I thought I'd write this as my experiences with endometriosis have led to many unexpected life changes, several traumatic experiences and a depressed view of some of my own dreams and aspirations, which have in turn impacted nearly all aspects of this blog. Also, I decided to write this out of a massive bout of frustration as I experience for the far-too-manyth time a miscarriage. And this is unlikely to be unique to me. Endometriosis is a widely experience condition that women suffer with, it is chronic and there is no cure. The best anyone can do is manage it a little.
This is what I wanted to write up: some of what I experience pre-diagnosis and what I've done and will do to manage it, as planned anyway.
When I was young I was a strap of a kid. I ran about like crazy and then got into reading but neither cancelled out the other. I was thin as a stick, pain free and completely sure I was the same as everyone else. This surety persisted longer than it should have though and became a problem that stood in my way in years to come. Then puberty struck and I, like the vast majority of other girls, did a bit of growing and developing. But something went wrong. Not long after my mother shook my hand for becoming a woman - rather an awkward moment but I understood it to be a milestone - I wasn't just getting tired and falling asleep when I was having my period. Nope, I was throwing up for a full day straight and on into the night, meaning I had at least one day off from school a month. If unlucky, I was belting out of classrooms for the toilet, lying in the sickbay with my eyes rolling about my skull for the pain, throwing up outside windows and over railings because they were closer than the toilets, having to take airsick pills so I could fly just because I happened to be flying during that time and so on and so forth. It was a monthly obstacle course. I was also in extreme pain, which had me curled up in a ball - this pre such drugs as Naprogesic (my saviour! as if I took it in time I wouldn't throw up even though I might still feel some pain. If I didn't then I just threw up the pills... and there went that.) Conventional pain pills did nothing. In fact, the aforementioned airsick pills were the only things that worked and I was forever after dying to ask my father for more (he had them at the time). I'd be sweating and shaking with pain and I'd escape into sleep whenever the pain didn't have me dashing to the toilets once again. Relief typically came sometime between 12:00 and 2:00 in the am, at which time I'd slowly start eating my first meal for the entire day and night: a giant granny smith apple (heaven) or if I didn't have an apple then a small tub of apricot yoghurt. Repeat from age 12/13 through to the Naprogesic era, which provided some relief but no control.
And so my life continued. And although my diet was good (far better than most my age as I didn't eat McDonalds or eat chips, lollies and fizzy drinks at home) and my activities remained high I became increasingly unable to control my weight. What had never been an issue suddenly flared into something I had to consider and something I would receive criticism on, as though I wasn't taking any care of myself. I became frustrated and angry with myself and with the fact that it would take months of 2 hour walks up and down hills a day to gain any control, only to have it slip away again when my routine was changed for schooling. I typically hate team sports but I did do enough running about to match it. I was even known to get annoyed at midnight and jump out my window to run about the block a bit. Nothing was permanent even though I never picked up the fried chips or bars of chocolate that would normally have someone packing on the weight again so quickly. After a while I began to notice that it was a one step forward two steps back situation on the scales. Come that time of the month I'd gain twice what was said to normally be put on by women and at the end I'd only lose some of it naturally. Water retention wasn't all that was going on, although it did account for a fair bit. To this day I still struggle far more than those around me without endometriosis. Exercise and a strict diet has to be constant for maintenance of any weight and as soon as illness or circumstances make me deviate from this I'm doomed to an age of battling my body.
There was one visit to a doctor when I came of the other that age where I was prescribed the pill. I took it and all but my reaction to it was extreme. My blood pressure skyrocketed and my weight too. The doctor immediately pulled me off it and I refused from there on in to take any form of the pill or even those little implants that are about today. They aren't, as I said to another doctor years later to his disgust, "natural enough". He thought I had issues with modern medicine or some such while I meant that chemicals had sent me so over the edge of healthy I wasn't going there again. Now, looking back, I know that for me it was the right choice as my hormones were not behaving well enough to match what the pill is supposed to do, meaning its effects of me were radically different than expected. For others with endometriosis though, the pill or other such medicines help control the symptoms but unfortunately you can't try for a family while on them and when off the symptoms go haywire again.
