Endo Diaries

16/03/2024

Sorry I've not posted in a while. I all of a sudden felt very vulnerable posting here. As well as emotions being very up and down lately.

But in a nutshell I'm feeling much better. Even managed a small trip out on the bike 😇 I'm only getting to the gym once or twice a week as it still completely wipes me out. I'm struggling with dropping any weight even though I have been eating healthier than I ever have 😒 and reaching 10k steps daily.
More hospital appointments and tests coming up which I will share with you soon.

I hope all you endo ladies are doing well? What are your updates?


Xx

21/12/2023

It only took a year to undo everything! After a rough couple of years, 2 surgeries and a shed load of hormones I'm back to square 1 with my weight 🥲 such is life! I'm still go to make the best of Christmas 🐖 🧑‍🎄

Merry Christmas from me x

❤️

09/12/2023

Thank you for my goody bag

A little self care is definitely needed after a week of hell

❤️

03/12/2023

It's been a very emotional few days for me.
Poor Alex doesn't know if he's coming or going with me 🥺

It started with a bad couple of days at work. Then I hit a massive pothole that has caused damage to my car. The house is upside down due to trying to decorate. Feeling frustrated with general life situations. And of course, aunt flo came, which has definitely thrown my hormones out of whack!

Life just seems to be hating on me, and I'm tired.

But most of all, I miss my Trig boy. He would have been 15 yesterday 🎂 and we are still going through the 'first' of everything since he went over the rainbow bridge.
It's hitting me a lot harder than I thought it would, and I feel terribly lonely without him. Trigger literally went through EVERY sh*tty thing that happened to me, and he never left my side. No matter how I felt or what I was going through, he was always so happy to see me and gave me endless cuddles and love ❤️

It's been just over 10 months since he grew his wings, and my heart still hurts. I think of him every day and still cry for him.
I love that boy so much.

I miss you Trig

Xx

30/11/2023

Aunt flo has entered the building!⚡️🔥💊🩸🥺🤕

She checked in yesterday while I was having mare of a day at work 🥲

It's was exactly 8 weeks and 5 days since my last zoladex implant, and I am now officially out of menopause 🥳 although realisation has hit that I will have to go through that again later on in life 🥲 yippee!

Obviously the cramps are there, but the nausea and pains in my legs are something else 🤢
I can honestly say I haven't missed this pain one bit!

20/11/2023

VITAMIN UPDATE

As of tomorrow, it will be 2 weeks since I started my vitamin and mineral plan, so I thought I would share what I have noticed so far . . .

1) The biggest difference is my cravings for bad food . . . I feel my hunger is more controlled now. I'm not rushing home and raiding the cupboards like I was before. And I am no longer binge eating 🥳 I even opened a packet of biscuits yesterday and only had 1 biscuit, which I was satisfied with. 1! Normally I finish at least half a pack and only stop then because of guilt! 😀

2) I'm pooping for England 💩
Morning. Noon. And night. This has been pretty much since the day I started the extra vitamins 😂 I feel like my body is having alot to catch up with, since I've suffered the other extreme since my teens, and was lucky if I went once or twice a week!

3) Since I started taking these, I have had the most horrible nightmares nearly every night 😭

4) Alex has tested positive for covid today 🤒 🤧he's been feeling rotten since Saturday 🥺
I've had no symptoms so far 🤞 are the vitamins improving my defence system? Maybe.

Are the vitamins making my eggs grow big and strong?
I hope so! (But still no aunt flo 🙄)

However, my hair is still falling out a crazy amount. And I am still so bloated . . .

If anyone has any suggestions on how to help these 2 issues, I would love to hear them ⤵️

***yhealth

13/11/2023

It's been exactly 6 weeks since surgery. I am still swollen, but as of last week I felt an overall improvement pain wise.

So today i thought I would start off with 10k daily steps, before trying any exercise, hopefully in a couple of weeks.

