The endocoaster

Here is a visual of my life with endo. I regularly stop and think about where I am on the coaster. Today I am teetering on the edge ready to tip over to section 8 and the black hole below.

I thought it might be useful for my friends and family to see the insides of an endo mind during the different stages. I am also planning on writing a "what NOT to say" for each stage of the journey.
1. Start of period. “I can do this. This month I am going to reinvent myself. I am going to try something new. I will try naturopathy- that will fix it! Yes! I know it is going to be different this month!”
2. Reality sets in. Some negative thoughts creep in too. “How will this be different?”
3. “I don’t feel too bad. Maybe it is working? I will keep taking this Eye of Newt and slapping a wet fish over my head each morning. This might just be working…”
4. Ovulation pain. “Maybe if I keep busy I will pretend that my ovaries aren’t being stabbed to death with internal knives. Maybe, just maybe, if I sit down and meditate it won’t feel like I walked 100 kms this morning and now have a stich that just won’t go away…”
5. The 2 week wait. “It will be fine. No it won’t. I will stop thinking about it. I will stop thinking about it. I will stop thinking about it. It will be fine. No it won’t. It has never been fine up until now so why would it start? But I have been having all that acupuncture that will surely make a big difference…”
6. Pre-menstrual symptoms begin. “Oh great. Here we go again. Stupid lettuce only diet mustn’t have worked! Maybe I am just dreaming the symptoms up and they aren’t really symptoms and maybe the 100 vitamin tablets a day HAVE worked? Nope I am definitely irritable. Great. Here we go again. Well I hope the first and second day aren’t hell…”
7. Period starts. “I can’t freaking believe after all the stuff I have done that I still have to go through this sh*t. I just want to cut the bottom half of my body off. I know I hate taking any medication but I just want anything that will get rid of this incredible pain.
8. The tiredness sets in. “I just am not sure how much more of this crap I can go through. Why the bloody hell is this happening to me? How can I possibly put up with this sh*t for the rest of my life. Will there ever be any end to this f*cked up roller coaster I am on?”
9. The wallowing begins. (Note: section 9 is not compulsory- there is a special escape route that takes some coaster carriages from 8 straight back up to 1. The escape route is usually opened by a fortunate lack of sad songs on the radio and or a few wines with friends/family :)

After 8 it is a slow ascent up to 1 again with thoughts of what the next reinvention will be.(After all, Einstein's theory of insanity is doing the same thing over and over and expecting a different result...) "Maybe a trip to the fortune teller this time...or a weekly massage to reduce stress...maybe I will read yet another book of contradictory advice on how to fix endo".
And so the carriage goes up again for another emotionally charged ride on the month long Endocoaster. One thing is for sure, if I ever get my hands on the person controlling this thing they are in serious dog poo!


I would love your feedback. What does your Endocoaster look like? What can people do to help you at each section along the way?

My endo recipe book

When I finally decided I had to get serious about attacking this stupid endo I found myself lost in a world of "you cant's..." Can't eat that, can't eat this... etc etc.
I craved a mentor or a bible that I could refer to to point me in the right direction. Something I could use a point of reference to get me started. I couldn't find any books that had realistic recipes for real mums with the real families that also needed to be fed.
So, I started creating this endo recipe book to serve just that purpose.
Click here to access the book (hopefully it works this time) - remember it is not finished yet!!!
I would love your thoughts/feedback or any recipes etc you would be happy to add to it.

Converting others to my endo diet 'religion'

I recently read a blogpost titled: Is “Eating Healthy” like a new form of religion? Do we have to “believe” to get it? Are we just strange for doing it?
This article was focussed on the strange sensation one goes through when they 'see the light' on how changing your diet can positively impact your health and how you feel as if you are converting other people to a new religion when you try and spread the word about it. I nodded my head in agreement the entire way through reading this article as it really encompassed exactly how I have felt since I myself 'saw the light'.