While this continued on I had no idea I had endometriosis. None whatsoever. I'd never heard of it and no-one around me who was even vaguely familiar with my experiences told me there was such a thing. I lost a good half my life to struggling blindly with this condition and trying to manage it while thinking and hearing such things as "it is all my fault" and "why is everyone else so different then?". This is where my perspective that I was normal was a hindrance. I should have figured it out. I was smart enough that I could have figured it out. If I'd thought to think it odd between bouts of throwing up and exercise... Instead, I became aware that my pain tolerance was skyrocketing. I'd be hit in the head by a two-by-four and not bat an eye. I had a tooth decay to the root and I couldn't feel a thing (that's famous with the dentists now...). The only pain that broke through as real pain and not a tingle, itch or flutter was the successive pains of four back injuries, one of which was like a pair of scissors permanently planted between the shoulder blades, and my periods if I missed out on the pills. Pain faded away and yet it was a constant. Sticking a nail through my foot is nothing, just an odd pressure sensation, while carrying bags sets my back on fire. What on earth has happened to my brain's comprehension of pain signals? Numbness to overwhelming sensation, the switch made simply through activity or the body's normal (or not-so-normal) functions.
Then I got married and despite the hubby's somewhat scared heart I ended up falling pregnant a few years later. I was happy and like most women I began to fall in love immediately. Women don't wait for the idea to become reality, the baby presented post birth, to fall in love with their child. Nope, they do so as soon as the knowledge of pregnancy is fully comprehended. Within a week they're thinking names, due dates, rooms, life plans and so on. They're minds explode and the poor hubbies spend their time running to catch up or control it all, gradually falling in love as the bump presents or suddenly so when the baby is presented. Mostly anyway. Cases of different reactions happen with both parties, depending on circumstances and personalities. So, like the vast majority of pregnant women, I got attached. Too attached as it ended up being. I didn't know then to be as cautious with my heart as I do know, and that's from a fairly cynical and withheld person. Come three months to the day I lost the child. And about 2 days before I'd commented that I was still worried I might lose it on the last day of the first trimester - the time when women generally miscarry, although later miscarriages do happen and some can proceed on to stillbirths. It turned out it had died younger than the 3 months so things, while terrible, were manageable. There was an exorcist scene in the hospital but I talked to the hubby, refused the councillor gritted my teeth through the pain I felt, puked once, insisted the hubby wash his hands, apologised for messing the floor, got wheeled about in a plastic chair, was questioned over my tattoos as a way of connecting, apologised again to the late D&C doctor - by that time mostly unnecessary, refused to look at the bub as I would have broken and regretted it but am thankful I didn't ever since.
I honestly can't really remember which of the series of doctors told me to go for a scan and when it was spotted anymore. It was probably one of the ladies doing the scans when I first started to miscarry. Anyway, I was told I had a growth in my left ovary. By this time it wasn't the first in the family (I'll keep the rest private here) so I wasn't terrible surprised and knew the drill. I got my blood tests - nothing alarming - and reference to a specialist and on I went to have surgery. I had to explain to the surgeon the history but there was nothing really for me to say other than that I'd miscarried and now apparently had a growth. I knew about cancer scares, knew to wait for results and knew not to panic. Some things can't be helped until they are and freaking out before necessary wasn't going to do me any good or solve anything. So under the knife I went, still pudgy from pregnancy hormones as I'd been unable to lose most of the weight by then, while telling the doctor that "she'll be right" even as he tried to comfort me. Afterwards, I wondered at the appropriateness of "she'll" but oh well, he understood.
The surgery went longer than expected and I was shocked to find out I dreamt while under, although I don't remember what of anymore. Too drugged up. When the surgeon came around the next morning he briefly mentioned a word. Endometriosis. My drug-addled mind remembered "endo" and it has remained as such for the most part. I didn't know what he was talking about. I tried to remember all the word to look it up but failed. At the follow up appointment though, he explained and I was shocked. Not only was there this concept to grasp: I had a chronic condition, but there was the horrifying knowledge that my case was not only one of the worse he'd ever seen - black spots all through my abdominal cavity - but was bad enough to have a surgeon screw up his face in disgust (he didn't mean to but I saw). He didn't explain much with regards to symptoms and impact but didn't mention fertility problems, part of my left ovary being removed along with a benign dermoid cyst and a long few hours of trying to clean me out after. ... He gave me a $1000 discount on the surgery for not knowing about it. That was really nice of him. As to the rest: shell-shocked. One of my dreams was of a family. Not overly large, but a family, and he'd just put it on the line - or rather, my stupid body had and he'd just acted as the messenger. I didn't shoot him but if I could have divorced myself from my own body and still lived I'd have done it multiple times from that meeting to now. Ignorance wasn't bliss but knowledge was a more painful state.
