Category Archives: Endometriosis

The Big Update

It’s been a while. It has felt pointless to update as for so long we have been stuck in limbo. There has been lots of feelings and lots of discussions, our conversations have daily gone around and around in circles. But finally, finally, it’s time to get moving again.

At the end of October last year, I went for my appointment with Fertility Associates. Some things were resolved around working with my husband, but some things weren’t. Regardless, we were accepted onto the public waiting list in November, and our 12-18 month wait time was going to be used to see if we could come up with a solution for the Big Blood Test Hurdle.

On good days, he was confident. He would say that he could do this, that we should accept that IVF was coming and we’ve got another chance.

On bad days, he would tell me he’d rather die. He would tell me that it was beyond him, that he wanted to run away. He would tell me that sometimes he hated me (but not really!)

So we were on the waiting list, either to go ahead or pull out, and it felt pretty 50/50.

Other than that, things had been improving. No crazy hormones meant I was coping well. While the limbo was stressful, it did also mean we had hope. We made plans for making day to day life better, my husband finally found some drugs that improved his coping abilities, and we were clawing our way back up out of the hole we found ourselves in.

A few days ago, we received a letter saying we were nearing the top of the waiting list – 6 months instead of the 12 months I was expecting. We weren’t ready. The husband wasn’t prepared, we hadn’t finalised a plan. We had 4 weeks to get things sorted or we we’re bumped off. Pressure!

Long story short – after lots of back and forth over the last few days, today some lovely ladies at a private lab accommodated us, and with a double up of anti anxiety meds, a familiar setting, and a lovely calm nurse, the blood test was done!

Words can’t express my feelings, in fact I’m tearing up a bit now that the day is winding down and it’s settled in. My husband basically walked through fire today purely out of his love for me. It was his total worst nightmare, and he fought and fought until he made it.

I can’t be the only one in this position, and not everyone is going to be able end up with a good resolution. I didn’t think we would. But I’m so proud of him, and if it hadn’t worked out I would be equally as proud. The result was up in the air, but that doesn’t change the fact that he tried his absolute hardest during this whole thing. If he told me today he couldn’t do it, I could never have blamed him for that.

So what’s next? Well, all I need to do is book our first appointments (drug teach, consult), and then get our start date. By all accounts, we could be mere weeks away.

Over 4 years of thinking IVF was not in our future, and yet here we are.

Someone pinch me.

More later, this is all so new.

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The One About Body Image

As many women know, body image is one of those things most of us struggle with. Right or wrong, we often wish things about our bodies were different, and our self worth is tied up in what we see in the mirror.

I’ve been thinking about this a bit lately because my 30th birthday is racing up on me. My hair is getting speckled with greys (thanks mum!), I’m getting lines in my face, my body doesn’t look like it used to. 

I know I’m young, but 30 is a big number for me. I didn’t think I’d still be having children in my 30s, let alone still trying to have one. Me turning 30 also means we are at 4 years trying to conceive, nearly 10years married (all of that time, I would have been happy to have started having children). 30 is the decade when “they” start talking about dropping fertility. 

I know I’m still a healthy weight too, but the weight that has crept on thanks to eating my feelings and feeling overwhelmed is a bit upsetting. Because I wouldn’t mind not having a flat stomach if there was a reason. I wouldn’t mind feeling bloated and uncomfortable if my tum looked 4 months pregnant because it was.

I’m finding it really hard to have a good attitude about my body when my thoughts are often taken up with what my body isn’t doing. It’s so hard finding acceptance in a body that lets you down over and over again.

Not only do I feel like I’m fighting my body each month to conceive, I’m also fighting an army of endometriosis that wants to invade my body. Not just my reproductive organs either, although the that is my main concern currently.  For whatever reason my body has decided to fight itself, to create sickness and pain where there is no reason for it. 
How can I love my body when it seeks to destroy my dreams? When it seeks to cause pain and misery? 

How do I even find the energy to put the care into eating well and starting exercise, when I feel like nothing will change? 

Laparoscopy Experience in the NZ public system

I’ve written this post based on notes I took 3 days after my surgery, and now, 8 weeks after and having been given all the information from the procedure/s.

While the process itself is the same, the information I often see regarding surgeries and some other procedures are often from the private system perspective thanks to insurance. I’ve learned that infertility is not for poor people which is a situation I find myself in currently due to some pretty extreme outside forces. Anyway, I thought it would be good to have an account for those using the public health system and looking for experiences.

On the Day:
I went into hospital at 9.30am on the day and was admitted almost immediately. I was given a gown and paper underwear to put on and then sat around for.. around 2hrs. During this time I had blood pressure and heart rate taken, was given panadol and generally just regretted all my life choices which brought me to this place. My blood pressure and heart rate was high which seemed to be a concern, but I feel like I was fairly justified being that someone was about to cut me with a knife.

This was in a shared room within the Day Surgery until. Each cubicle was closed off by curtains, which is good because one person was snotting into the sink, and the other person was waiting for her mum after surgery (when mum turned up, there was a lot of abuse because staff didn’t let her sit in the comfortable chairs in the area for patients waiting to be discharged).

