Tag: endometriosis

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Just another day on my head

So sick of being in my head. Now i am on morphine daily those things i had locked away are now roaming round my head.

I have no idea how to handle them. Im having nightmares again. But cant not sleep as the morphine makes me just fall asleep without warning.

But im just maoning again and no one wants to hear that.

So i have made a tiktok if u wanna follow me. Its basically a story of me on meds. u can see the effects its having.

Username: @socialbutterfly13

On another note i think i lost some endometriosis thru my bowels this morning. The pain was herrendous and im so tired from the ordeal.

Im tired and worn out.

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having a bad night

Its unbelievable how much i want another child.

Some one walked into work with there new born i had to walk out and ended up in tears.

Endometriosis is so cruel.

The pain

13 operations that have made no difference

The 6 miscarriages

The hospital stays

People not believing a illness they cant see

The bloating and painful swelling

Not able to have more kids

The endless pain meds that i try not to rely on

The early menopause at 35

The chemo meds i have to take that no one cares about cause i dont have them for cancer

 

 

 

 

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Things not to say to a girl with Endometriosis

So came out of my operation yesterday they only removed my ovaries but wanna see me in 2 months.

things did not go to plan in the recovery room and spend 2 hours in there. the glue they used did not hold an one of my cuts came open there was more blood then i have ever seen before. Nurses and doctors were rushing round and the surgeon was called back in. I had 2 numbing injections around the cut and was sewed up. I was finally taken back to the ward.

I was allowed out the same day as they only did the ovaries. I was getting dressed made my bed sorted my stuff out and heres what the nurse should not have said.

YOU CANT BE IN ANY PAIN THE OR YOU WOULD ASK FOR MEDS.

Well that wasnt true i was in pain but the endo pain is a thousand times worse. so to be told im not in pain was just mean. say well done for doing so well. No im not crying in my bed like the other 5 people on the ward but i have had 13 surgeries and normally have so much pain that i pass out from it.

 

Second thing unless u know about endo and the fact IT HAS NO CURE. please dont turn round and say

THINGS WILL BE EASIER NOW

thats simply not true the pain will be the same maybe a little better but endo will always come back.

 

 

Another Day

so today is another day of pain. To the point i am passing out again. I start a new job  tomorrow and i can barely walk, when i do im limping. Should i have stayed off sick like i was told to or am i doing the right thing and working.

All i know is that i have alot of pain. Didnt even have the strength to dye my hair today.

The PAIN:

Im not talking about a little pain, a little pain i can handle i hav can my shoulder popped out and back in with  no pain meds. so when i say im in pain i mean it. and if other people see im in pain then it rediculously bad as i hide it as much as i can.

But this pain feels like my left hip is constantly being punched from behind but some one is trying to rip it out at the same time.

when i stand or try to walk it feels dislocated and sends sharp pains accross my tummy and don my leg.

Passing out from the pain is not fun i am covered in bruises. How can i be sexy and attractive when i passout, have bruises and cant bare to wear clothes.

i have been given the prostap injection again on friday waiting for it to kick in.

 

Honestly dont know how im gonna cope this week. but i have to. and i will spend most nights in bed crying from the pain i am in.

 

I best sleep

Laying in the bath at 3.11am. THANKS endo

It’s 3.11am on a Sunday morning and I’m in the bath trying to ease back pain. Would say back ache but that really doesn’t do it justice.

With my belly very swollen and my back throbbing like I have been hit by a car. I wonder when I will get to sleep.

My partner is in bed with a 12 hour shift ahead of him and I don’t wanna wake him and complain of my pain. He wouldn’t mind of course but I would knowing how tired he will be tomorrow.

I have a bedroom to move round later today. Tried to do some yesterday did half of it before I was out of breath and hurting.

THIS IS MY BAD WEEK (10 DAYS)

But hopefully I will get the prostap injection this week. That helps ease the pain slightly. But will eventually kill my ovaries and I will have no hope of saving any eggs.

The injection itself comes with drawbacks and acts like chemo does. I will loose some hair, be sick and my immune system will all but disappear. Its the price I pay to have less pain.

Things I have found out this week…

Love isn’t dead.

Don’t push away the ones that love u the most.

I have a seizure before I become unconscious.

This week I will learn that doing it alone as a parent is gonna be the hardest and most emotional thing I will ever do. But it will be worth the most.

This week I have kept my kids pics with me and I have missed them so much. But come Monday I will have them in my arms.

Being a parent is about trying ur best no matter what the situation. They may not have everything they want but they will always have whatever they need. Xxx

Endometriosis and the Medical Profesionals

I think I spelt the title wrong.

But maybe I can be forgiven after the last few days.

I went to Wales last weekend as our first family holiday. Was so nice and gorgeous there. We went for my daughters 4th birthday.

Then on Monday after working for half a day I went to see Lukas Graham in concert. His voice is amazing live.

The reason I am writing today and may ramble a little as on a lot of Morphine right now is because since Sunday I have been in agony. It has got to the point I am unable to walk properly, need help to the toilet and cant do anything for myself.