Along with a little more research I understood that my hormones were severely out of whack, my immune system too good (explained why everyone else get colds but I rarely do, let alone anything else bacterial or viral) and there was scar tissue to combat. These were the most salient facts in the battle to come, listed in a pile of other symptoms that never read pleasantly but explained a lot. I also found out that red meat, eggs and milk were probably not as good for me as thought due to the hormones contained, despite the iron content being essential. I changed my diet and compensated for vitamins lost and saw some control as a result though only a bit.
My family dream was looking a little distant. It still does and I'm getting older. Still young by normal standards but at 35 the chances of birth defects goes up in normal women and this is compounded when you have endometriosis, which itself creates a high-risk situation re birth defects. With heart torn up and dreams causing pain more than hope I struggled to manage my weight, my diet and to understand. I'd just had the surgery that was the only solution conventional medicine offered and I'd failed to become pregnant afterwards, my endo symptoms slowly returning instead. I thought an increase in scar tissue might have compounded the issue but that was just me thinking. Who knows what was wrong but I'm guessing the list was long, knowing what I know now.
Then my aunt and another friend came to me separately about their own issues to do with female bodies not doing what their owners wanted. They'd both separately seen a naturopath and found the management solutions they'd needed and gotten what they'd wanted. They said I should give it a go. Well, I'm not one for believing shark cartilage or the like will do the trick but I do very well know that conventional medicines often come from plants so knocking the whole idea didn't seem sensible to me. I'd give it a whirl, I thought, and see how it goes.
The first tasks was a food diary and taking my temperature at the same time every morning. Just to get an idea of things. The food diary turned out to only need a few more seedy/nutty things, some more green tea and so on to be perfectly healthy by their terms (this is pre knowledge of allergies...). And my temperature when wildly up and down per day, meaning my hormones were as out of whack as suspected, maybe more so. Up and down per day isn't normal, if you aren't sure. It is supposed to be a smooth wave-like form per month. Also, visually, my skin was a mess when it had once been smooth but that could be explained as endo related. And I was still overweight but my diet and exercise didn't indicate it was due to this.
The lady naturopath did some tinkering and changed my diet a little. She made a magic potion or two (a bottle of herbal/barky type ingredients) for liver cleansing, then hormonal balance, then non-pregnant stages and pregnant stages. She also put me through a detox and had me start up a regimen of pills. It all seemed like what my medico relatives call "expensive piss" but results did present themselves. My hormones slowly evened out and the normal wave-like form in temperature readings appeared and stabilised. It seemed I'd going some measure of control there even though the endometriosis wasn't cured. My attempts at weight loss began to work a bit more and my skin cleared a little though not completely. Pain went away, massive weight gain at the beginning of a cycle stopped, puffy feet disappeared, nausea all but fled and I became a bit more hopeful about a family.
So, I'll break to tell you the vitamins I take daily because these will help you if you're in a similar situation. I take: folinic acid (precursor to folic acid), Q100 aka Q10 (to help my heart and a bubs - not always necessary but good for me), magnesium for cramps, fish oil for cramps, zinc, vitamin e (my own input), a multivitamin, an iron pill (I don't eat red meat while I lose more iron than the average woman), calcium (when I don't eat any through food in a day).
Time went past and I seemed more in control. I looked better and felt better but still the pregnancies came and went without children appearing. I learned to withhold my heart and to not take a doctor's discounting of early miscarriages as likely all in my imagination to heart. But for all I'd done there were and still are a few things that need addressing or overcoming. For one, I had a 2 week miscarriage before this one and lost a lot of iron. Despite the intake I'd had it wasn't enough to stop my iron levels from plummeting due to all the excess blood loss. So I was upgraded to the giant iron pills. Low iron levels knock you for six. It is incredibly bad but it starts out as something very much like hypothyroidism, of which I'm at threat of as there's Hashimoto's in the family (another autoimmune disease). The diagnosis swayed from thyroid issues to cancer in the thyroid to finally figuring out that the iron levels were way off, by which point so much time had passed I'd gone on to lose more. My warning to you here is that if you have endometriosis and aren't trying you're at risk and if you have endometriosis and are trying, make sure you speak to someone about it as a base plan of attack. Like you made sure to eat enough calcium when growing, it is essential. Even more so than for the average woman.