It was slow. But it's done 🥳

I'm not sure if it's the increase in steps, or if Aunt flo may be on her way, but I'm feeling crampy 🥲

On one hand it would be nice to know everything is working and the zoladex is leaving my system. But on the other, it's been so long, I feel like my next period is going to kick my arse 😬

12/11/2023

May we never forget what all those brave men and women sacrificed for us ❤️

11/11/2023

🤦‍♀️ please go away!

10/11/2023

Aaaaand we've reached Friday!

First 3 days back at work done ✔️
Weekend is here 🥳

Instead of 'rewarding' myself with a tasty alcoholic beverage, I am cooking some nice food, taking all the vitamins, and resting up so I can enjoy the weekend.

I will get these eggs in tip-top condition in no time 😃

Happy Friday ❤️

29/10/2023

Even after running a half marathon, he is still by my side. Cold tired and hungry, he waited with me at the hospital for 4 hours, while the doctors ran tests to try to figure out why i have new pains which have appeared in my back and chest, or why my stomach has swollen this much 😭

All tests came back fine. No infection found, and kidneys are in working order, but they can't explain why this is happening 😪

They've told me that although they wouldn't expect this after my surgery, they are not worried.

But I feel the swelling/bloatness is getting bigger every day, and I absolutely hate how I look right now 💔

27/10/2023

We are so close to reaching £600 for world endometriosis research 🤩

And just 2 more days until my wonderful husband runs a half marathon in aid to raise awareness. Alex has never been a runner and has only has 10 weeks of training, so it will certainly be a challenge. But i have absolutely no doubt he will smash it!

If you are in a position to, please donate to this wonderful charity, who's goals are to help build a future where no woman is crippled by endometriosis and suffers infertility.

Sadly endometriosis affects around 1 out of 10 women 😔

Every penny really will help!

❤️

Help Alex O'Neill raise money to support World Endometriosis Research Foundation (WERF)

26/10/2023

This came yesterday, and I can not put it down!

I am only 55 pages in and have learned so much already. It's so easy to follow and understand.

I am gobsmacked at the amount of toxins I know I have in my home (even without looking) that I never linked to the fertility health. And some of it, I feel stupid for not realising myself.
Such as - I use BPA free bottles. But I also reuse plastic takeaway boxes to store food, and even worse, to heat up in the microwave!!! This creates a playground for BPA and phthalates.

I will be having a rethink about my home environment regarding my plug-in air fresheners, perfumes, nail polish, cosmetics, cleaning products, and laundry detergents.

I'm not saying I will change everything. I certainly don't have the money to spend on replacing everything I currently have.
But by making small changes now and adding more later on once certain products run out, I hope to dramatically reduce our exposure to these toxins. Which in return, I hope will improve my egg quality.
Also, exposure to these during pregnancy may compromise infant brain development and increase the risk of preterm birth!

I wonder what else I will learn in the 250 or so pages left 🤩

25/10/2023

Post surgery day 9 vs. day 16 😭

I've never felt so deflated . . . The dreaded endo bloat is back already!
I knew I wouldn't be free of it, but I really didn't expect it soon 😣 pain levels are pretty average for me at the moment, but I wouldn't say I have the typical flare up pain, so whyyyyyyyyyy 😡

24/10/2023

Food . . . I love it! And I hate the thought of diets when it gives me so much joy! So I wanted to share with you a breakfast I love, which I choose to help with my endometriosis symptoms. By no means am I perfect all day . . . But ya know, baby steps!

YAKAULT - contains 20 billion friendly L.Caseo shirota bacteria, which helps maintain good gut health and contributes to preventing constipation. (one of my biggest symptoms 🙄).
And it's also gluten free!

OATIBIX - 100% wholegrain oats. High in oat fibre for a healthy gut. Contains beta glucan, which lowers cholesterol. Also, it contains folic acid, vit B1 & B2.
Low in sugar & salt 🥳

ALMOND MILK - Dairy products can cause inflammation through hormones, which worsens endometreosis (although I'm struggling to say goodbye to cheese 🥹). Anyway, this milk is low in sugar, 100% plant based, and is a source of calcium, vit D, E, B12 & B2!