Now my work don’t know how ill I am. So yesterday instead of my usual suit trousers I wear to work I figured I could get away with black jeans. This did not go down well and was given a warning. How do I explain to my two male bosses that when I get on pain my tummy swells to the size of a 6 month pregnant women and my suit trousers will rip. Today I have had to buy a size 16 pair of trousers which is 2 sizes bigger then what I am and a belt.

Today the pain got horrendous and I dialled the 111 service as after 83 calls to the doctor I could not get an appointment.

The paramedic that I spoke to on the phone was great he knew what endo was he understood about it all. He called an ambulance. This is where it all turnt bad. After a 50 min wait 3 paramedics turnt up. Now one of them was great he knew exactly what endo was to the point he was asking questions the specialist does. The other two where not so nice here is a few things that were said to me.

  • if you have the meds why call us.
  • doctors can deal with this
  • your blood pressure and pulse are fine
  • why do I not just go to bed
  • if you collapse don’t call us back here.

Well heres my argument. My meds are not working I don’t call them for the fun of it. Doctors wont deal with the pain when its this bad as they can prescribe anymore then I already have. My blood pressure is naturally low to the point when I do go to hospital they wake me up in the night to walk around to raise it. My pulse is naturally sat around 51. which is really low. when they checked me my blood pressure was 128/91. Which for most people is normal but not for me. The pulse rate was 89 now considering its usually 51 that’s really high for me to. Next I have tried being in bed, ive tried a bath, ive tried sitting standing, falling and laying its not helping and im unable to sleep. The next one really annoyed me. So if I collapse no one can call an ambulance for me.

So right now I am sat downstairs dreading the next tine I need to go loo, on the most amount of meds I can take still in agony.

I would not wish this illness on anyone. The NHS need to study about Endometriosis its a common illness.

Endometriosis Awareness

So I’m not sure who will read this but this month is

ENDOMETRIOSIS AWARENESS MONTH

Most people won’t know what endometriosis is. Although it effects 1 in 10 women across the world.

It is the lining of the womb attaching to places outside the womb. Meaning it sticks organs together and bleed each month just like a normal period.

Here are some of the symptoms

– Heavy irregular periods

(Heavy enough to cause you to faint and become anaemic)

– Servere pain all month round

(This can cause people to pass out and vomit)

– Bloating

(You can bloat up more then 4 times bigger then ur usual dress size)

– Painful sex

– Painful bowel movements

– Hip pain

– Back pain

– Infertility

These are just some of the symptoms that wen with Endometriosis have to go thru. Right now there is no cure and no real treatment. We don’t get much support either as most people think it’s normal for a women and just regular period pains.

HERE’S MY EXPERIENCE

Not sure where to start. I was officially diagnosed in 2006 via laparoscopy. A key hole surgery so they can look in ur abnominal area. But my pain started since my periods began. With cramping and bleeding so heavy I was passing out and missing school.

No one understood and thought I was exaggerating the normal for every other women. My Foster mum atm even checked my sanitary pads to see if I was lying.

Even on the day of my laporoscopy my partner at the time threatened to leave me if they found nothing.

Since then I have had 11 operations including a hysterectomy as I was told it would cure me. (what a lie that was). My appendix removed as it was covered in endometriosis. And bladder reconstruction surgery due to endometriosis again.

I have had 6 miscarriages and thank good I have 2 gorgeous kids now.

I must have visited AnE more then 100 times to just here the doctors saying I’m after drugs. The truth is I have more morphine on my cupboards at home then a pharmacy has. If it worked I would not have gone to the hospital in the first place. I have been sent away after being told its just a urine infection. It gets to the point that I cry when a doctor actually knows what endometriosis is and actually helps me.

I pass out when I’m pooping due to pain and collapse random days. My stomach can go from flattish to 4 dress sizes in less then half hour. I cancel plans at the last minute and loose friends because of it.

Friends are a issue to me cause no one understands. Everyone has a friend that has endometriosis and they can work and go to gym and never cancel plans. So why do I.  One person said I must have relatives from Africa as only black people get endometriosis (that’s her exact words, stupid I know)

I have my family and my partners family saying I fake it. This has to be one of the the loneliest illnesses. I myself have tried to commit suicide over this.

My reality is my days are unpredictable and painful. I smile everyday so no one notices the pain I’m in.

The Truth about Endometriosis

I was diagnosed in 2006 at the age of 22. But the pain started years before.

This is going to go in depth so if you are squeamish this might not be the blog for you.

It all started at 14 when I got my period. The pain was horrendous and the bleeding was scary. I bleed for 11 days and went through 3 backs of pads. I was worried and scared but was told it was normal.

The periods carried on this way to the extent I was in a lesson and waited til everyone had left because I had bleed through onto the seat enough to make a puddle. But once again I was told this was normal.

I was a shy girl and did not know how to talk about things and even though I had 5 sisters was not close to any of them, so didn’t discuss anything with them. I was a lonely child.

At 16 I got pregnant and lost my baby at 4 months. It was devastating but was told it happens to everyone. Since then I have misscarragied 5 more babies due to endometriosis. They were all bad and scary.

