Osteo treatment and a warm mug of tea

Constipation diarrhoea. What? That’s an oxymoron!!! Except that it isn’t if you have untreatable Endometriosis on your bowel. When you are having a flare, your bowel becomes so inflamed that you can’t shit. Joyous. Throw into that mix that sometimes the inflammation or the associated treating medications, or in my case “Anxiety Guts” gives you the squirts. Thus the term Constipation Diarrhoea is born. Sitting there with your butt hole going through all the contractions etc of having the runs but nothing coming out. It’s torture. It actually makes me cry. And usually if your bowel is playing up your bladder with de ide it wants to as well. So add in that it feels like a steel rod has been jammed up my pee hole whilst only tiny bits of wee can come out- because urine retention is FUN. But hey, at least my uterus is gone and doesn’t hurt as well.

 

Please dont take having a poo for granted. It’s bliss for some of us.

 

 

X -A

Raspberry leaf tea and vitamin D

In less than 1 week I will be 6 months post hyster. And to be honest, I have only just started feeling good. Good enough to seek out more work and return to the gym. I’ve gained 8kg in those 6 months and if I’m honest, it’s been through mild depression, laziness and poor diet. But out of the blue I have found motivation again. Unfortunately, my pain has returned and my sex drive died. The pain isn’t constant like it was, the bloating isn’t crippling. But I have “uterine” pains every few days. I’m taking simple pain mess regularly again. Sex hurts again. And yet… I don’t feel as darkened about it as I expected. Do I find comfort in the pain I had for so long? Or is the remnants of my Endo spreading? I don’t feel like going through everything again. I have my Complex Cyst follow up in a weeks time, and I know that has resolved, I can feel it. But I really can’t be stuffed with all the scans and appointments and tests all over again. I know any pain isn’t normal, but it’s not constant and it’s mild… like I check the toilet paper expecting my period- it’s that kind and level of soreness. So, I don’t know?

Sweet potato and broccoli

"Why don't you just have IVF?"
That question…. it makes me mad. For 2 reasons. Just having IVF is not something to down play. It shouldn't be tossed around like 'why don't we just have a latte'. There is so much emotional and financial commitment for IVF. It's not something you just have.

Also, if you don't have a healthy uterus then there is no point. And I didn't have a healthy uterus.

A more appropriate way to enquire would be "would IVF be of any benefit?"

I was asked prior to my hyster if I had considered IVF since I have issues having babies. I answered that of course I had but I wasn't suited for it as I was riddled with disease. The follow up question was "what about surrogacy?" People throw these terms and suggestions around like they are nothing. Often these people get pregnant on the first try. There is no way to understand the emotional depth required in these decisions, so I beg of people, please don't ask these questions in such a fly away manner. Ask away about our infertility. We are usually more than happy to discuss it. But think about WHAT you are actually asking.

x A.

Avoid cleaning products!

Fake pregnancy announcements are not funny. 

Especially if you’ve never had to take drugs and give yourself injections to make you ovulate. Or have your partner jizz in a cup for analysis even though you know the issue is you. Definitely not funny if you’ve never had to have 3 scans and 3 blood tests a week to see if you’ve ovulated, or if you’ve never cried from the pain of sex. It’s especially not funny when you’ve been through Hell to get that positive, only to start bleeding later and pass a clump into the toilet that you know in your heart was your desperately desired baby. A baby you’d tried to have for years. 

Fake pregnancy announcements are not funny. 

Powdered greens and give up gluten

Today I’m sitting in my car crying. Today isn’t fun. 

I had some bloods done this morning. Hormone work- in part to see about PCOS and in part because it should be done 3 months post hysterectomy. The conversation went as follows: 

Pathology lady “oh we are testing all the hormones ” 

Me “yep no hormone will be spared” 

Her “are these for pregnancy?” 

