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

💕💕💕💕💕💕💕💕💕💕💕💕

💜12th April 2022- Stent Removal Day 💜I want to start this off by saying… THAT WAS AN EXPERIENCE!! So firstly I had to ha...
12/04/2022

💜12th April 2022- Stent Removal Day 💜

I want to start this off by saying… THAT WAS AN EXPERIENCE!!

So firstly I had to have my urine tested at the doctors, along with my coil strings, 5 days before my stents were due to be removed.
It turns out I had an infection, so I was on antibiotics for 3 days. And my coil is doing just fine.

So today, I had to wake up early. As I needed a early morning wee sample. And then my appointment was at 2.40pm this afternoon.

My appointment letter states, step by step idiot guide to how the day will plan out.
Blood pressure, urine dip, temperature blah blah… then into ward where I’ll be given a hospital gown and shown to a bed. Then the procedure will take place. I will be numbed and stents removed, then I won’t be able to leave until I have passed the fluid.

Okay, fab I knew exactly what to expect!!

Haha… how wrong!!

I arrived at the endoscopy clinic, earlier then my appointment. I booked in, took a seat in the waiting room. With in minutes I was called by a male nurse; to have my blood pressure checked; and temperature and have my little pot of p*e dipped and tested. … perfect as expected. He then gave me another put and said I needed to p*e again; as this one needs to be sent off. But there is no longer any infection just still blood in my urine, which has Become a normal thing the last 7 weeks.

Any he said all was okay, and I was taken to sit on the next room; and he said I’ll be called in soon. Again within minutes; I was called in. 2 male specialists, introduced themselves. They explained they had no notes on me, and I hadn’t been seen in their department before… absolutely correct! However he should have my notes, I have my notes. So I told him everything that has happened and the reason I am here. He looked at me very blankly.

He said, okay I’ll go by the small info I have, and we’ll continue to have a look at your kidneys and bladder with the camera….

Erm…. AND REMOVE MY STENTS… right??!

“No, we can’t remove your stents, that’s not our job. There is a special clinic who take the stents out, and this isn’t an appointment for that” “I am trained to removed stents I’ve done many before, but we don’t do this any more plus we don’t have the equipment here”

As you can imagine I was devastated. Even my eyes welled up. I tried everything, can you not call the surgeons or the nurse or Catherine who is head of it all. I’m suppose to have my stents out today, 6weeks after and today is 7.

A voice from behind the scene, was female.
“We do have the equipment in the cupboard”

“ do we?, go and get it and I’ll have a look”

She disappeared and came back with a sterile wrapped a4 size tray, with instruments inside it. He took a look, and said yep that’s the one. I guess we can remove them if you want us to.

As nervous as I was, and the feeling of ‘am I actually agreeing to some back alley procedure right now’ I said YES! I need them out.

So he produced the paper work for me to sign, however he had to hand write the extra bits on, as removing stents wasn’t on there.

He signed and I signed. Perfect!

The lady then took over, and said “this is not quite the plan for you or for us, but can you drop your trousers to your ankles and get on the bed” 🤦🏼‍♀️🙈

No gown then no! 😏

As much as you are aware all three are going to be working on your va**na in the next 2 minutes, it’s still not comfortable to pull your trousers down infront of them 😂😂

However this was the case, and I was willing to do anything. So down came the trouser; and onto the bed I climbed.

The second I laid down, I had one of the males use sterile water, and wipe me… I swear he’s never been near a woman in his life… ouch!!
Then he applied some numbing gel to the area. Which again was bloody rough.

Then all three crowded around my bed, and the lady said you can watch the screen if you like. Or close your eyes and wish to be anywhere else. Lol!

The initial insertion of the camera was uncomfortable, and abit ouch! But once it was in, I couldn’t feel anything. So I opened my eyes and watched the screen. In the camera they then inserted a little grabber… which you can see a short clip of it working… and I saw them grab hold of my stent and the other one said to slowly remove it, and put it came. He then said that’s one out… the feeling of that coming out wasn’t painful but just very strange. He then said let’s go on for the other one, but the male with the camera said ‘no need I can see it, I’ll just grab it with my fingers’ and there… both stents removed.

They said all done, and I quickly sat up and redressed lol!! Awkwardness!

Even though my bladder was empty, they squirted liquid in to assist with removal. So I really needed a wee again.

They said my stents were fine, and they have sent them off to be tested.

They were a lovely trio! And let me take photos of my stents, laying in the a4 tray!
I wasn’t expecting them to be so long! But they were like rubber and bendy. So much that they squashed both stents into a urine test pot to be sent away to be tested.
And then they showed me the tools that were used; and let me take videos and photos.

I thanked them all; and swiftly left! Only to be called back to say have a wee before you leave please. I was heading there asap anyway!