Although one stands out. I got cramps and it wasn’t endo didn’t think nothing of it and didn’t know I was pregnant at the time. Then the bleeding started but this time it was different. I had misscarriaged before so I kinda knew. I went to the doctors and they confirmed the miscarriage although I had not passed all the tissue so was give a pill to help me pass the rest. The second pill i had to take at the hospital. It was heart breaking.

I arrived at the hospital and was taken to the maternity ward and put in a side room. I could hear women in labour and babies crying. The pain got worse and worse and I was alone. I passed the baby and the nurse asked me if I wanted to look. Who asks that question I was not far gone so my baby was more blood then anything else. I told her something didn’t feel right. But 10 mins after I miscarried she sent me home. I walked home alone that night. It was around 10 at night.

I was going to a car show and felt fine just slight back ache. Whilst there the craps started again, I managed to hide it and on the way home I asked the friend drive to take it easy as pain was bad. he was a dick and thought it was funny to go the route with all the speed bumps. By the time I got back to my area I asked him to drop me off at the hospital. I was in agony but no one came with me. I told the receptionist what was happening, by this time I was bleeding all down my legs and informed them this and told to just sit down. I called a friend to bring me pads and I was changing all the time. The waiting room was packed and there was blood all over me. I finally got taken in and was told until they confirm I was actually miscarriaging they would not give me pain meds. I was made to walk to the toilets every time I felt I was bleeding or passing my baby. They even brought in gas and air for me as soon as it was confirmed. The pain stopped after I passed large tissue. I had a scan to reveal that it still wasn’t over. A week later they called me in for a DNC.

Although all miscarriages are bad that’s the one that haunts me the most.

There are so many lies about endometriosis. I fell for one of them. The one that says a hysterectomy cures Endo. I had a total hysterectomy 2 years ago yesterday and its been my biggest regret. I have 2 gorgeous babies and would not change them for the world. But having the choice taken away to have more is devastating.

I have had 11 operations due to endometriosis.

When I had my first operation to diagnose me my partner at the time did not believe me and told me if they find nothing he is leaving me.

Everything is worse now. Sex is painful, shitting is painful, I swell up 2 dress sizes in minutes, I cant exercise much, lost multiple jobs, have more operations coming. The pain is unbearable some days to the point I throw up and pass out.

The part that is the worse is that people don’t believe you. They don’t understand that you are in agony but have to carry on your day anyway. I have had people not believe I have had operations cause I bounce back fast. What they don’t understand is the pain from the operations including the hysterectomy is nothing compared to endometriosis pain.

I have had doctors say I go to hospital to get meds. I go to hospital when its got to the point that the morphine I have at home is not working anymore and im in so much pain I cant cope. I have had ambulances refuse to take me to hospital because its an on going condition I should know the signs.

That’s a picture of my belly swollen leaving me in pain and unable to move much.

Endometriosis is a terrible disease and barely anyone knows about it

 

 

 

 

 

Things I keep hidden

I have changed my name in hope my friends don’t find this. But I wanna tell the story of my real life. The way I feel inside.

I am writing this because some time you just have to let it all out. The sadness and the anger but you don’t know who to tell.

Everyday I wake up with a sadness in my heart. Everything a human enjoys I have lost. I have a deep saddening and even though there is a lot going on and I normally pull myself out of this rut, for some reason this time I cant.

To this date I have lost 6 babies, but I am grateful and love my two gorgeous kids that did survive. I suffered from Post Natal Depression with my first and couldn’t hold or deal with him for the first few weeks. I was lucky it didn’t last longer.

I have Endometriosis that was diagnosed in 2006. It was a fight to get diagnosed and has been a fight ever since. From 11 operations including my appendix being removed, a hysterectomy and the rest were removal of endo. My body has scars and miss shaped from  surgery’s.

But all this has been a fight from doctors saying its not real and its only period pains, to being called a druggy at the hospital even though I have plenty of morphine at home. Being told I cant have an ambulance out after I collapse cause its an existing condition. To fight for every operation that I need to have to try to keep endometriosis at bay. The fact sex is impossible without pain and even taking a shit is one of the lost painful things I have experienced to the point im throwing up and passing out. But once again not being believed.

Then theres the Fibromyalgia. The full body aching, easily bruising, tiredness, forgetfulness and the brain fog. I can drive from one place to another and not remember a thing about my journey, I forget peoples name sand have to write stuff down.

I cancel doing things with friends often but they think Im being boring or lazy. I pass out on nights out and people think im to drunk. As soon as you say what you have wrong with you people always know some one that’s worse and still copes.

The nights laying in bed crying in pain but you have no one to hold you. the loneliness and isolation. Remember the days I wore nothing but heels and didn’t have to worry about my stomach swelling up 2 dress sizes and people asking if im pregnant. No one understanding how I still get upset walking down the baby isle even though I have two kids.

People saying how lucky I am because I get a disability car but I would love to pay my own way. The realisation of knowing I will never own my own home or I could die.

This is not a sob story, I just need to release some feelings.