46 days since egg freezing
It’s been 4 weeks since my last bog entry and 46 days since egg freezing. Sorry it’s been so long between drinks! Half that time I spent still recovering and the other half I had to bury my head in the books and finish my last uni assignment without distraction. Today I’m feeling 1000 times better than the last time I wrote, which is why it’s so important to diarise the bad days in life so you can see how far you’ve come. I’m not completely back to my old self but by tracking my progress I know that I’m getting stronger and fitter every day. I’m going to give you a long list of everything I’ve felt over the past 46 days since my egg retrieval so you can get a real idea of my experience – which of course will likely not be the same as your experience because we’re all so wonderfully different. It’s been a long a difficult recovery so it’s a pretty extensive list but I’m sharing it because it’s something I would’ve liked to read coming from another girl with endo before I embarked on this wild voyage. Reading another person’s experience would not have made my decision for me but it would have prepared me for the things you aren’t warned about. First of all, I hope I didn’t scare anybody off egg freezing with the last description of how I was feeling…
In hindsight and after talking to my ‘life coach’ as I call her, those strange symptoms I was experiencing in my last post were likely caused by the stress or anxiety I was feeling on that particular day, which manifested itself physically. I’m pleased to report I’ve never had that before or since then. I was feeling so upset at how ‘slowly’ I was recovering (which is of course ridiculous when you think of what my body had just endured and coped beautifully with) that my mind began plodding down some dimly lit paths that achieved nothing other than exacerbating how bad I felt and beating myself up for not doing all the things I ‘should have’ been doing and all the things I ‘shouldn’t be’ feeling. Things like…
I shouldn’t be breathless from getting up to go to the bathroom. I shouldn’t be sleeping all day. I should be up and about. I should feel fit and training just as hard and regularly as I was before my injections. I should be able to slowly walk around the block without feeling dizzy. I should be doing my final uni assignment. I should be helping Mum with EndoActive work.
This immediate-future stress quickly spiralled into long-term, way-out-of-my-control stress:
I should be getting a real job. I should be earning money to go traveling and move out. Will I ever be able to get a good job? Will I ever be completely, totally independent? Will I ever travel and adventure again? Will I ever move out of home and live with my mates and meet new people? Will I ever meet someone amazing? If I actually do ever get pregnant and have kids, will I be able to afford their music lessons and take them on holidays and give them Christmas presents? What if I can’t give them Christmas presents! Will I ever amount to anything? WHO AM I?
Seriously, thinking like that will stress anybody out. It’s completely fruitless because as we all know, worrying gets you nowhere. However, I felt so frustrated with myself that day that all I could do was lie down and torture myself with pointless dribble going round and around and around my poor head. Days like this happen when I feel robbed of the life I saw myself living at 23 years old. That’s really dramatic and I actually have a really blessed, wonderful life but when I’m simply not kicking the goals I saw myself kicking it grinds my gears and sometimes gets the better of me.
My egg retrieval was on the October 25th. Over the past 46 days since then I’ve noticed:
– NO ENDO FLARE UPS AND NO PELVIC / ENDO PAIN!!! Actually I’ve noticed this since I came off the pill nearly 3 months ago, which is odd because I’ve been consistently told for a long time now to take the pill continuously in order to treat my endo. There could be another reason why I’ve been pain free since then and I don’t want to blame the intense pain I was experiencing on the pill, which is why today I’m doing a little experiment and putting myself back on it to see what happens. But to have nearly 3 months of ZERO endo pain and several pain-free, natural periods when I wasn’t even getting my period before has felt wonderful. Things were so bad before this that I was assuming my third surgery was just around the corner. Not anymore!
– NAUSEA. This is something that I’m still struggling with every day at different levels of intensity. It ranges from mild to extreme but always seems to be there.
– FATIGUE. This went from very extreme for the first few weeks after egg retrieval to now finally improving. My egg retrieval was excruciatingly painful. However, within a few days I was back at uni handing in assignments, running around like mad doing things for the EndoActive cocktail party/launch and in stilettos giving my speech on the day. I must’ve been running on pure adrenaline because after that I literally just slept and slept non-stop for a week or so. The next 2 weeks I was having naps every afternoon and couldn’t exert much energy without feeling shattered. I generally felt like I was asleep with my eyes open, present but not present and found it rally hard to think I was so tired. The past 3 weeks I’ve felt much more energetic and that energy and strength has been building up gradually each day. I haven’t been having naps, I’ve been waking up earlier, training regularly, got my final uni assignment done, I’ve been babysitting, sorting my life out, running round doing errands and even went away for a hens weekend without crashing and burning afterwards. Feels great to have energy doesn’t it! It’s also something that people without a chronic disease take for granted for sure. I’m so in tune with my body and so hyper-vigilant with how I’m feeling within myself that energy feels like a drug to me now. I feel its effects so much more than I did a few years ago.
