kintsugi scar

I have been trying to help myself with my depression. I decided to try and really focus on the positive things in my life. celebrating the small successes and things that are going well.

Then I got to thinking of my scars, I'm not ashamed of my scars they are my battle scars, and show the battles I have been through and represent what I have become. 

I have not always had this relationship with my scars on my wedding day, I used makeup to cover up my scars on my wrist. I was current at surgery 2 out of 4 and desperately unhappy. This was because a few months before I had had to leave my job as a technology teacher. I could no longer do the demonstrations that I needed to do to be able to teach my students. This made me very angry and upset and I didn't want to be reminded of this in all my wedding pictures for the rest of my life. 

Now 4 surgeries on my wrist with more scars and still constant pain in it that gets worse when I use it. I have excepted they are apart of me and my journey, much like the rest of my scars over my body. I got my first when I was 4 a surgery on my neck to remove a sinus. This scar would get red and inflamed when I was unwell so I grew up very aware of it and it took years for me to accept it as a part of me. 

All this contemplation got me thinking about how to be more positive about my scars and I remembered how the Japanese treat a broken plate or bowl. Were we throw away a broken plate (labelled as broken and useless) or try to fix it but use super glue of other materials (trying to hide the break). The Chinese repair with gold, silver, or platinum to repair theirs they want the break to become apart of the beauty of the piece.

Wanting to find out more I decided to do some research and found out what the technique is called and how it all started. below is the history.

Translated to “golden joinery,” Kintsugi (or Kintsukuroi, which means “golden repair”) is the centuries-old Japanese art of fixing broken pottery with a special lacquer dusted with powdered gold, silver, or platinum. Beautiful seams of gold glint in the cracks of ceramic ware, giving a unique appearance to the piece.

This repair method celebrates each artifact’s unique history by emphasizing its fractures and breaks instead of hiding or disguising them. Kintsugi often makes the repaired piece even more beautiful than the original, revitalizing it with new life.

History

Kintsugi art dates back to the late 15th century. According to legend, the craft commenced when Japanese shogun Ashikaga Yoshimasa sent a cracked chawan—or  tea bowl—back to China to undergo repairs. Upon its return, Yoshimasa was displeased to find that it had been mended with unsightly metal staples. This motivated contemporary craftsmen to find an alternative, aesthetically pleasing method of repair, and Kintsugi was born.

Since its conception, Kintsugi has been heavily influenced by prevalent philosophical ideas. Namely, the practice is related to the Japanese philosophy of wabi-sabi, which calls for seeing beauty in the flawed or imperfect. The repair method was also born from the Japanese feeling of mottainai, which expresses regret when something is wasted, as well as mushin, the acceptance of change

please check the link below for more information about Kintsugi 

https://mymodernmet.com/kintsugi-kintsukuroi/

So I decided to paint my scars gold to celebrate the journey I have been on and the new me that they have created. I may still be fighting multiple illnesses but these scars are reminders of the warrior I have become due to each of these fights. They make me more unique and I except the change that my body has gone through for me to be who I am now.

4 x wrist surgeries, 1 suspicious mole removal, & sinus removed from my neck

3 X endometriosis removal & appendetomy, 1 hernia repair.

 

 2 X foot surgery to correct Hammer toes/clawing of toes 

I am hoping to raise awareness and start a challenge to paint your scars gold or silver and share on social media to help raise awareness for body positivity and being proud of our journeys and fights through challenges of illnesses. please check out my Instagram for more information link below.

https://www.instagram.com/endo.adeno_warrior/

Menopause

On the 6th February, I booked to see my consultant, yet again I paid to see him privately as NHS I was still waiting for my diagnostic lap never mind a follow-up appointment to get any medication to help in the meantime.

At this time I was currently not on any hormones due to the fact that when I last saw them I was being investigated for possible progesterone allergy.  They diagnosed me as having chronic spontaneous urticaria in August of 2018. This meant that while I could have progesterone medication it was still best to avoid the menopause injections. This was due to the fact that if it caused stress in my body that could set off an allergic reaction they can't stop the medication as it lasts a month, and this could be very dangerous.

When I saw my consultant he said while this made it more challenging as the injections would be more suited to treat me the risks were too high. He did have an idea and suggested I try Provera tablets to stop my periods and give me menopause type effect. The tablets are the same active ingredient that is in depo-provera. He suggested I started with 30mg taken 10mg 3 times a day, and that the dose can be increased by 10mg a time until the medication stops my periods. However, he did warn me the higher the dose the worse the side effects would be.