Now, as I lose yet another "chance" as I call them, I'm set on seeing a specialist over my immune system, having fixed my diet, managed to stablise my hormones, consistently avoid allergens and levelled out my iron again.
Oh, a note on my allergies and their connection to endometriosis: I'd suspected my immune system was a problem for a while and to help not bring about immune reactions quite so much I'd gone so far as to have an allergies test. It turned out I had enough allergies to make writing my own recipe book necessary as most pre-bought or cooked goods were no good. Simply eating away from home is beyond difficult unless I want hot chips, and that doesn't help the diet I'm on to control my weight (nothing extreme or unhealthy - I just can't hit the sugary and fatty stuff too much). It turned out I am allergic to wheat, oats, rye, soy, rice, almonds, peanuts, eggs and dairy. Add this to my choice to cut out red meat and there wasn't much food left for me, at least, factory produced food. Gluten wasn't a problem but that didn't help me. Nor do gluten free products because the vast majority turn to soy and almonds and don't remove dairy or eggs. Anyway, I came off these foods and replaced them as best I could. I felt a lot better again for it, despite the troubles I had finding food. My body became far more stable but still the pregnancy problems continue, meaning my immune system was and still is hyperactive if not reacting to my own cells (highly likely considering there are autoimmune aspects to endometriosis and my case was of a high level). As it stands, I'll have to turn back to conventional medicine. Then, if that doesn't work, back to the naturopath I go to see what she has to offer.
But pregnancies aside, you can see why experimenting a.k.a. cooking became a big thing in my life. What you see on the blog is my own personal cook book, made from trying out new ingredients and frequently burning mixes onto the bottom of my oven. I scrawl up what does work and taste good and then post it for everyone, purely because I realised just how irritating and frustrating dietary restrictions can be and that there's little help but what is mass-marketed and in fad (gluten free, and before that fat free). I almost insist that there's a new meal or variation made per day just to add to the collection. And I am proud to say that since I started, there's only really been one bland recipe posted but that was for the true health nuts and does include a note to include some bad ingredients if you like. Some of the breads vary in heaviness or lightness but otherwise, I'm getting there.
Now's the bit for my current rambling thoughts (expect tangents and no sense as it is midnight and I'm exhausted and a bit down):
So, with hormones fixed and pregnancies happening even though they fail there is a bit of hope for me still when it comes to having a family. Many of you may be wondering about adopting and why I don't try. I would but it takes two to adopt in this house and one party is more keen than the other. This means it isn't ideal, at least not as it stands. And I'm not one for fighting someone to misery to obtain a dream only to see it fail for losing the person I'm supposed to have that dream with. Does not compute. I spend my time mostly jealous of others, particularly my brother (he's lucky but loaded with responsibility - happy for it) and strangely my grandmother (RIP). I also spend my time beating my head against a mental wall of unrealised dreams, trying to convince myself that my life is worthwhile even though it seems at a standstill. Standstills frustrate me even though I'm always listening to birds and smelling the roses (there's lovely yellow ones just over on the bench). I am one of those people who sees a problem and ploughs on in to fix it and get on with the next issue, no holding back and no balking. But in this case all my efforts are taking too long and the dream is still distant even though the battle of my immune system is reaching new heights. Nothing to be done about scarring really so the immune system is my last fight between hope and war. IVF is off the books for the moment as it is expensive and if my immune system is the problem then IVF isn't as likely to work as you'd expect. Pathogens are pathogens even if there is only one bub or many at once. At least that's how the immune system sees it. Probably the difference between a cold and the flu.