Was the strangest feeling… the severe pains in my back and bladder had gone! The wee didn’t sting coming out, there was no dragging in my back as I p*e.

But to top it off, my wee was freezing cold! 😂😂 not body temperature. Obviously as it was just the liquid they had inserted.

What an eventful experience!!

But they are out!! Photos below ⬇️ ⬇️

12/04/2022

STENTS REMOVAL DAY!!
Never been so excited to have an awful procedure done!

GET THESE OUT OF ME!!!!

21/03/2022

💜💜 21st March 2022- exactly 1
Month later 💜💜

Exactly 4’weeks/1 month to the day.

👉🏻How has my recovery been?

Honestly!…. SLOW!

👉🏻How are the stents ?

Bloody HORRENDOUS

⚠️ Too Much Information 👇 ⚠️

The stents are the worst part
Of my recovery. The pain I get in my kidneys and my bladder is awful, but a weighted contraction.
If I walk round or stand for too long, I literally feel like my va**na is going to fall out.
My lower back aches so much.
And when I have to p*e, not only do I have the burning/ stinging sensation that feels like I have an awful urine infection, without being able to treat it, BUT, I also have the dragging pain in my back during every single time I wee (which is a lot) which is the stents moving up and down as my bladder contracts to release urine. 😖

And to top it off, because of the stents (a foreign body inside my bladder) it constantly feels like my bladder is full. And I am constantly going to the toilet, only to release a small amount… but having to feel this ⬆️ EVERY SINGLE TIME.

And to add to that; I’ve I bend, stand too long or try to left anything (even something very light) it causes my kidneys/bladder to bleed: which adds to the pain.

However I have been put on tablets by the hospital to prevent bladder spasms, to help settle my bladder from feeling full all the time. So instead of p*eing every 30mins, including the night, I am now more normal.

But my god, these 4 weeks have been so long.

2 more weeks of these stents to go. And then I can have them removed! And apparently almost instantly these sensations stop. 🤞

But on a positive,
My wounds have all healed/healing nicely. Stitches are beginning to dissolve and come away.
My Bowel is back to normal and working as it should.
My abdomen still feels very bruised in places.
But over all the recovery is going well!

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

💜Recovery - 5th March 💜Recovery has been okay, up until today. Sore, painful at times. Aching like mad. Bruising. Exhaus...
06/03/2022

💜Recovery - 5th March 💜

Recovery has been okay, up until today.
Sore, painful at times. Aching like mad.
Bruising.
Exhausted.

Bleeding had stopped, but the feeling of the stents dragging down my back each time I p*e, and the constant burning sensation is getting too much to grin and bare. But it does only last 5 minutes. But at the time it feels like forever.

But otherwise happy to be home.

However today,
5th March.

⭐️I’ve felt sick, hot and a fuzzy head!
⭐️I’ve hardly eaten.
⭐️Still drinking.
⭐️No temperature
⭐️ diarrhoea
⭐️ extreme pain in my kidneys and bladder
⭐️blood back in my urine

My husband called the ward and they have requested I go to A&E and be checked!

So here I am… sat in a&e since 1.30am… it’s now 6am!

I have been checked, and bladder scanned, blood tested, urine checked.

Seen by nurses, urologist and gynaecologist Doctors.

They have gone to discuss-

Plan A- complications with stents that they aren’t too worried about and send me home with antibiotics

Plan B- complications with stents that need image scans, and for me to admitted again.

Please let me go home 🤞

06/03/2022

💜 Good News - 6th March 7am! 💜

They decided I can go home!

They are treating the bleeding of my kidneys/bladder with precautionary Antibiotics.

They have prescribed me some tablets to try and prevent bladder spasms , which should limit the urgency of needing to p*e so much, and only releasing a small amount.

My bloods, we’re good a few markers still up, but all are lower then when I left hospital last week.

Urine test, wasn’t amazing. But no sign of infection.

Bladder scan, was good.

Kidney functions are perfect.

They have put it down to, trauma of moving and my stents banging around inside the kidney and bladder. Causing blood.

However I have been given access to to open door policy at Clinic 24. So I can by pass A&E if anything like this happens again while I have my stents in.

I’m exhausted! But I’m back home!

And I PROMISE I will relax! I think I have tried to run before I can walk. As I don’t want be a burden and I don’t want to rely on people. But I know I have to! Otherwise I’ll continue to bleed and be in pain. And I don’t want that.

Night night!! 💤

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

06/03/2022

💜 What Did I Have Done 💜

⭐️Removal of Endometriosis

- from my ovaries (they saved both of my ovaries, when original plan was I would lose them, and was offered egg freezing which I declined)

- from my bowel (I had a bowel resection, a disc of my sigmoid colon cut out, and then rejoined , original plan was to have a larger part removed and possible stoma.)

