LIVING WITH ENDO.

Imagine, ten years old and far from being a teenager yet. Having spent the last year or more vomiting monthly and thinking it was continuous tummy bugs. It was then that it happened, the ‘lady’ friend that is both a blessing and curse arrived and my life was never the same again. Turns out my body had been preparing itself for this arrival so I had been suffering in a way since around 8/9 years of age. Not exactly how I wished to live my childhood and boy did it get worse from here.

Although thinking back to those times are quite blurry and having something like this monthly meant it all kind of merged into one big yuck memory and I question how I truly handled living the way I did each month from 10 til 16.

The beginning/What is endometriosis…

Heavy periods were always the way for me and being so young I had to learn how to use sanitary pads and the process of dealing with this womanly experience rather fast. For the past couple of years I have been hearing of so many woman who have suffered the same as me or even worse but as I lived my days as a child and then teenager and so on I felt like it was only me, myself and I who was suffering.

Unfortunately Endometriosis runs in the family with my mum also suffering from heavy and painful periods before having children. This meant that I had a higher chance of experiencing the same. It’s funny how life works though as my sister was lucky enough to not have any issues like this.

Before I continue, for those of you unsure of what Endometriosis is here’s a little info –

Endometriosis is a common inflammatory condition where tissue similar to the lining of the uterus (endometrium) is found outside the uterus. The tissue can form lesions, nodules and cysts which are mostly found in the pelvis, the Pouch of Douglas, ovaries, bowel, ligaments and bladder. It can be common for adhesions (fibrous scar tissue which causes internal organs or tissue to stick together) to form. Cysts on an ovary (endometriomas) may also develop in more advanced stages of the disease. 
Common symptoms include pelvic pain, unusual menstrual bleeding, and difficulty getting pregnant. In New Zealand, it is estimated the condition affects 120,000 or one in ten girls and women. 
Endometriosis can usually be effectively managed through medication and/or surgery and lifestyle modifications.
– info from Southern Cross Medical Library

Even though mum had a history of this horrid disease it wasn’t until six years of me suffering that we actually got confirmation that endometriosis was what I had. Although the signs were all very obvious that this was what was happening to my body. The symptoms range for different people and I have heard of some sufferers being bed ridden for days on end, not being able to work and going in and out of surgery on the regular. When living with symptoms such as horrific pain monthly is all you have ever known you start to believe that maybe it’s just normal and you have to push through. It’s when you hear of those woman who can’t even tell they have their period that you know you aren’t living the life you should be.

The symptoms…

If you were to paint a picture in your head, imagine standing doing your daily life and then being hit with the most intense lower abdominal pain. I described it feeling like someone was putting their hand inside you and literally pulling your insides out. Or being stabbed in that area of your body a lot (Gory I know but hey this is the real shit). With this intense feeling your focus leaves you, you want to vomit, you grab your stomach and gradually curl over and fall to the ground. Imagine having this feeling come and go so often that you just felt like you could hardly move and staying in a ball on the ground rocking side to side was the only way you somewhat survived. Think about wanting to vomit, sometimes having diarrhea, not wanting to eat at sometimes and not being able to function physically much at all. Also suffering from intense back ache as well. This was my life.

I am so grateful that I spent these first six years homeschooling as if I was attending an intermediate or high school my attendance would have been poorly. Along with that I would have never coped physically or mentally at this time of each month. I did somehow dance my way through having this disease though which blows my mind now that I think of it.

Alongside all of that horrific pain I struggled with intense emotions for at least two weeks of every month. I felt so down and so emotional I felt like the world was falling down around me even though my life was far from it.

Like I said above I’m unsure how I survived living like this for so many years but the only things that somewhat got me through were nurofen zavance and hot water bottles.

Key-hole surgery…

Sixteen years of age I finally had an operation. We went through a private woman’s gynaecology and shared my story. You see apart from the symptom signs theres no other way to fully diagnose the disease of endometriosis other then going ahead and having a surgery to see what can be found. It was nerve-racking and I remember sitting in her doctors room having the conversation about what it would entail, scary but it needed to be done.

It was my first surgery I had ever really had and the memory of me leaving my parents and being wheeled into theatre is still with me quite clearly. I can remember waking up and all that jazz but not much of the recovery. I do know I wasn’t allowed to stretch and do many active things for a while. The surgery had involved cutting three little holes into my stomach (one in the belly button, one to the side of my abdomen and one right at the bottom of my lower abdomen).

At the same time of the surgery a Progestin IUD known as a mirena (see picture below) was placed inside me. Being a form of contraception it was put in to hopefully help control my periods from now on too. It releases small amounts of a progestin hormone called levonorgestrel into the uterus and sits in there until you wish for it to be removed. It can last up to about 5 years. Theres also a percentage of woman that wont get a period at all once they are on this kind of contraception.