Because all this turned my life upside down I followed another dream of mine (only to end up banging my head against the publisher wall) and began writing. If one dream fails or looks like an endless battle follow another to gain back your hope, meaning and will to fight. At least that was the plan. It still is, too. Writing calms me down, lets me think, provides a way to work through issues (see above) and above all it entertains my mind. Considering my mind likes to be either scattered to the winds or tearing into some new puzzle writing is perfect for me. I'm quite capable at a few forms of art etc. but writing turned out to be it in terms of the best method of transferring those odd thoughts to an entertaining form. It also helped reduce my stress, which in turn helped reduce the physical complications I felt. And, as you might have guessed from the above, no matter how small the win it is a big step forward. The office work is out for me. As is a PHD year, even though I am elegible to enroll (maybe one day... but I doubt it). Give me some gardening or farming, some labour, some writing, people and creatures to care for and my dreams. I'll keep fighting and maybe, just maybe, I'll end up with something to be proud of at the end of it. Whether in children, writing, being a crazy cat lady, a shotgun grandma or whatever else I make of myself. At least I've made a place for myself in this world, which was my first dream, and I have a hubby and many creature companions to share it with (two of whom are sleeping on me as I type). Maybe growing old as I am is fine. It is a better life than many get to live.
Still, I'll keep fighting for dreams as without them I think I'd crumble apart. I just might have to change what I'm dreaming of, that's all. Never mind, the contingency plans are already in the works.
I hope this helps someone out there. Even better, I hope it makes someone aware that the young girl or woman in severe pain might have an issue they aren't aware of that needs addressing before too late.
And I hope my recipes help too when it comes to allergy or endometriosis management. There's more to come, especially with seafood. There's some sugary recipes included when a low sugar diet is desired for those with endometriosis but widening the choices so you can make sugary foods when you want them means you won't binge when you finally find something you can have. So enjoy. Sensibly. Or not. That's up to you. Personally, I got annoyed by not being able to eat anything from a bakery or anything from the lolly or ice cream sections. Mostly because the hubby would eat yummy things in front of me that I couldn't have, like hot cinnamon donuts - now that's a recipe for murder. Ditto for Asian food or all sorts.
Also, if you are perchance wondering if I've written every medical problem I've encountered down. Nope. Not even close. Maybe you are wondering just how embarrassed I must be at writing this. I kind of am. To be honest, I know that there are some people who might read this who have met me. I might even meet some of you I've never met before. And all will look at me differently and size me up, divide me up and wonder. But, to be perfectly frank, by the time you've had an exorcist scene in a hospital and the multiple scans to go with it you're over being embarrassed. It isn't me squirming in my seat over the topic. It is you.
So, nyeeer. :P
Now, goodnight and sleep tight. This has helped me sort through some jumbled thoughts and I hope it helps you with your situation or with that of someone you know.
Update a week later: My chance is still with me despite the massive scare and I'm shocked, stunned, terrified, unsure what to do, suppressing emotions, waiting for reality to come crashing down and trying to remember just what I'm supposed to do. Who knows if it is actually working but the body is up and running with the idea that it is. At the very least I'll try for calm and no dreaming. The family dream is for later if it all works out.
Update a week later: Well, I finally cracked and went to the doctor as unlike nearly every other time, my pregnancy has continued. I did the blood test and the doctor has said "Congratulations, you're pregnant." Funnily enough, it was the same doctor in a family practice and his response wasn't too different from last time, as was the advice. I did mention that I'd felt some endometriosis symptoms when it was due to strike but he said I shouldn't feel anything of the sort while pregnant. I don't believe him and from reports I've read from others with endometriosis, while they were pregnant they suffered from constant cramps, bleeding and other such worries. Me, my scarring became really tender and sore (scary), my weight went up then suddenly dropped (scary), I spotted a tiny bit though any is unusual for me as most of the endometriosis is well and truly internal (scary), and some of the pregnancy symptoms cooled off at the same time (boobs went from someone had nipple crippled me for hours to just flicked them a bit, if that makes sense). I worried and wondered but nothing drastic happened and my temperature stayed high. I still don't know if there's a heartbeat or if anything is really working and likely won't until February, if it lasts that long, as I'm being moved off to an obstetrician who's on holidays in January. Good times of emotion suppression and weird sleep patterns. So, I suppose I'll find out one way or another past the three months stage. There's hope but there's also a bit of the usual resigned and amused "Aw, here we go..." (quoting my sister as she fell out of a kayak into croc-infested rapids and was quickly whisked away. Don't worry, she and all the rest of us survived that lil escapade.)