-from my kidney tubes (they were destroyed, worse then they thought. Stents in both kidneys. The right kidney tube was so bad they struggled to place a stent.)

- from my bladder (they didn’t know there was any on my bladder originally, so this appeared over the last 2 years)

- from my diaphragm/back of lungs , this was lasered off.

⭐️My bowel, my kidney tubes and my ovaries were released from eachother and are now
Sitting in their usual places.

⭐️Mirea Coil Fitted

💜💜💜💜💜💜💜💜💜💜

06/03/2022

💜Major Surgery - Part 3- 23rd February- 48 hrs after surgery 💜

After having some breakfast, and having a wander around a bay, carrying my drain bag, and my catheter bag. Speaking to my ‘bay friends’ I sat in my little chair next to the bed. On face time and calls with family and friends, all morning.
A few times, a nurse would come and do my obs, and pain relief. But the staff nurse came and said once your back on the bed, we can remove your drain.

Ohh yay I couldn’t wait NOT. I put off going anywhere near my bed all morning.
I ate my lunch, and chatted some more.
However I knew My husband was coming this afternoon. So I gave in, and got into bed around 1pm after the nurse came round again and said, I would like to remove that drain before I go off shift 🤣

No sooner I was on the bed, the nurse arrived with her ‘tools’ closing the curtain.

I hate this part, I remember it so well, from last time.

I closed my eyes, and squeezed my frog!

I could feel her snipping at stitched and pulling them out, I then felt her snip my skin, and I yelped… it’s okay she said! Well it’s not you just caught me with the scissors (but obviously I didn’t say that, I was just gritting my teeth into the frog)
This might feel strange, she said. (No s**t, I remember)
The long, wiggly tube, that felt like a slimy worm slithering around my insides was being pulled from my right side out via the left side. A dressing quickly applied. And she was gone!

Wow. She didn’t even say bye.

Soon after my husband arrived. Was so lovely to have a cuddle. He even brushed my hair for me. 🥰

The hour went quickly; and I was so exhausted. After he left, around half three I fell asleep, until about 6pm.

Unfortunately I had another horrible night, from pain in my kidneys. And lack of sleep again. But the nurses were amazing. I had the urologist back out again to see me in the night, and he checked me over again. But said all seemed normal.
I managed to pass some bowel movements 💩 during the night, pure water and the smelt was like I was emptying out disinfectant but a bowel movemnet is a bowel movement right 🤔 I finally drifted off to sleep again.

In the morning, around 7am. My surgeons arrived in their load. Checking me over. Having chats. And he finally said … that catheter looks good to be removed. And if you pass two urines scans today. I see no problem with you going home. WHAaaat!! Okay I can do this.
I want my home comforts, I want my family around me.

As soon as they left, 2 nurses appeared , one trainee and one qualified. They asked if I will accept trainee to remove my catheter. Which I agreed. So she got her syringe, and withdrew the liquid, only 60mls ( even me with work knew it needed to be 100ml) she looked at the other nurse. And was told there is always 100ml. So she syringed more liquid from the tube until it hit 100. Removed my catheter.
Instantly it felt more comfortable.

Within 30 minutes, I felt the need to p*e. And even opened my Bowles again… again disinfectant smelling water 🤦🏼‍♀️ but atleast my bowels were working.

I went for a P*e, into a pot for the nurses to measure. It was so red with blood. But apparently that’s normal. The pain of the stents dragging down my back and burning as the urine left my bladder.

Back on the bed, nurses came straight away and did a bladder scan. Which a passed, as my bladder was empty. So I wasn’t retaining.

And again my 2nd P*e, the same thing happened. The pain, the blood. And the scan. All passed.

That’s it your going home! 🥰

The nurses assisted me by waiting around whilst I had a shower, as previously I have fainted. I was clean, hair washed, fresh pjs too.

My husband was arriving at 2pm anyway for a visit.

I was so excited I told all my family and friends. I smashed this operation quicker then the surgeons thought. And I was on the road to recovery. 💪🏻

My husband arrived, and the nurses were wandering around sorting out my meds. And discharge paperwork.
But after a very short wait, we were on our way to the car. In the dreaded wheelchair. 🙈

Discharged with

⭐️MST Morphine Tablets
⭐️Paracetamol
⭐️Movicol
⭐️Blood thinning injections
⭐️Antibiotics

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜
ROAD TO RECOVERY STARTS HERE

💜Care Package 💜 Thankyou so much Becky Roe-Smith
05/03/2022

💜Care Package 💜

Thankyou so much Becky Roe-Smith

Address

Saffron Walden

Website

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