– FITNESS MAJORLY REGRESSED. I started training using Kayla Itsines training guide from the beginning again 2 weeks ago. (I haven’t done any ‘progress shots’ cause I’ve been eating a fair amount of chocolate so I don’t feel like I’ve properly started yet… but it’s the silly season so I’m giving myself a break alright?) Before I started doing my injections I was up to Week 5 of her program and feeling seriously fantastic. I felt fit, strong and had loads of energy. To my dismay, I really did need to stop and rest during egg freezing injections and of course during my recovery – I just wasn’t up to it. Looking at my iCal and even 3 or 4 weeks ago I was unable to walk slowly up the road without feeling dizzy, hot, faint and totally out of breath. I’ve had to start the program again because I was just not capable of picking up where I left off. However, for the past 2 weeks I’ve trained 4 times a week and am gradually feeling stronger. The first day, I could only do 15 minutes and couldn’t walk for the next 3 days. Now, I’m doing the full program and my muscles are recovering super quickly. It’s great to measure this and diarise your progress because it’s easy to underestimate just how much improvement you’re making within a week. Yeah it’s annoying to go back to square one but I was basically lying still, barely doing anything for at least 4 weeks so it’s to be expected. Training regularly with a program is the best way to get back on track in my opinion cause you start slow and gradually build.
– BREATHLESSNESS. Wow that isn’t coming up with a red squiggly line underneath like I thought it would! I can remember during my injections my breathing became much shallower and quicker. It wasn’t scary at all it just felt like I really needed to chill out and be still. The nurses at Genea said this was a normal thing to happen during injections because of you’re hormones going ballistic. It’s nowhere near as bad now but I definitely notice my breathing and heart rate is much quicker at rest and I get breathless very easily when I’m working out, even when I have plenty of gas left in the tank. I’m barely drinking any coffee or caffeine and hoping this will die down once my fitness improves more.
– DIZZY/ LIGHT HEADED/ FUNNY VISION. This was much worse in those first few weeks. Now I only notice it sometimes and not every day. I’ve always had a healthily low blood pressure so it may be a little lower or I’m not sure what else. I’m pretty sure I don’t need glasses and I’ve always prided myself on reading puny things from long distances but then again, glasses are well on trend so upping my hipster status and looking more intelligent would not be the world’s end. I’m still pretty sure I don’t need glasses though…
– WEIGHT GAIN. I don’t weigh myself ever but I can 100% tell judging by how I feel and how my clothes are fitting that there is some extra cushioning happening. I’m trying not to let that bother me because logically, the after effects from being jacked up on oestrogen and all those other hormones so my ovaries could house 50 follicles and potential babies could very well result in a few extra kilos. IT’S OK. But I’m only human so yeah that has been doing my head in more than I care to admit. I’m trying to remind myself that it’s not a big deal in the grand scheme of life and that if it’s from the surge in hormones then it’s sure to subside if I continue to live healthily. Crash dieting is no longer a part of my vocabulary and hasn’t been since I was diagnosed with endo so there’ll be none of that. I would say one of the best things that came out of my diagnosis was my change in attitude toward my body in general. That shift in perception is still a work in progress and I have superficial little relapses, which are ridiculous but they are fewer and farther between.
Honestly, I’m embarrassed at how I used to treat my body a couple of years ago. A diet of salads, caffeine, cigarettes and anxiety in the name of being thin seems so fucking brainless to me now but I’m glad a got a wake-up call. I definitely have endo to thank for snapping me out of bad habits and pushing me to grow up a hell of a lot in a short space of time. My attitude now is, why would I want to sabotage the only body I’ve got? Being told that you might never be able to get pregnant makes you realise what’s important. Ovulating is important. Being strong, happy and healthy is important. Dieting is not important. To continue to undernourish my and poison it with synthetic, processed crap while it’s already fighting disease would be a hate crime. Eating real food designed to nourish and heal my body feels great and I’m learning a lot. Hormones make the body do all sorts of crazy things and yeah weight gain is one of them, but I also have 7 perfect eggs in the freezer so I’d say it’s all worth it.