Update a week later: Urk. Feeling a tad under the weather, as they say. It is a bit embarrassing to have to go and sleep twice during a party and call it a night a good 4 hours earlier than everyone else. But, oh well...
I've picked up a few tricks, which are coming in handy. Nausea gets worse when you're tired so either drink and wake up then eat or eat a little before sleep and drink a mouthful of water whenever you wake at night. Does increase the toilet runs a little but at least there's no porcelain affair. I still run into trouble but haven't lost a meal this time round.
Anyway, as you can guess, it is all still here and if it is working then elbows and knees and ankles are getting formed so that it can kick me all the better later on. It feels more stable than it did even last week, which has reduced the scariness of it all if not the unknown factors.
I had a sneaky little whirl of imagination on actually thinking I could think about names before I shut that down. It is too soon for that sort of thing. For those of you familiar with losing lots of bubs, you probably can understand that hope breeds heartache. So, a stable and calm approach for now. Neither up nor down in perspective, just slogging through the tiredness and "gak, that looks or smells awful". Do not get me started on the thought of spices... Shudder. Chicken spring rolls on the other hand: GIMMIE!
There was one truly annoying thing about Christmas and yesterday's party. Cheese anything (real cheese, cheese Doritos, Cheezels etc.) smells like bliss. I want to gorge but I'm allergic to milk and having such things will increase the pain and skin problems enormously. And by smells, I mean the entire room and some besides just smells like lovely, lovely cheese - one of my all time favourite foods when growing up. Damn these allergies.
Well, I see a doc on Feb 4th but am unlikely to get any answers that day. Until then it is just rambling mind, nose issues (smells and snuffiness), tummy issues and tiredness. At least there's holidays in this house for another 2 weeks. That means I won't feel so pressured to go all out with writing and my other projects. Writing tired is an interesting thing. You end up with the above sort of waffle, which doesn't really work for a more structured piece... I have come up with a few good ideas though. Whoever invented notebooks has my eternal thanks.
Update a week later: It has been an odd week, I have to say. Meeting people who know makes you have to think about possible futures which can confuse the brain. Also, there is a noticeable difference in attitudes between those with successes under their belts and me. It makes me feel a bit awkward and like I'm not facing reality properly. But oh well, we each do what we believe is best for our survival in such tumultuous times. Some think diving into the dreams is the best way to set up the life, others to hold back until confirmation is there. I'm a hold backer but I can't help having some thoughts about it all. It is uncontrollable really as, well, basically my body's been hijacked. So, as you can guess, I'm still baking. I met another doc at 9 and 5 days cooked and got a reference for an NT scan in the 12th week. Bit of a travel and that awful drink too much water and wait experience again but I'll at least find out what's going on earlier than when I see the Ob doc. Had three rough days in a row. Tachycardia and heat got me so I'm taking it easy. At least I didn't get too hot, I think. It is summer here so the heat is kind of hard to avoid. So, that's all the news really.
Update a week later: Another week of tiredness. Towards the end there were a few twinges along with some weight gain and then loss that made me think the endo is still in play but not as much as before. I'm at the point where my mind wants to go ahead and sort out emotions and plans but I still need to hold out until next week. This week is a blood test, which won't let me know much by way of confirmation. So it is cruising again.
Update a week later: The scariest week is past, to be followed by the second scariest week. This is about the time I lost my first bub so I've been a little silent on the issue. This time around though, no sudden stressful surprises. My skin is a wreck and I'm working on it. Really, really dry... With the week of waiting over I'm now up to the week of finding answers. I'll have a scan on Wednesday. I can't really put into words all the conflicting thoughts and emotions I've been having. Suffice it to say that this is a whopper of an issue to think about and it isn't even the only thing I have to deal with right now. So much is happening that it is just a day at a time with a grand master plan vaguely playing in the background. There is no control, just gliding on the winds I'd chosen before.
Update a week later:
Eeeeeee! My lil hopes and dreams from over the last 5 years have finally come true :) Shocked but incredibly happy and already thinking of the challenges to come and how to handle them. There's a lil one and its heart was beating. Always a bonus, that. Also, nose good, kidneys working, neck width in normal range, low chance of down syndrome, arms and legs of the right number and squirming and what I call a nice symmetrical head. That's always a good thing too :)