Me “no post hysterectomy and query PCOS” 

Her “oh you’re so young ” 

Thanks Captain Obvious. I’m aware. So then onto the scan. The ladies at that place know me on a first name basis. The technician said “you know where the gown is, you know the drill”. These ladies at Clearview Radiology are some of the nicest health professionals I deal with.  

So I asked if the transvaginal ultrasound should hurt- it never used to but it did today. I thought maybe it was scar tissue. Except the pain was deferred. I was feeling it in my anus. She said it shouldn’t hurt she’s barely pressing on anything. She asked if she could go harder and I said no. Then she informed me that she really needed to as she couldn’t find my ovary. Was I sure I still have it? Yes I’m absolutely sure. I agreed to let her push harder. I gagged and started crying. She still couldn’t find it. I have never had any issues with pain like this before and I have had them use the stick to test the mobility of my ovaries. She stopped at this point. Stated perhaps Endo was causing my pain, perhaps the ovary was behind my bowel…. either case she can’t keep going and perhaps I need to be referred back to the specialist. 

And so here I am, back to basically where I started. Back to needing specialist opinions. More tests. Querying if my ovary should be removed. So I’m allowing myself to cry in my car while my anus throbs. Because fuck fuck fucking fuck. 

x A. 

Magnesium oil in the shower as a vaporizer

I had an appointment with my GP last week, as my energy levels have been rather poor and I have been quite tired. I was trying to explain to her that it is a different type of tiredness. It’s not bone achingly exhausted, takes effort to hold my head up type. But it’s still tiredness nonetheless.

It got me reflecting on what actually has changed for me since my hysterectomy. Has it been worth it? Definitely. Am I ‘better’? No. There is no cure for Endometriosis, and I think sometimes both myself and my husband forget that. Endometriosis is a curse – there is no cure, nor is there any respite.  It tortures you physically and mentally.  It controlled my every move, crushed my dreams and dictated my life.

I used to be too scared to admit how I felt, when people asked; I had been on a conveyor belt of treatments and surgeries, and I felt like saying I feel like shit all the time made me look like a Negative Nancy. I think people also underestimate the emotion behind making the ultimate sacrifice in a desperate bid to have a shot at being well- the definitive decision on my future, my body and whether or not there would be more babies. It wasn’t a straight up and down decision. It was the hardest of my life.

But, the hysterectomy was the right decision. I do feel mostly better. I can work a little longer and enjoy going out now (anxiety permitting). I don’t need to be as picky regarding the choices of food or alcohol, as I no longer get so bloated I can’t breathe. The recovery has been longer and different that I expected, but heck, it has been worth it! 

Maybe if you distract yourself…

I hear a lot of “Oh but you’re so young!!”

Oh yes. I definitely am so young. Apparently I was too young to need fertility treatment- but I did. And apparently I’m too young to have a 7 year old- but there he is. And my favourite is I’m too young to have needed a hysterectomy. And yet my uterus gave zero shits about what people thought in regards to my age. All my uterus cared about was making it hard for me to walk, making me vomit and faint and trying hard to eject my tiny little fetuses.

It is bloody hard to get people to take you seriously when you are presenting to them with infertility at 22. Their advice is often to relax, wait a few years, you have plenty of time etc. Except, I didn’t have plenty of time. My clock was ticking. I knew I’d need a hyster at about 30. I was blessed to meet my husband in high school. I was also fortunate that for the majority of my working career I had been working with Obstetricians/ Gynaecologists. So, when standard GPs, herbalists and the like weren’t listening to me, I knew exactly where to turn to get the big guns to act.

I have some advice re young infertility. Be persistent. Do not accept the wait and see mentality. Insist on bloods, insist on scans, insist on referrals to actual specialists. Infertility is not something reserved for women in their 30s+. It is real and just as devastating in your early, mid and late twenties. In my case probably even my teens. Also, once you’ve had one pregnancy (viable or not) the term becomes sub-fertility- as you are technically fertile since you made a baby, you just are struggling to make another.