– ZITS. I’m not making this sound appealing at all am I? haha I’m just including this for full disclosure but it’s really not bad at all. A few teeny tiny ones scattered here and there that nobody else can notice except for me (or so I’m told) but then again I’m used to having none. I have been blessed with good skin so I’m not complaining. Again, this is all likely to do with changes in hormones and a pretty normal response that is so mild it’s almost not worth writing about.
So I think that’s everything.
If you’re reading this feeling put off then please don’t. Let’s just remember that the reason I did this was because I have endo – a chronic disease, which effects the immune system. I have a history of having tougher, longer recoveries from procedures or even just the common cold than others would. It’s all relative. Having a chronic disease means that what’s true for someone completely healthy and disease free will likely not be true for me. Girls with endo and other chronic diseases have a compromised immune and endocrine system so little assaults can take a massive toll. I went into this knowing that I wouldn’t bounce back like other women might and that’s ok because I did this to help out future Syl in case she needs it. Also did I mention that my eggs are perfect? If nothing else, going through all this has put my mind at ease in that regard. I know that I’m super fertile with wonderfully healthy eggs and that has encouraged me to continue to take good care of myself so those eggs stay fre$h and jui$y.
Most importantly, let me remind you that my greatest fear of doing egg freezing was that the hormone injections and stopping the pill would cause my disease to run riot and essentially fuck me up royally. That hasn’t happened. Aside from the pain when I woke up from my egg retrieval and for the next 3 days (it was other-worldly that pain) I haven’t experienced any pain whatsoever from endo, no period pain, nothing. I can’t picture myself having another laparoscopy now, whereas a few months ago I thought it was a sure thing – and I’d like to keep it that way because I always wind up feeling worse. I’m so glad I did egg freezing. So so glad. Even if I never use them.
I will keep you posted on how I feel going back on the pill. If my pain and breakthrough bleeding returns, I’ll know why. Should be an interesting experiment!
Caroline
January 7, 2015 @ 4:53 am
Hi Syl,
I promised you I would comment on your blog, so here I am!
Just wanted to say Happy New Year and thank you for sharing your Endo story through your blog. It’s really nice to read of others experiences and it definitely helps me feel less alone.
Having been diagnosed in January 2014 with Stage 2 Endometriosis, I am now grateful to have a name for why I felt like my whole body was packing up and why I was in pain every day. Especially grateful that they found something during surgery, since all the doctors were trying to put me off having diagnostic surgery as “it probably would show nothing”. Ha ha, proved them all wrong!
Since then, the journey has been a complete rollercoaster with 9 hospital stays, 2 more laparoscopies and appointments with all sorts of gastro, immunology etc doctors. After finally having done the rounds and seen practically every gastroenterologist at Auckland Hospital, I have finally been sent back to Gynaecology where I belong!!! Also been diagnosed with Adenomyosis in November, which is yet another mystery to discuss with my Gynaecologist when my next appointment finally happens!
Carrying on has been hard with ongoing pain, nausea, Gilbert’s Syndrome, worsening fatigue and the famous Endo Belly, but I’m trying to stay strong and blogging has definitely helped me to express my feelings and lighten my mental load a little. I’m now on The Pill (since late November) and although it has made my pain a bit more manageable, it’s still not great and not a long term fix, so I’m just waiting for another scan and appointment late January and hoping my Gynaecologist has a plan! I live in hope…
To enter the New Year and still have such an uncertain future is tough, and I definitely understand your feelings about your immediate future and what is going to happen, as it’s quite often on my mind as well.
Anyway, I’m really glad you have so much less pain at the moment and I’m sure you deserve it after all you’ve been through. Let’s hope it stays good for a nice long stretch.
Have a great day and thanks again for sharing.
Caroline 🙂
sylvia
January 9, 2015 @ 1:11 am
So good to hear from you Caroline! Happy new year to you too girl.
I’m so sorry you’ve had such a rough trot, you poor thing you’ve been through so much. I’m feeling extremely lucky right now to be in a pain-free patch but of course you don’t forget what it’s like when everything is terrible. Pain is one thing but the extreme fatigue, gut problems, feeling blue, too many medical appointments, nausea and all the rest of it all at once is hell isn’t it. Often I think to myself, “I wonder if today’s the day when the magic will ware off”. I’m loving feeling so healthy but feel like it’ll go as quickly as it came.