How I came to see the light
In December 2010, after being told that my only real chance of falling pregnant was with IVF, I decided that I needed to take charge of what was happening with my body. I was not about to sit back and accept an unnatural (not to mention unconventionally expensive both financially and emotionally) method of conception. I felt I had to exhaust all avenues BEFORE turning to what I consider to be a last resort (not a first resort as believed by many doctors). I went and saw a naturopath/nutritionist who specialises in infertility. She asked me many questions about my current lifestyle, eating habits etc. She then explained what she believed I needed to do- I needed to follow a wheat/dairy/alcohol/potato free diet. I also needed to increase my consumption of nuts and vegies and turn to more natural foods in general. I commenced the wheat/alcohol free part of the diet immediately and after 3 days of withdrawals I sprung out of bed on the fourth day full of energy ready to take anything on. I couldn’t believe the huge hit of energy I gained just 1 week after cutting wheat from my diet. I also discovered after just 4 days of being on the diet that my permanent bloating had also gone- I realised that it is actually possible to eat a meal, feel full and NOT be bloated. This was a huge breakthrough for me!

Culling dairy from the diet
After 1 month on the wheat/alcohol free diet (with a slightly reduced intake of dairy) I continued to suffer knife stabbing pain with my period. Curled up on the couch in the foetal position I decided it was time to get serious. If I didn’t want to continue to put up with this then I had to do something about...say goodbye to the dairy for real. From that day forward I stopped all bovine dairy (except Greek style yoghurt as this was permitted by my naturopath). The change was again amazing. I felt even more energetic and lost weight as an added bonus! I found it much easier to cut dairy out of my diet this month as I read the amazing book “Endometriosis: A guide t healing and fertility through nutrition.” In this book Dianne the author explains that dairy is inflammatory to the endo and so contributes to the pain each month.

Converting others to my new religion
My naturopath said that the endo diet would probably take 3 months to take full effect on my period but for me it actually took 4 (probably because I wasn’t committed to the dairy from the start). I am not complaining though!! After following the diet for 4 months I had the first period in years that didn’t require ANY pain relief. I wasn’t completely pain free- I still did have pain- but it was nowhere near the levels I had previously experienced. The other hugely noticeable difference was how light it was (and has been ever since). I came to realise very quickly that there are no down sides to this diet- why isn’t everyone else following it? You get to feel awake, energetic and ‘light’, not have to worry about being knocked out with pain every period AND lose weight. I needed to let everyone know about this. Short of standing on a soap box down the mall with a megaphone I have tried to convert as many people as I can to this religion. To me it is insane- why isn’t everyone doing this? Why are we wasting millions of dollars every year on tablets and doctors visits when we could all be feeling this good? I have found that I even get super frustrated with other people now when I have friends saying how sluggish they always feel and how high their blood pressure is etc while they are sitting there eating a cheese laden deep fried parmagiana drinking a can of soft drink. I often think “can’t these people see the obvious?!”
However, just as mention in the article, when I try and offer snippets of my ‘religion’ I often get told that my diet is ‘insanely healthy’ or ‘ridiculously healthy’ as if it is ME who is the basketcase!
Oh well, I have seen the light and I shall follow it to the end...I will try and ‘save’ as many other people as I can along the way but I cannot force others to see what I now see as the bleeding obvious- your body puts out what it gets in. Junk in = junk out. Hallelujah to my naturopath for converting me and why on earth didn’t I see this light earlier?

The real effects of endo.

You can look at all the signs and symptoms on any health website: period pain, bloating, nausea, etc etc. but what are the REAL effects of endo?
Hoping that this is my last (possibly second last) period before my next big operation means 2 things...
1) I feel I definitely could not go through another draining, painful life sucking period
2) I thought I should blog about what it feels like to live with severe endo so I could look back at this in my post-op life and think how lucky I am that I no longer have to go through it every month. (It's wishful thinking I know)
So here goes...my life with endo.