HONEY - Sugar blocks your production of anti-inflammatory prostaglandin, actively encouraging the inflammatory nature of endometreosis. So I've used honey for a sweet taste. Honeys' advantages over sugar include a slightly lower glycemic index, which means it doesn't affect your blood sugar levels as much. It also contains vitamins, minerals, and antioxidants 🐝

HERBAL TEA - I've ditched my morning coffee for this tasty little number. Today, I've picked the detox from the Twinnings superblends range. This one contains selenium, which contributes to the protection of cells from oxidative stress 🫖

COD LIVER OIL - As well as all the other good we know this little gem for, fish oil rich in omega 3 fatty acids, also reduces dysmenorrhoea & inflammation in endometreosis!

NAPROXEN - This is my prescribed medication, which I taken in the morning and night. It's an inflammatory pain killer that helps me get through most days. However, this can be harsh on the stomach lining, and do not plan to be on this long term!

Happy Tuesday, peace out ✌️

22/10/2023

Exactly 1 week until Alex runs a half marathon to raise money for endometriosis!

Please donate anything you can and most importantly, please share!

The charity World Endometriosis Research Foundation (WERF) has the following goals which any money raised will go towards:

- A day where no woman is crippled by endometriosis or unable to have children due to the disease.

- A day where endometriosis can be prevented.

Much love from Mr & Mrs O ❤️

Help Alex O'Neill raise money to support World Endometriosis Research Foundation (WERF)

22/10/2023

Post urgery blues have hit 🎻

It's been what feels like a stressful week, and I feel like I've taken a setback in recovery. I'm asleep more than I am awake. My whole body aches, and I have a constant period pain like sensation. I'm fed up with not being able to clean my house or go for a walk. And I need to go back to work to pay bills 😭 everything is sooooo FRUSTRATING 🤬

But our Rosie comes home today, so that's something positive 🐶

18/10/2023

Before vs. after surgery!

Although my weight has actually gone up, again 🙄 and I still have endo pain, I am definitely more comfortable now the cysts have been removed. It was getting to the point that I could feel the cysts if I was twisting to look behind me in the car, or painting my toenails.

Good riddance Freddy & Freda!
(Yes, we named the cysts 😅)

16/10/2023

Surgery update -

I had a frozen pelvis with endometriomas measuring 7cm on the right and 5cm on the left, which were stuck to each other as well as my pelvic side walls, pouch of Douglas and sigmoid. The cysts were dissected free, opened, drained, and stripped

My right o***y is badly damaged, and little normal ovarian tissue remains.
It was not attempted to excise the deep endometriosis in my pouch of Douglas.

Both fallopian tubes show evidence of adhesions and a degree of oedema, but otherwise not intrinsically abnormal.

Bladder and womb investigated. Adenomyosis present but no other findings.

Side note- 2 of the things I was most worried about came to nothing!
1) the e***a was the easiest part of the whole thing.
2) the uretha stents were removed in theatre, so I don't need them removed in 6 weeks 🥳

Summary - we have very little chance of a natural conception, but not impossible. However, we have been advised to go for private IVF as soon as possible due to the 'many hoops' to jump through on NHS.

It's a lot to take in, and we certainly don't have a money tree. Otherwise, we would have booked that IVF appointment straight away!
We are taking time to process, but we are finally getting answers, so that is a big hurdle!

Although I will never be pain-free, I am feeling hopefully for our future.

We have a plan for whichever path we end up on, and they all look pretty awesome 🤞

15/10/2023

Sorry I haven't posted an update or replied to messages as yet. I'm having one of 'those' days today. Getting into bad sleeping habits - late nights, and laying in, reduced showers, not being able to get out of pj's, trying to keep rested but feeling restless, continuous pain/niggles, along with everyday life woes, it has taken its toll mentally.

It shows how important routine and structure really is. If we don't keep our mental health in check, nothing else will tick along as it should.

Tomorrow I'm washing my hair and getting dressed. Even if that's all I do!

Happy Sunday ❤️

09/10/2023

Oooo new handbag!

This little gadget is an intra-abdominal drain. It drains all the excess endometrioma blood and surgery fluid via a tube inserted into my tummy.
Cool huh!