Hope you’ve got some good days in amongst the shitty ones and you’ve had a great summer. I would KILL for some whitebait fritters and kumera chips right now! Can you fedex some to me? My Mum’s a kiwi so I’ve been to NZ a few times. Waiheke Island is so beautiful.
I have a few questions for you…
Remind me how old you are again?
What is Gilbert’s syndrome?
What do you do with yourself in NZ?
Syl x
Caroline
January 9, 2015 @ 2:31 am
Hey Syl,
Thanks so much for replying to my comment
Caroline
January 9, 2015 @ 3:47 am
Oh man, I just typed out a comment and pressed Post and it just posted the first line and the rest disappeared! The wonders of technology…
The reply to your comment came at just the right time as I had a useless appointment with my GP yesterday and needed cheering up 🙂
Yes, it’s been a tough journey and I don’t see it coming to an end any time soon. But hey, it’s just time to get out some more inner strength (although I don’t know how I’ve got any left) and carry on as best I can. Some days it’s really tough but you just have to manage and try to keep going no matter what happens.
I’m so happy for you that you are feeling so well at the moment. Definitely makes getting things done so much easier when you actually feel like doing them. Please try not to dwell on how long it will last (although who’s talking as I do that to myself all the time), just try to enjoy each moment and if the bad days come back, then deal with it when it happens.
Looks like you are having a lovely time in Noosa from the photos on Facebook. My mum’s been there and she says it’s really nice. Also can’t wait to see you on TV advocating for all us Endo Girls! The only way to help our cause is to get it out there, so good on you and your Mum for making it happen.
My summer has been quiet, just spending time with my family. The biggest thing is probably being at home because I spent most of January – April 2014 either in hospital or recovering from surgeries, so didn’t really get a summer last year. Fatigue is really bad though, and I feel like some days I am holding my family back and I get so frustrated with myself because I’m not able to do lots of things.
It’s the little moments that have made my summer though: walking along our local beach, spending time with my brother, first swim since Summer 2012 (if you can call what I manage to do swimming), spending some time in the sun…
Yeah, of course I would send you over some Whitebait Fritters and Kumara Chips if they would be any good by the time they got there on the courier. Perhaps it’s time for another visit to NZ??? Hint hint… Let me know if you come over, as I’d love to have you over for a coffee and a chat 🙂 Yes, Waiheke Island is beautiful – went there a couple of years back and it’s just magic.
Now to your questions…
1. I’m 21, although I’m not feeling very independent right now and am reliant on my family to support me.
2. Gilbert’s Syndrome is something that a lot of the population have (according to my GP anyway). I will try and explain what I know so that it makes sense.
When your red blood cells break down, there is a by product left over from the process called Bilirubin. Usually your body will excrete it and everything’s ok.
In people with Gilbert’s, the body doesn’t get rid of the Bilirubin and it builds up in your body. A lot of people have no symptoms and it is just picked up when you have a blood test for something else that you have elevated Bilirubin levels and the doctors tell you it’s nothing to worry about.
Some people do get symptoms though, and these can include jaundice (yellowish looking skin), fatigue, nausea, cold hands and feet (I have this as my feet turn a lovely shade of purple most days), abdominal pain, dizziness, chemical sensitivity, low alcohol tolerance, sensitivity to medication (maybe that’s why a lot of strong pain and anti nausea medications don’t work on me?) etc.
Doctors have always said to me that I shouldn’t have any symptoms and even a liver specialist that I was sent to couldn’t tell me if some of my random non-Endo related symptoms were because of Gilbert’s. All he could confirm was that I did have it and there wasn’t anything he could do about it. All that I know I have found out on the internet as there are lots of young people in the UK with a lot of symptoms from Gilbert’s who are also struggling to get doctors to listen to them, so they are sharing their stories on forums online.
3. What do I do in NZ? Well, at the moment not much due to my pain, severe fatigue, lack of concentration and other symptoms which mean I can’t work or study right now.
In 2013 I was working as a Teacher Aide at a school for children and young people with special needs, which I loved doing. Also was considering further study to become a Physio or Occupational Therapist.
All of this has just gone out the window as my Endo (although I didn’t know then exactly what was wrong) got so bad that I was throwing up in the bathroom at school in my 10 minute morning tea break, which isn’t really something I would recommend. Then in early 2014 ended up in hospital Emergency Department twice in one week and everything sort of came to a grinding halt!