I started on 10mg 3 times a day (30mg total) within the first week I was feeling nauseous. within 3 weeks I was getting hot flushes and headaches.

By week 7 I started to spotting I spoke with my GP who upped my dose to 40mg a day.  My pain was still really bad, and I had thought because I didn't have my normal period 3 weeks ago that the meds were working but they weren't.

Starting to take the 40mg had an impact straight away the hot flushes got more intense and I was getting night sweats, the headaches were worse and nausea had also given me vomiting I was bleeding more and more and it was beginning to set off my urticaria. This was because as well as Endo/Adeno flare ups I was bleeding more and having all the side effects of the menopause. My body was under so much stress I couldn't stop the reaction and had to take steroids for longer than usual for one of my reactions.

A few days later My period started (well I think it was a period I was bleeding more than previously but still not as much as a normal period for me) and I emotionally I was struggling with how unwell I was feeling. I went back to my GP, he upped my dose of Provera to 50mg a day and put me on antidepressants. I was struggling as dealing with all the issues I was before, plus the menopause side effects and urticaria reactions. This medication was meant to be making me feel better but instead, I felt a lot worse than before. I was struggling to look after my children and felt like my body was failing on me. I didn't want to live in this body anymore, I was only still here because I couldn't bare to leave my children without a mum.

The days that followed got worse with every day that went past. I was being sick 3 or more times a day, barely eating anything at all, and losing weight. Yet still my stomach was swollen and I looked pregnant. This was such a hard time and on the 17th April, I saw my consultant again privately to talk through my diagnostic lap (from 1st March) and discuss the options for hysterectomy. He agreed I could have it done and would try and keep my ovaries. He would also remove endometriosis at the same time. He gave me all the information for getting this started and I'm now waiting for a date for this.

I also spoke with him about the Provera as I was still bleeding (more days than before taking it) and having urticaria reactions. He agreed that if at 50mg things were getting worse not better than its likely higher dose would most likely not help either. He advised me to stop taking this straight away.

It took 2 weeks for me to start feeling better from taking Provera. My endo\adeno symptoms never improved while on it. I still don't have much of an appetite and I still have some of the side effects. For me, I have run out of options for hormone treatment as this was the last thing he could think of to try, my urticaria means my options for treatments are restricted. I'm hoping a hysterectomy will reduce my symptoms enough that I will be able to get some quality of life back.

Overall, I don't think I have gained much from my time on the menopause. I felt worse (and still slightly affected by this) and it didn't improve my endo/adeno at all. So I feel like I lost months of my time as I couldn't do anything. it makes me realise more and more that they need to try and find a better way to treat this awful illness, rather than just giving us a paster for a massive wound. They also need to realise that every woman is different and what works for one woman will not work for every woman. Especially when they have other illnesses that make it more complicated.

left to wait

I have been waiting a long time to find out where my endo has spread to. Referred to the consultant in December 2016, I didn't see the main consultant until I paid to see him in March 2018 after I had only seen his registrar who disregarded what I said and said unless I had tried Mirena coil again and the menopause injection he wouldn't do surgery.

I was told in March they would put me on the waitlist for a diagnostic lap to see where the endo has spread too. in July I saw my consultant again and got MRI results and he confirmed I was on waitlist. but would stay at the top of the waitlist until My allergy specialist gave me the all clear. In December they still hadn't heard from my allergy specialist who was meant to write in August and again in September. January I got a copy of this letter and sent it to my gynae consultant. he then sent me a letter to say how they had heard from my allergy specialist they would put me back on the waitlist.

I hit the roof back on the wait list you mean I wasn't already on the list. I spend hours calling various people in the hospital for the next month. End of January I had, had enough not treatment or surgery and had been waiting for the last 2 years for any help. I paid to see my consultant privately again and he said I could have a drug called Provera, because the allergy clinic had tested me with this med and it is the same drug that's in the injections. so should do the same thing and put me through menopause but I have to take drugs 3 times a day.

My consultant confirmed that while he requested I go on the waitlist and stay at the top until they hear from my allergy specialist they didn't do this. He said if your at risk of going over the government guidelines while awaiting tests of any sort they take you off the waitlist and put you back on the list when they have results. the issue with this you don't go back to where you would have been on the list you go to the bottom. for me and my local hospital diagnostic waitlist is about 7 to 8 months. I had waited
15months from the first referral to get put on the list. dec2016-march2018
10months from being put on the list to allergy specialist writing to the consultant.
then I was looking at potentially a further 8 months.