Today has been tough to say the least . . . Alot of pain and extreme nausea!

While on zoladex, I have been lucky enough to feel a significant improvement pain wise. But today, I feel it's hit me all at once 😰
I have stomach cramps which feel similar to a stomach bug pains, and I feel as if someone is shoving a hot poker up my butt and electrocuting my ovaries at the same time 😫
Along with the gas pain which feels like I have broken ribs, I truly feel like I've been hit by a bus.

But I have everything crossed 🤞 I can go home tomorrow!

I miss my Alex. And I miss my Rosie 🥺

I will update you on how everything went, once I can think more clearly.

Thank you all so much for all your kind messages and well wishes ❤️

08/10/2023

Well, that's me all packed and ready to leave at 5:30am tomorrow!

Dressing gown and slippers ✅️
Baggy day clothes and pyjamas ✅️
Toiletries including sanitary pads and Bath towel ✅️
Medication and peppermint tea ✅️
Crossword book and kindle ✅️
Phone charger ✅️
Hair tie ✅️

I'm feeling very anxious this time round.
I'm scared of needing to have the uretha stents in after the operation, which means having them taken out at a later date . . . while I'm awake 🤢
I'm anxious about having a colon irrigation (could be funny or could be absolutely mortifying 😅)

More than anything, Im petrified of the outcome . . .

Thank you to everyone who has sent me a message today wishing me well. It has helped me so much today, and I really truly appreciate it

❤️

05/10/2023

And just like that, once we said f**ck it to everything, we got a date!

On Monday I will be checking in at 6:30am for surgery 🫠
So relieved to finally get a date and thankful it is only in a few days time.

I feel absolutely petrified this time round, and I'm not sure why?
Strangely, last time when we were told I had the 'C' word, I think I accepted my fate and remember feeling like I'm not going to waste time worrying.

This time, I am doing ALL the worrying 😧

Happy Thursday ✌️

04/10/2023

This man grounds me 🥰

I have felt so stressed today with still not having a surgery date (one of the surgeons could not attend the meeting, so a date has still not been decided as yet!).

Sometimes, you just need to be out of the house. No TV. And no signal! And wine 🤌
We've decided if things don't go our way and we are meant to be a pack of 2, we are packing up and going travelling!

🖕 to endometriosis!

03/10/2023

Patiently waiting for a call from the hospital . . . The MDT meeting is today, to decide on a date when the endometreosis surgeon, bladder surgeon, and bowel surgeon all have the same date free for me!

I'm trying not to get my hopes up as the last meeting was cancelled due to strikes, but it's all I think about at the moment 😵‍💫

30/09/2023

The symptoms of endometriosis can vary.
Some women may have little to no symptoms with stage four, whereas so women can have severe symptoms with stage one.

Or you might have debilitating pain one day, and be completely fine the next.

Some days I'm doing cartwheels and zipping here, there and everywhere.
And some days I struggle to make it out of bed. Walk. Or even stand up straight.

There really is no pattern to it!

29/09/2023

This time next month Alex will be doing his half marathon to raise funds for endometriosis research ❤️

Please donate if you can and don't forget to share!

Help Alex O'Neill raise money to support World Endometriosis Research Foundation (WERF)

28/09/2023

Zoladex implant number 6 . . .

6 months period free has been utter bliss!
I have just started getting mild endo pain more frequently, but it hasn't stopped me from doing my day to day things and is nowhere near what It was. Although I am very much aware of the cyst inside . . . I can feel it when I bend a certain way, and I have a horrible feeling of pressure in my lower abdomen.

Mood is still settling, but I'm putting that down to the anxiety of, dare I say it - hopefully next weeks news 🤞

I'm still balding and getting fatter.

Other than that, things are OK.

How are all my zoladex girls getting on?

staffi

23/09/2023

Some exciting news regarding provisional surgery dates 🤞 hopefully the MDT meeting goes ahead in October so I can get my paws on that definite date!

23/09/2023

Just something I had to share 🤩
Happy Saturday!