When people think endometriosis means you get bad period pain I sometimes get annoyed. I don't think that explanation anywhere near conveys the pain associated with having a period.

I feel it is being passed off as a few cramps in the stomach and maybe a sore back.
For me the real pain of a period is debilitating. I cannot move. I simply cannot stand up and if I do I risk knife stabbing pains in my lower abdomen/ovaries and feeling that there is so much downwards pressure in my lower abdomen/bowel that all my insides could fall out at any minute. Along with the knife stabbing pain is a dull ache that will not go away. To reduce some of these pains I usually have numerous painkilling tablets and lay down in the fetal position without moving for at least an hour until the meds kick in. Even after the meds kick in the nagging aching feeling usually remains and I cannot function as a normal human for the rest of the day. My appetite is effected and I can't drink too much as it will cause extra downwards pressure due to my bladder expanding. Before I started eating a wheat free diet all this pain was compounded by the fact that my stomach was permanently bloated to the max (particularly around the time of my period) which meant that eating or drinking ANYTHING at period time made everything worse. Sometimes I had to force myself to have water just so I could have my tablets.

While that pain lasts 2 days for every period (so really only 2 days out of 30) it happens every month. I originally thought I could deal with this but as the years have progressed I am now at the point where I can not do it any more. It may only be 2 days but think of the ramifications of having that pain for 2 days every month. I have to look ahead on the calendar to see what is going to be effected. Will it be a weekend or a work day? Can I schedule my work day so I can sit down all day or get home quickly if I need to? Am I going to ruin a family holiday or a weekend away by not being human? You can see the how the ripples of suffering start to effect my immediate family.

Endometriosis is a disease suffered by the whole family- not just the individual.

Now that I have suffered from the disease for so long so much of my life has been affected by endo. The pain of endo goes on longer than the first 2 days of my period. I need to make sure I go to the toilet regularly to stop my bladder from expanding too much and causing pain. Almost anything to do with the bowel is painful. Nearly every time I go to the toilet I am reminded of endo in the form of more pain.

Pain during intercourse is also a side effect of endo. Luckily for me it is not every time and it is fine more often than it is not but I still worry about it. Nothing like anxiety to kill a good mood! Again, this effects my wonderful husband and reiterates that endo is a disease suffered by the whole family.

Aside from all that pain I think the thing I hate the most about endo is how controlling it is. It dictates what I can and can't do for 2 whole days every month (and a few times in between). It means that I miss out on participating in family events and basic things like helping my husband with housework. Sometimes I have so much pain that I can't stand up for long enough to get my own breakfast in the morning or to walk to the kitchen to fill my glass with water. I am just so lucky that my husband is so supportive and understanding and does all these things for me when I ask him to but I just hate having to ask. I hate becoming a complete burden on him every month. I hate laying still on the couch while he does all the work. I hate the fact that I would really love to do something productive while laying on the couch but my book is in the next room and I can't get up for 2 minutes just to get it.

I read a fantastic analogy of living with pain on a Facebook page today. When I read it I thought that it applies exactly to my life with endo. The author says that living with an illness is like starting the day with 12 spoons and you have to give 1 of them up for every draining task during the day. every day you need to balance up the activities that you do to ensure you have enough spoons left to deal with everything.

Well as I said- hopefully I will not have to put up with this for much longer. I will have surgery soon to remove as much endo as possible and then continue my wheat free / dairy free diet to make sure it doesn't ever get this bad again. Fingers crossed!

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My endo story

The early days
I'm a 27 years old and have suffered painful periods from around the age of 16 (from what I can remember). My twin sister suffers from endo as well.From about the age of 19 I thought that I too had endo but I didn't really do anything about it. I thought I would just put up with the excruciating period pain forever and there was nothing more to it.