I got very upset and kept chasing every person I spoke to gave me a different answer and different expectations of when I would eventually get a date. I knew there had been other patients who had not waited as long at all same doctor same hospital. One lady had been seen by consultant end of Dec and surgery mid-JanJan less than a month wait. because she was marked as an emergency.

I explained that I have allergic reactions to whenever my body is under stress and that every month my endo gets worse and my reactions are getting worse. with every ovulation and period, I have reactions. they can sometimes be so bad they affect my breathing and I end up in Resus having adrenaline this can be very dangerous, what part of that is not emergency, my endo could kill me if it causes an allergic reaction they can't stop.

Next couple of weeks I felt like I was talking to brick walls then suddenly I get a call they have a date in less than 2 weeks time. I couldn't believe almost a year of waiting I will know how bad it is and then they can plan the treatment operation. I have only 2 days too wait then its big op day. its finally feeling real and im getting nervous about knowing the true extent of my illness.

poetry part two

The first poem was written in the middle of the night when I couldn't sleep. To quiet my overreactive mind I put it into a poem. I find creativity really helps me deal with the emotional aspects of my life.

Insomnia Cave

I lay in be darkness all around me.
I close my eyes and take a deep breath.
tonight I will sleep!
As my eyes get heavy I hear a sound.
The sound I dread the most
What if!
No, No, deep breath and calming thoughts.
What if, what if!
It's getting louder......
No, no, no go away.
Go away I don't want you here,
you're not welcome anymore.
but the more I try to sleep the louder the sound.
What if, what if, WHAT IF! it shouts.....
I want to think of happy thoughts,
of hanging out with family and friends.
I visualise the happy times in front of my eyes.
I'm snatched and pulled into the dark.
What if, what if, WHAT IF it shouts.....
suddenly I'm surrounded by thoughts so negative
so negative I want to cry
but all I hear is What if@
wish there was an off switch
to make it go away
wheres my knight in shining armour to rescue me
nowhere as I'm not asleep it's only me I fear
fight as I may I cannot escape
I need to wake to escape, I'm not yet asleep
all I hear is what if, what if!
and now I'm laying here wide awake
in tears and thinking to myself.......
WHAT IF!
(Hollie Allen 11/11/2018)


This next poem is about how I often feel like I wear a mask to cover up how I truly feel.  I think people with chronic illnesses get so good at wearing a mask that others don't often notice that they are even doing it.

Underneath
I wear a mask most every day.
well, sometimes two or more.
you see this smile it's not real
its the mask I wear the most.
but its fakeness rubs off on me
and so in time, my words become fake.
I'm okay, I'm fine, I'm alright.
all fake like this smile you see.

I need to be honest but I cant
I fear no one will understand
so I keep wearing my masks
to hide the world from true me
sometimes the mask slips and falls
to reveal the face underneath
for underneath is still more lies
this is why I wear more than one
to protect the world from the underneath.

For underneath this smile is my okay face
it's not happy or sad it just says urgh
most people struggle when this is seen
they don't know what to say
so awkwardly say it's not that bad,
think positivity.

But the truth is it gets darker underneath it all
for hidden next is sadness
this sad face shows a bit more truth
but still more hidden underneath.
the sad mask makes others uncomfortable
for that, I cannot help
it's only a small piece of the truth hidden underneath
most people just look and stair
maybe whisper of what they see
for they do not understand
the pain inside me

but if its bad and this mask slips
the truth from inside shows upon my face
I no longer have a place to hide
I try to be strong and show the truth
but no one knows what to do
with the depression found underneath
the lies of disguise just can't hide

just ask me how I am? I feel
but you're too scared of me
what is it of my truth that upsets you so
is it the fact I'm not happy
in distress, now my masks have gone
please just ask me how I am
learn more, or offer me support
then I might not need my masks to wear joy.
(Hollie Allen 01/01/2019)

This poem I wrote when I was struggling with my illnesses and feeling very overwhelmed by my life. I felt alone but wanted to process this into something creative.

Waves

I'm surrounded by darkness,
I'm all alone......
But I'm not alone
I'm surrounded by water.
So much, it tries to pull me down
Every day I fight,
I fight to just stay afloat.
I keep trying to stay above the waves

But the more I fight the more tired I get
I don't know how to stay
How to stay afloat and not give in.
As time passes by the harder it gets
It's not getting easier
As I sink beneath the waves
For a moment I wonder....
should I just let go

Should I let this darkness win.
The light in the distance is fading away.
No, no, I tell my self.
even though it's hard don't give in
I fight to reach the surface
but the seaweed grabs my legs
When will I get a break, I want to win.

