ovulation. Doctor B. came in and asked how I was doing: details from our wedding, what the first few years of marriage have been like, my endeavors during my most recent Master’s program, how I like living in the city, etc. Things flowed seamlessly-even though, in retrospect I realize it was small talk, Dr. B. has a way of not making a patient feel uncomfortable or awkward, as his rapport is so natural.
After I had proclaimed Chris and myself to be ‘transit nerds’ and while I enumerated my reasons why the Long Island Rail Road (LIRR) trumps any other commuter rail system in our metropolitan area, I heard a sharp intake of breath. Dr. B. asked me to pause a moment and he told Alexa to zoom in on something on the screen. Then he turned the screen towards me and stated that I had no ovary left, he said that my cysts had been gradually destroying any normal ovarian tissue there might have been, and then he showed me the teeny, tiny sliver of what looked like a watermelon slice to me on the screen, saying that it was what remains of my ovary.
It seemed like moments passed, while he calmly walked over, clasped his hands over my mine, knelt down and looked me in the eye, saying, “I’m so sorry Joanna, but you will never have natural-born children. Perhaps you may be able to conceive with donor eggs through IVF, but you know, you’ll be going into early menopause, very very soon. I’m sorry, endometriosis is a terrible disease, it really is.”
My mouth opened. Then it closed. Then it opened again. My limbs turned to jello as my eyes well up with tears that I tried desperately to keep from pouring down my cheeks and filling the entire ultrasound room.
He kept shaking his head and muttering to himself over and over again, “You’re autoimmune, you’re autoimmune…”