 

x A.

A juice cleanse will do you good!

One day, in February, a lovely doctor looked at me and said “We have tried a lot of things- how about we ‘can’ your uterus?” Her cute way of telling me that the only way to improve my quality of life was to remove an internal organ. That is a huge deal. You have to be pretty unwell, right? Well, it seems there are mixed thoughts on that.So, I give you the top 5 things NOT to say to someone young having a hysterectomy. And a few things to say to be supportive.

5. “At least you will have an excuse to lay in bed for a few weeks! I’d kill for that!!” Oh yeah, it was fantastic to be bedridden with a 4 year old and a 6 year old. And even with Foxtel and Netflix, I still was bored shitless by day 5. And come to think of it, you’d kill to lay in bed? I’d kill to have the chance for another baby!

4. “Well, you were done having kids weren’t you?” Yes, I was- but this wasn’t by choice. This was by medical advice…. My Ob sitting on the end of the bed after the second one and saying “Please. No more babies”. It’s more in depth than that, but that ACTUALLY happened.

3. “You won’t know yourself afterwards!!” Oh, you know this for a fact? You know that everything will be amazing? Because I feel much the same.

2. “So that will fix everything yeah?” This one is tricky. It’s a lovely thought, and people wanting to understand. But the thing with Endo is that there is no cure. Hysterectomy just prevents further spreading- but what is spread is spread and not a lot can be done about it. It can’t be removed from my bladder and bowel.

1. “Oh, but you’re so young!” Yep, yep I am. I am in my prime of fertility apparently. Wombless, cervixless and growing a crop of chin hairs.

But it isn’t all doom and gloom, I promise. I mean, except for the days I should be getting a visit from Aunty Flo…. Because I still PMS like a mofo, thanks for my remaining ovary…. *sigh*

 

x A.

Put some Coconut Oil on it!

“Endometriosis? Oh yeah my *insert random friend, relative, workmate, cat* had that but it went away”

“Endome-what never heard of it! ….. Oh it’s a uterine disease? Oh” *awkward silence*

“Well at least you managed to have kids, that’s a bonus, and apparently having kids cures it!!”

“What do you mean you have an IUD as well as being on the pill?”

“Have you tried Turmeric?”

Anyone with Endo would have heard all of these and more. Daily most likely. And whilst it is nice that people care enough to want to discuss it with you, it gets a bit tedious listening to the same miracle cure or random advice stories when in fact there is no cure. In fact, the amazing Turmeric craze is detrimental to women with uterine diseases as it increases bleeding which is that last thing we need with Endometriosis!! It even says so in those information handouts that the pharmacist gives you.

Now, don’t get me wrong, this isn’t everyone’s Endo experience, my case is pretty extreme, and I’m lucky enough to have the trifecta of Poly Cystic Ovaries and Adenomyosis as well. What are those? Well in normal speak:

• Endometriosis- the lining that gets shed and bleeds out during your period goes rouge and ends up in other places. So when you bleed since there is no way out for the blood etc from the rogue tissue, you end up bleeding internally and it’s a vicious cycle.
• Poly cystic ovaries- heinous cysts on the ovaries which affect hormones, weight, the ability to ovulate.
• Adenomyosis- the ugly stepsister of Endo. Except the tissue doesn’t go AWOL. It gets caught in the layers of muscle of the uterus. It hurts ALL THE TIME. It makes you spot a lot. It makes the chances of a viabile pregnany lower and it makes labour harder.

So, in hopes of trying to manage the 3 I had a hysterectomy. To date, the only thing achieved by removing my uterus was the cure of the Adeno- which is literally contained only to the uterus. So…. Yay?

This little intro only briefly touched on what I plan to blog about- but am happy to write about topics as suggested by readers. Feel free to get in touch and ask me to cover a topic related to Women’s Health that you’d like to know about, or to help you realise that you aren’t along.

 

x A.