I manage to break free and reach the surface
With one big gasp of air, .....
it's not over yet.
But still more, the darkness throws more at me
My situation just gets worse
It's getting colder and the winds getting strong
The waves just get bigger and bigger
It's like it's trying to take me down.
My fight just gets harder

I feel it's unfair while others walk on dry ground
I stay here trying to just stay afloat
Just trying to survive.
A boat passes by
Can they see me?
I try to wave..... scream and shout
But I sink underneath
They can't see me......

As I return to the surface
It just passes by
Now I'm all alone again in the darkness
Should I give in it's been a long fight
But I'm so much stronger than this
It will not be my end

I have to fight on to warn others
So no one else has this fight
So fight I will, I'll scream and shout
And soon I will get heard
And when I do I realise
I'm not alone at all
There are others here I'm not alone

Maybe together we will be heard
With new found strength I shout and fight
And with every voice I hear
The struggle just gets easier knowing your about
I'm not alone
I can go on

This is not how my story ends
For I'm a chapter in a much bigger book
The book of all of us
Together were all the story
and our voices will be heard!
(Hollie Allen 02/01/2019)

Welcome 2019 review of 2018

2018 was a rough year for me, I had multiple stays in the hospital and my health got worse and worse. The positive I guess was getting the diagnosis of 2 conditions.

At the start of 2018, I was struggling with the coil that was fitted in November 2017. I had been heavily bleeding since it was fitted, and having allergic reactions every two weeks. I made the decision to remove my Mirena coil in February. I thought this would help it stopped the constant heavy bleeding but nothing else.

In March I had my appointment with my gynae consultant put back again with flare-ups that were getting worse and worse with every month that went past and the allergic reactions still happening I decided I had to see the Head consultant in my area for endometriosis. I paid £150 to see him privately for about 15 minutes consultation. But it was worth it, he agreed my condition was very bad and I needed a diagnostic lap before removal of endometriosis. He also wanted to do an MRI to also give a better look. He wrote to my hospital to recommend this and I was put on the waiting list for both surgery and MRI.

In May I had pain that was getting worse and worse. I went to see my doctor who referred me for blood tests. But a few days later I woke up on a Monday and was in really bad pain My period was also 5 days late. I went to my doctor again who phoned the hospital and booked me to go to the surgical assessment unit. They were worried about it possibly being an ectopic pregnancy. blood tests came back and it wasn't a pregnancy but possibly linked to my endometriosis, so I got sent to the gynae ward. They gave me painkillers and requested ultrasound and MRI. That night I got worse, I was light headed and dizzy, they checked my blood pressure it had dropped to 80/50 they all started to panic and called the on-call doctor. it took 3 litres of fluids to bring my blood pressure back up to what is normal for me. I often have a lower range blood pressure 100/70 to 110/80.
On Tuesday I had my ultrasound they said it didn't show much just some endometriosis on my right ovary. I stayed in the hospital as even though I was on a lot of Morphine I was still in a lot of pain. They kept chasing my MRI referral, but still nothing.
Wednesday I was still in a lot of pain, they requested a pharmacy specialist to come and talk to me about painkillers. In the afternoon my gynae consultant came up to see me. He wasn't working that ward but he had been contacted re-treatment plan so knew I was in and came to check on me. This was amazing, he talked me through what had happened apparently the ultrasound had shown a large burst cyst and a lot of free blood in my abdomen. I was shocked as they had told me nothing was wrong, but this explained the amount of pain and my blood pressure dropping so much. He talked me through future options but said hopefully the MRI will give more results to make a more informed choice.
Thursday I managed to get my MRI and then reviewed by a pharmacist. they decided to try Oxycodone and see if it helped. It helped more than morphine but I still had a lot of pain. The doctors came to talk to me and said I was a bit of a problem and hard to treat (due to my other health conditions) and was making their jobs more difficult. I was discussed and so unhappy by this comment, I can't help my health conditions a would certainly pick an easier option if I could.
Friday they said they had my MRI results that showed Endometriosis but not too bad and that was it. they said they would discharge me and I should see my consultant for further treatment. When the nurse gave me my discharge papers it showed I had a lot more than just some Endometriosis. My womb was stuck to the peritoneum layer, the right ovary is attached to the back of my womb, the womb is attached to bowel and other pelvic areas, and I have adenomyosis. I cried What an incompassionate way to get a diagnosis. I was sent home with oxycodone and bed rest. I also had low iron and had to take iron tablets, it took me months to recover from this.