My surgeon came in about 10mins before they took me in  to just reaffirm what the procedure was. Fun fact – my surgeon ended up being the gynae I chose to stop seeing due to his manner, so I was feeling a bit awkward about that! He vaguely recognised me but didn’t stick around. I was surprised to be told they may not do anything! If they looked and decided it was too much work, they would reschedule for another day so the surgery wasn’t too long. I assume this may be to do with having other procedures at the same time and fitting everything in.

I was wheeled to theatre, then in one set of doors while they organised things in the room itself. Here I was given an IV line (successful 2nd attempt, but not sore), and waited around for about 10-15mins. I had a nurse and the anasthesiologst in this area with me, the nurse kindly using such cliched stories and phrases of “I struggled with infertility, but then I just relaxed” and “at least you can get pregnant”.

When they were ready I walked into the room and hopped up on the table where I was covered with a warmed blanket.

Almost immediately they gave me some sort of drug to help with relaxation and the room started moving around a bit. I was still quite anxious but it was like it didn’t fully compute and my body wasn’t responding to my brain signals. The best way I can describe it is that I knew I was anxious but I didn’t care. I didn’t feel trapped by my heavy body not responding. I think they might have put an oxygen mask on me a this point but that is a vague memory and the last thing I can recall.

Post Op
I woke in recovery, and while I felt fairly alert at the time, I don’t remember much now except the nurse telling me they’d call mum and I was on my way to the ward.

Pain wise, I had three lots of panadol that day on the ward (last at 11pm that night), I wasn’t offered any more after that and didn’t feel any need to ask for more. They did ask frequently about pain in case I needed something else so it was purely preference for me.

I first got up about 8.30pm that evening (about 5hrs after getting to the ward), and I did get the shoulder pain that is talked about a lot. It felt like a cramp in my shoulders and was probably the most painful part, but still a lot less than I was expecting. I only had this pain when standing so it was quickly relieved on lying back down. It lasted about 1-2 days.

I was hoping to go home that same day, and pain-wise I would have been fine, but I had quite low blood pressure and I was being given fluid via an IV until quite late that night.

As far as tiredness went, I didn’t get to sleep again until about midnight that night. I then woke up about 4am and was awake until I was at home that afternoon when I had a little nap. I didn’t feel particularly tired or wiped out, and the noises of being somewhere unfamiliar, plus a shared room with an extra visitor who had to be forced out at midnight and was back at 6am made for not a relaxing atmosphere! I’m sure a private room would be an upside to being in a private hospital!

The next day I couldn’t wait to leave, but it was definitely a slow process! I had to pee 3 times after catheter removal, so I drink a copious amount of water to make that happen as quickly as possible. I then sat and waited for about 2 hours while nobody did my paperwork, and in the end (after chasing them up), was discharged without it. It was supposed to be sent out along with a follow up appointment, but that never arrived.

I walked down 3 flights of stairs carrying my things and jumped in the car, ready to escape! I don’t like elevators much so skipped that, and had no problem being on my feet.

Recovery
Mild pain when changing positions for about a week.

I had a “jiggly” tum for a wee bit, like my muscles forgot how to hold everything in place. This only happened when I was moving faster (like quicky crossing the road!)

Bleeding – light for about 2 days.

After about a week I felt fairly normal, by 2 weeks I was completely back to normal.

Incisions had dissolving stitches – I have 4. The lowest one was about 3cm, the ones on each side about 1cm, and the belly button was mostly invisible as it’s in a crease. The belly button one was the only one I ever felt with a pulling sensation sometimes. Any pain was more muscular feeling.

Something I didn’t know about until it happened – first period afterwards was awful! I nearly cried from the cramps, even with pain killers. I tend to take them too late, so make sure you’re on the ball about taking them before the pain kicks in too much.

Results:
I’ve just had my follow up appointment and was surprised to find I had “severe” endometriosis. I knew they had removed some but not the extent of it. This would also explain being in surgery for about double the time expected. Being that I had no over the top pain I assumed it was a little, and I think I probably have a higher pain threshold which can make my assessment of pain inaccurate.

Something that has been mentioned and was in my surgery notes was “almost certainly adenomyosis”. I remember reading Robert Winston’s The Essential Fertility Guide and thinking that I hoped I was never diagnosed with that. It’s harder to diagnose as it needs to be done via biopsy (and they often don’t know *where* to biopsy), but regardless, there is little that can be done to treat it apart from hysterectomy.

I haven’t looked into it much, but I know it lowers the chance of pregnancy and heightens the chance of pregnancy problems like premature labour. It’s something that is playing on my mind but doesn’t really change my reality, which is that I hope my body can play ball, but it has to decide that on its own.

I can’t share any experiences with hysteroscopy or the dye test because I was asleep, so I can only recommend that having them while asleep is excellent 😉  But these both also came back with no problems.

A year is what I’ve been told, the timeframe of what I guess is typical before endometriosis takes over again for many. A year doesn’t seem very long when we’ve been at this multiple of years.

The Doctor was excited, spouting feel-good phrases about “good chances” and being “very optimistic”. I’m happy it’s been done and I’ve turned this stone over, but I also heard this speech 2 years ago when I started clomid. I’m realistic. We have a timeframe.

This is the best chance we’ve got.