I remember going in for a follow up appointment a while after the surgery and the surgeon showed me pictures of what they found in my body. I’m not one for gory stuff at all so I had a very quick glimpse but they pretty much looked like big purple circles, balls as such. She explained to me that they found a lot inside me and I definitely had a bad case. They had found not only some in my uterus but also around my bowel hence the horrid back ache and also in my fallopian tubes. It’s this part of the talk I remember most. That’s when she told me I actually had a worse case of endometriosis and instead what I was suffering was endosalpingiosis. Endosalpingiosis is the presence of ectopic, cystic glands outside the fallopian tube that are lined with fallopian tube-type ciliated epithelium.

The conversation led to her expressing that she had found some in my fallopian tubes and had to scrape it out carefully. Due to this they would not know what the scaring and healing would be like and the chances of falling pregnant easily may have now lessoned. That of course hit me hard. From then on until the day I found out I was pregnant with Mason those words repeated in the back of my mind often.

The following years, 16 to 24…

Thankfully the mirena worked. For the following two years I had no pain and no period. It was like I was a new me and it was incredible. Then I randomly started to bleed again, of course you worry whats up so off I went to get checked out. Five years the mirena was meant to last, ha yeah right. Out came the mirena and it was perfectly fine just empty. My body had needed the progestin hormone so much that it had used it up a lot faster then normal.

Instead of getting another in as I was so not keen to be awake for that the surgeon suggested the mini pill. At this time I had not long met Nathan and boy was it not good timing. The mini pill made me crazy, so insanely emotional and I truly thought that this amazing man was going to run for the hills. We decided together that it would be ok for me to not be on anything and to just see how I would go. The following years I had a period yes but it was ‘normal’ and I was so grateful and stoked.

I think it was around 2014/2015 that the pain started to creep up on me again. It’s all a bit of a blur and I can’t remember if it was as bad as those pre teen/teenage years. I don’t think it was but it was now hard to deal with in regards to work life.The first day of my period was always the worst. It often hit me in the middle of the night and I would be crying and couldn’t lay still. I would have to try get up and eat dry crackers quickly just so I could take meds and stumble my way around the kitchen preparing a hot water bottle. Once a month with horrific pain not allowing me to work let alone function was so hard and I found people weren’t understanding at all.

I will never forget this one morning where I had to ring into work early in the morning cause I always seemed to get my period during the early hours of the morning and the assistant supervisor was in charge that day. I was in bad pain, so tired, worried about ringing her so early and also freaking out she wouldn’t understand. Unfortunately I was right to do so, I will never forget the words she said to me. “Oh come on Sigourney, its a period every woman gets one. Can you really not come in”I felt sick to my stomach and so hurt inside. To be questioned like that and treated like I was overreacting was awful.No two woman are the same and we all need to respect that! It made me nervous for the months still approaching and I knew I couldn’t keep doing this anymore.
July 2015 I decided to get another mirena put in. This time I was awake and lets just say it was hell. I went alone to family planning and afterwards I suffered with nausea and intense pain for like a day and a half. It was like I was going through a horrific period all over again. Finally it settled down but this time it didn’t take my period away and not even the pain completely either. Nath and I had decided for me to get one again to tie us over until we started trying for children. I would have loved to have gone ahead and begun trying but we still wanted to get married first.

The journey to conception…

I kept going for check ups in regards to what was going on with my periods and asking the doctor if there was anyway we could find out if my endo had returned. Unfortunately the response was always the same. An operation was the only option and I was advised to wait to remove the mirena until after our wedding and then go for it with the baby making process!

I really did expect to try and try and try for a baby. So many years the thought had haunted my mind. My doctor is amazing and due to the strings of my mirena not anywhere to be seen she had to be very careful and find them to enable herself to remove it from my body. Again, another memory I will never forget when she was determined to do this for me and she achieved it by then dancing around the room with this lovely gross IUD attached to some plier type instrument. All part of the journey!

Nath and I were quite particular on when we wanted to start trying as although we just wanted a baby we also wanted to try avoid having a December baby. The start of May was the month.

The first of May rolled round and our conception process began. I remember we did the deed maybe 5 times within the space of 14 days before I started to feel eh again with my period soon to be due. As all you mamas I’m sure know the feeling of the start of pregnancy and your period are quite similar so here I was questioning over and over if I would be pregnant and looking for every sign I could. The 28th of May rolled round, it was a Sunday and I was due for my period that day or I was a day late maybe.
I couldn’t wait anymore and got over ready about the signs online so snuck into the bathroom whilst Nath was on the couch on the laptop.

I took out the test and completed the steps. Instantly those bright coloured lines appeared and I couldn’t quite believe it. I don’t think I knew how to react, happiness? excitement? is it accurate? maybe it’s wrong? do I cry right now?
With a huge grin on my face I went to the lounge and told Nath to come here. Still smiling I pointed down and said “I think we are having a baby!” his face lit up and you could tell we both just didn’t quite know what to do. Our little boy was already growing inside us and a true miracle had happened. We jumped into each others arms with tears in our eyes and the biggest smiles on our dials. We were beyond grateful for the gift we had just been given. Mason Rawiri was about to join our world.

If you have any questions please do leave a comment below! I would love to hear from you and believe all us woman have to stick together.
Lots of aroha,
S xx

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