June I ended up have a very bad allergic reaction that started with a rash and progressed to affect my breathing. First I was given antihistamines, and steroids but my breathing got worse. I ended up needing to go to Resus where I need adrenaline to get the reaction under control. 

In July I got to see my consultant again and he said I still needed a diagnostic lap first to see how badly the bowel is affected and where else the endometriosis is as MRI didn't show endo on bladder but he thinks it probably is on there too. He also said I had quite a few cysts on my ovary they are small at the moment ranging between 1 and 2cm. He agreed that a hysterectomy would help with the Adenomyosis, but wants to try a keep my ovaries if possible.

Then in September I finally had my allergy testing. I got diagnosed with "Chronic spontaneous Urticaria". They explained that my body produces too much histamine whenever my body is under physical and emotional stress. I got put on 2 different medications to try and keep the reactions at bay, and extra meds for when I have a reaction.

My endo pain has been getting worse and worse, with more and more pain. In October I started to get pain just under my ribs but inside, not muscular. My GP thought it may have been my Liver or gallblader as on examination thats what it showed. He referred me for an ultrasound and in November they checked everything liver kidneys, gallbladder and stomach. They said its probably very likely that I have Endometriosis in this area.

Ending the year I have pain when I eat unless its a small meal. I Have pain every day that gets worse the more I do. I am still having regular urticaria attacks but the serverity is less. Having been put on the wait list for a diagnostic lap In March I am still waiting for this op. It's frustrating it took 17months to get put on the list, now over 9 months and still no lap, and I know that the wait list for hysterectomy is over a year. which I won't get put on until I have the diagnostic op. It's looking more and more like I'm not getting hysterectomy and endometriosis removal until some time in mid to end of 2020 maybe even 2021. I'm really struggling with the idea of being left to suffer for the next year or 2, with no relief at all.

2018 was a hard year and as I see everyone writing about that this year is going to be the best year ever, I struggle because on the 1st of January I felt very unwell and had pain in my breast. I went to my doctor on the 2nd and was told I have mastitis. I'm not breastfeeding but I have suspected high prolactin. I still have milk even though I stopped feeding my daughter 11months ago. The doctor put me on 2 different types of antibiotics, one is a very strong one and has made me feel quite unwell, so even though the antibiotics are helping the infection I still don't feel much better. This was not the start to the new year I was expecting and I hope it's not a sign of things to come. Hoping you all have a happy and healthy 2019.

A to Z or incurable chronic illness

First A to Z of chronic illness.

I was diagnosed start of 2018, but I believe I had had it for much longer. I had last seen a gynae doctor in 2010. I had a bad experience and didn't want to go back again.

My diagnosis was hard I had been admitted to hospital for a burst cyst and they did an MRI. Doctors told me they just found endometriosis, but my discharge papers said they had found adenomyosis. This was a hard way to get this news there was no compassion or support. 

Adenomyosis is a presence of endometrial cells within the muscle of the uterus. During a period tissue and blood can't be released, and flow out of the body, and so causes swelling and intense pain. It can often be misdiagnosed as fibroids

More info go to www.adenomyosisadviceassociation.org

I have tried lots of types of birth control. I have tried pills and had lots of side effects from these, and tried the Mirena coil twice. The first time I fell pregnant and miscarried. The second time I bleed heavily for 3 and half months losing 80-100ml a day.

The consultants wanted to give me the menopause injection but it's too dangerous for me because I suffer from chronic spontaneous urticaria were I have allergic reactions whenever my body is understated. The worry was if I react to the injection they can't take it away and this could make me very ill.
So I'm currently coping with no birth control at all right now. So my endo is out of control.

But it seems more and more doctors want to treat endometriosis and adenomyosis with birth control. This is just plaster on the problem.

Birth control types
Progestin only pill
Estrogen-only pill
Combination pill(both hormones)
Implant (plastic stick under skin that releases hormones)
IUD (Mirena hormone pill, copper coil)
Zoladex (menopause injection)

From my first period, I always had bad cramps. I dismissed it as my GP told me it was normal and just get used to it. It wasn't until I was diagnosed in 2007, having suffered for 7 years that it all made sense. However the older I have got and the worse my endo/adeno got the worse the cramps have got.