So at the moment I blog, walk, do yoga, play my guitar (which I started to teach myself in September so I could achieve something while I’m not able to do much), help around the house, do art, go out a bit (mostly to medical appointments) and just do whatever I can manage until I have to stop and rest. It’s hard to live like this and have to limit my activities just to get from one end of the day to the other before I can fall into bed, but it’s just what I have to do right now. Coming into the New Year and still having an uncertain immediate future is really hard, but I’m trying to accept my broken body for what it is and look after it as best I can.
4. Yes, of course you can read my blog!! In fact, I see you have posted a comment so you must have already found it. I’m mostly happy blogging, although it still feels a little weird spilling my thoughts out onto the internet! But I figure, if one girl gets in touch and I can make a small difference to one person feeling alone, then I’m happy to do whatever I can.
I actually have 3 blogs now!!! I started with a general health / feelings / life blog, then made Girl + Endo (www.nzendogirl.blogspot.com) to talk more specifically about the Gynae side of things. This year, I have challenged myself to complete a Photo 365 Challenge to find the beauty in my everyday life, so its at http://www.capturedbycaro.blogspot.com . Didn’t mean to have multiple blogs, but here I am. The most fun part for me is actually the design of the layout and colours, fonts etc at the beginning. Guess that comes from the bit of web design and online media I have done for a couple of people.
This is probably now much longer than a blog comment is supposed to be, so I’ll stop here.
Have a lovely afternoon in Noosa
Caroline 🙂
Samantha Taylor
July 29, 2015 @ 11:00 am
Hi Sylvia,
I’m a journalist currently writing a piece about women freezing their eggs, and the links between fertility and career paths. While I understand you chose to freeze your eggs due to health reasons, I’d still love to have a chat with you about your experiences with egg freezing.
If you’re interested in chatting with me, what would be the best way to contact you? I’d only need a few short moments of your time.
Thanks,
Samantha.
sammitaylor2@gmail.com
Emma
November 24, 2015 @ 7:11 am
Hi Syl,
I’m 26 and I have just been told that I should freeze my eggs. I was diagnosed with Endo at 15. I was lucky to be diagnosed early, but had the pain since 12 years old. I used to think I was allergic to eggs, as every time I got sick I had eaten them (although the pain would last for 5 days.. It was only thing I could think of). I’ve been on different types of medication since then to try and combat the disease, as well as having two surgeries. I’ve tried injections, the implanon, the pill and now the mirena – which doesn’t seem to be helping either. I can manage to get rid of the bleeding (but have to take two types of medication) but have never been able to get rid of the pain.
I never thought I wanted kids, but I think that now that I really may not be able to have them has made me realise that I was saying that to save face. I knew it might of been a possibility, so by telling everyone I didn’t want kids, it wouldn’t hurt as much when I never got pregnant.
How did you go about beginning the egg freezing? Did you have tests beforehand?
I’ve been told that the younger I am, the ‘better’ the eggs. So I am really starting to look into egg freezing.
I’m also worried about the costs, how much was it? (If you don’t mind me asking..). I’ve heard it’s around $10,000. I’m a struggling intern, just out of university – so don’t know how I’d pay for it. But I’m looking as it as an investment for my future. I may not own a house, but at least I’ll have a chance at babies!
Your fellow Endo sister,
Emma
sylvia
December 4, 2015 @ 11:50 pm
Hi Emma,
that is so strange about the egg allergy! I’ve heard that if you really follow the ‘endo diet’ then you should avoid eggs (along with A LOT of other things). I can’t remember why though… hormones? I kind of just follow my own anti-inflammatory, gluten free diet and find that it helps me so much.
I’m actually considering another round of egg freezing because I only got 7 eggs the last time I did it. From memory, because the procedure was for ‘medical purposes’ (Endo) we got most of the money back from medicare. I think the price was about $10-12,000 but we were out of pocket $2000 which is amazing really. Full price is for ‘social egg freezing’ which is a ridiculous term but anyway. I’m not sure what it would cost me to do it again but I’ll be researching that soon.
I did egg freezing through Genea. You can always phone and ask questions or make an appointment to chat about things either there or with another doctor who knows about egg freezing. Dr Natasha Andreadis here is Sydney at RPA is my gynae who also did my egg freezing and she’s lovely. Keep in mind that appointments with specialists even just for a chat are expensive too. of course you know that already! A test to have before hand is to test your AMH levels – not always completely accurate but kind of an indicator of whether you’re producing eggs or not. Again, not always accurate! Good luck Emma! x x x Syl