Super helpful doctors (not) and trying to work out myself if I had endo
About 7 years ago I went to complain to the doctor about painful periods, she told me it was called dysmenorrhea (painful periods) and even gave me a printed out info sheet in it (how helpful). I returned to a different doctor about 4 years later determined to tell him I wanted a laparascopy. He told me the only way to fix it was to go on the pill. (Which I have never been interested in) He sent me for an internal ultrasound. This ultrasound showed nothing unusual although the examination itself was very very painful. As this ultrasound showed nothing the doctor did/suggested nothing further.

Talking myself out of endo
I talked myself out of my pain being endo as, after reading loads of info on endo websites, I realised that my periods weren't excruciating EVERY time- sometimes I had 2 or 3 'easy' ones in a row. Lots of websites said that the pain last the entire period too- my only lasted the first 2-3 days. My periods were only heavy on the first 2 days compared to the info on the websites. There were lots of differences between the info the websites and my symptoms. I must have been sooking about nothing, I was imagining things- the doctor was right it IS normal etc etc. I convinced myself it was nothing- I should get on with my life and just deal with it- after all, it was only 2 -3 days a month.

The one big symptom that cannot be dismissed...
My husband and I decided to start a family, we had held off until a checklist of milestones had been reached- credit card paid off, new house purchased, new pergola purchased etc etc. The time had come, all we had to do was fall pregnant. Shouldn't take too long .... After 6 months of waiting I started to lose hope and researched endo again...there it was- the deal breaking symptom- infertility!

An alternative approach to endo
A very good friend of mine had been going through IVF and she recommended Chinese Herbal Medicine to me. The fact that she was recommending this to me and she was THE biggest anti-natural therapies person I knew (besides my husband) made me realise that it must be good! I started seeing a Chinese herbalist in my town and she gave me 5 brown lunch bags full of bark and other plant items that I had never seen in my life. She warned me that it wouldn't taste nice but  I would get used to it. I was to boil it up for 1.5 hours hours and have half a cup in the morning and half a cup at night. It was soooo disgusting that on my first few days/weeks of it I had to have a sip of the jungle juice / goop (as I call it) and a mouthful of water. Disgusting!!! After only 2 months I noticed a very positive change in my pain-  I still had pain but not as bad and absolutely no period related back pain whatsoever.

Some symptoms had improved but not the big one...
Once we hit the 12 month mark I sent my husband off for a sperm test. It cam back fine and then I knew it was definitely me. I went back to the doctor and asked for a laparoscopy. He sent me for another ultrasound (again showing nothing) and referred me to a female gyno. I rang her office as soon as I got out of the doctor to try and get in as soon as possible. I had to wait 2.5 weeks to get int to see her (AGGGGEESSS in my book!) When I went and saw her there was no messing around. She ordered a laparascopy be done to see exactly what we were dealing with. I booked in (another 3 week wait). I had the surgery done and recovered retty quickly. I only had a week off work and hardly had any shoulder tip pain at all. After the surgery  was told I would have an appointment with her in 2 weeks to fins out how it went. I couldn't believe I had to wait that long to hear how it went!

2 weeks later, I got the verdict...
The gyno told me that I have severe endo and I would need to have further surgery that would need to be done by an endo removal specialist. She said it was everywhere including on my bowel. It is highly unlikely (if impossible) for me to fall pregnant naturally due to the damage caused by the endo (blocked tubes etc). IVF would be my only chance of falling pregnant. "Oh, and you have a weirdly shaped uterus, I think it's u shaped but we'll see what the specialist says when you see him"
I was devastated after hearing this news, bawled in the car and for the next few days. My husband was amazingly supportive (always is) and after a week I decided to pick myself up again and tackle this monster head on. I booked in to the specialist in Melbourne. A 3 month wait was the soonest appointment. More crying at the thought of waiting allllll that time. "Can't they do it tomorrow so I can get on with this?!" I decided I wasn't going to sit around and wait for things to happen to me, I need to do what I can while I can. Someone once said you are the writer of your own story. So that brings me to where I am now-

It is now Me VS the Endo.