Endometriosis - as my story unfolds

Endometriosis - as my story unfolds My name is Jenny, I'm 31 years old. The good, the bad and the ugly truth
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I have decided to write about my journey since i ended up in hospital, having surgery and being diagnosed with endometriosis.

02/03/2025

💕1st March 2025💕 - recent news 💕

Where do I start?! Over the last few months, since my periods decided to vanish for 3 months, and then return with a big Endo flare up, I’ve been back and forward to the doctors having lots of blood work done.
On Wednesday I got the news I didn’t want, but over the last few days I have started to accept and get my head around it, so I can now write about it, and share my latest update.

🫶🏻History - After all the intensive surgery I’ve had, due to my Stage 4 endometriosis, especially on my ovaries. I’ve had cysts burst resulting in having to have drains in place, and then being told I had to have my ovaries removed. But after my surgery they managed to save my ovaries, as they removed all the endo from them. Meaning they were safe and still functioning! 🫶🏻

Roll forward to today, and it’s official my ovaries have started to fail! I have premature ovarian failure, which is equivalent to early/premature menopause! This is not the news I expected 3 years after my surgery of saving them. And definitely not at the age of 36. But here we are! 😫

My emotions, mental health, weight, sleep and migraines have been all over the place these last few months, and I am glad I finally have answers as to why! Not the answers I wanted, but having answers is always helpful.

So this week I have been started on HRT patches, and progesterone tablets!

Twice a week I have apply the patches, and on a two week basis I have to take the tablets, then a two week break & repeat until I reach approximately 50 years old 😣
However due to my age, and the length of time until I am 50, this puts me at a high risk of Breast Cancer & Strokes! So the GP has suggested I have the Mirena coil, instead of the tablets as this will be easier on my body, and lower my risks! So I am booked in to have my coil fitted this month! 🫣

They have started me on 50 HRT with a view to be on a higher dose if/when required!

So today, I have just applied my 2nd patch, and the only ‘symptom’ I am suffering with is nausea. But can take up to 4 months before my body gets used to it, and I start seeing differences with my lifestyle struggles.

We will see how it goes! I have a HRT review in 3 months time!

💊*HRT medication in England, isn’t free on the NHS. And with the cost of prescriptions, it can work out very expensive. There is the NHS pre payment exemption which is approx £10 a month for any amount of prescriptions you require. However, in case nobody knew (as I didn’t) there is a special exemption you can get for HRT medication.. which is less then £20 for a whole year of HRT medication.* 💊

Lots of love 💕

19/12/2024

🎄16th December 2024 🎄 - a flare up.

On Monday, I woke up to extreme pain across my stomach, full on (what can only be explained as) contractions.
I was absolutely sobbing, not only becosse of the pain, but the pure fear It would result me being back in hospital 😫
All the memories I have put to the back my mind these last few years, came flooding back.
The ‘contractions’ lasted a few hours, but then localised in my right side. My stomach had swollen to the size of being 6months pregnant too. A typical Endo Belly, and Endo flare up!
Period had been absent for 91days, but on Tuesday it was back, and to say HEAVY, is an understatement. And the pains remained for 3 days but gradually became ‘period related cramps’ which as bad as they are, was a dream compared to Monday.

This just shows, when you’ve been diagnosed with Endo, whether it be stage 1 or 4, it’s just a ticking time bomb for your next flare up.
There is no cure!
Having surgeons inside your body, detaching your organs from other organs, tearing them in the process, having foreign bodies put inside your body to help with healing the damage, and now knowing it’s all back again, to what extent I don’t know.

Blood tests tomorrow 🤞 for a full MOT.

Here’s to all my we stand together!

🎄🎄🎄

02/12/2024

December 2024 - a little update of 2024

It’s been a while since I last updated this page, as things have seemed to be ok.
Endometriosis wise they have… or I thought they had.
Over the last 18months, it’s been a bit of rollercoaster health wise.
After deciding I would have the coil removed 18months ago, to attempt a last chance to have another baby. At the beginning of ‘trying to conceive’ I visited the GP to have full health check and bloods to see my chances of fertility.
They all came back ok, except my prolactin levels were very high. After going through my more tests, and an MRI scan of my brain, to check my prolactin gland, turns out I now have Empty Sella! Which has made my prolactin levels high, meaning harder to conceive but not technically impossible.

Fast forward 18months, (today) I’ve been back to the GP as my periods have completely vanished. 79days to be exact.
Negative for pregnancy, but extremely tired, brain fog, and just generally feeling s**t all the time. GP thinks it’s possible I have POI ( Premature ovarian insufficiency) which is a result of the stage 4 endometriosis and the damage and in-depth surgery I had on my ovaries, plus the zoladex (artificial menopause injections)😭

I now I have lots of blood tests to be done this month to get a definite answer but she is almost certain this is the reason. And if it is I’ll need to start a high dose of HRT asap to prevent osteoporosis as I’m only 36.
Looks like a new baby was never meant to be. 😭 but I am forever grateful for the two babies I got to have all those years ago before Endometriosis ruled my life choices.

Obviously I’ll keep my page updated when I can, but I try not to focus on the Endo anymore, and I try to live the life I’ve been given to the full. But deep down I know it’s always there in the background, and I am reminded often of the damage it has had on my body.

To those who are still fighting for their diagnosis, keep fighting! You know your body!

Don’t let anyone tell you it’s just a period!

As you all know mine was silent but extremely violent!

Lots of love
❤️

11/03/2023

🌸 March 2023 - one year later 🌸

Over a year now, and never felt better.
Clear of endo, and no endo symptoms.

I’m not naive I know it’ll come back, and the chances of symptoms returning is quite high.
And the chance of more surgery is likely too.

But one whole year, living my life and not having to put it on hold because I never knew when I would have my next flare up.

We have our holiday booked for august this year, which we couldn’t do before, as I was terrified I’d end up in a foreign hospital.

The coil has settled in too, and don’t even know I have it now. Bleeding is extremely minimal when it comes too.

Here’s to a year of being clear of Endo

💕💕💕💕💕💕💕💕💕💕💕💕

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Saffron Walden

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