During my period they can be so bad that I can barely speak or move until the pain subsides. It feels like someone is ripping my insides apart from the inside. Every part of me feels like it's being shredded. I also get cramps when I ovulate, this can be from a few days before until a few days after. Then there are the days and times when I have been very active and I will get cramps then too. One of the hardest to deal with is the painful cramps after sex. These can sometimes last into the next day. 

Menstrual cramps are caused by the uterus contracting to help expel the lining of the womb.
It's the hormone prostaglandin that creates this and high levels of this hormone can cause severe menstrual cramps.

Women with Endometriosis and Adenomyosis get cramps that can cripple and effect everyday life this is due to adhesions that pull on other organs when uterus contracts (endometriosis) and the cells in the muscle wall being pulled and pushed (adenomyosis)

I have struggled with depression for most of my adult life. My health has been one of the largest contributors for this. I have suffered from multiple illnesses and had 11 surgeries only 2 for endo.
Being made to feel that my illnesses are in my head. My GP told me what I was experiencing was "normal and get used to it". I have had multiple consultants after diagnosis say "you don't have endo you're wasting our time" I damaged my wrist in 2009 and after 2 ops and pain being worse I was told it was "all in my head" after the second opinion it was not in head but needed more 2 more ops and I'm left with permanent damage. .
Being in pain every day is emotionally exhausting. Some days I feel like I'm doing less of a job as a mum because I am not as physically able to take the kids out and be a fun mum.

Depression is very common in people who suffer from chronic illness. It can feel very lonely when you're in pain and unwell, especially when many people have either never heard of your illness or don't understand it.

Endometriosis/adenomyosis are much more than just a period they affect a woman every day. With multiple different symptoms. Dealing with these on a day to day basis is hard and takes its toll on your emotions.

Urticaria is more than just a rash it can be a life-threatening condition.

If you're in the UK and really struggling please contact www.mind.org.uk
Don't suffer alone.

I was diagnosed when I had my appendix removed by quite simply luck. 7 years after first of many visits to go about painful heavy periods that they dismissed as "normal"

2 years later I had the second op but it came back a year later worse than ever. I knew I wanted a family and my consultant told me that any more surgery could cause me to not conceive.

I have been very blessed to have 2 healthy children, but sadly also had 3 miscarriages. Pregnancy was hard I had a lot of pain the whole time and my labours complicated.

I am now currently waiting for a diagnostic lap to see how bad endo has affected my bowels and where else it is effected before I have a hysterectomy for adenomyosis and removal of as much endo as possible.

I am in pain every day, it's just the amount that changes. I get bloated when busy or at the end of the day. And I get pain if I walk for more than 10 minutes.

Endometriosis is where the lining of the womb (endometrium) grows outside of the womb onto other organs and causes adhesions between organs too.

This condition can cause high levels of pain, nausea, vomiting, headaches, bowel and bladder issues, bloating, fertility issues and many more symptoms.

There are many theories for what causes it but no one really knows. Treatment can range from pain relief, hormones to surgery, but it's incurable.

For more information and support go to www.endometriosis-uk.org

F is for Fertility.

At 22 I was told the only cure is a pregnancy in 2007. THIS IS NOT TRUE.

My 1st pregnancy was in 2011. I had a Mirena fitted but sadly ended in miscarriage. In Aug 2013 I got those 2 lines we all want. But while my family wanted to celebrate I couldn't, not until my baby was in my arms. He arrived Apr 2014.

Nov 2014 I took a test a very 2 faint lines, I booked to see GP, but I started to bleed. Just like in 2011, GP said it was most likely a miscarriage.

Then start of 2015 we decided to stop my pill. In Jan of 2016 2 faint lines, but again I started bleeding again. My 3rd miscarriage I was heartbroken. but I was blessed in Feb with another pregnancy. I was nervous but I had an early scan and there was our peanut. 2 weeks later another scan and heartbeat. In October 2016 our little girl arrived safely.
I feel blessed every day to have my babies. I had lots of issues in pregnancy but I'm proof that DREAMS DO COME TRUE.

There is an association with women with Endometriosis having fertility issues they don't know why, and there is no link between the stage of endometriosis and ability to conceive.
It's known a large group of women who had been struggling to conceive then have surgery to remove endo, scar tissue adhesions and cyst find it easier to conceive in a short time afterwards. But they don't know why this happens. Once pregnant most women report some pain for short time in early pregnancy but things settle and pregnancy runs as normal after this.

Adenomyosis also causes fertility issues and can have a complication during pregnancy such as miscarriages, smaller babies and pre-term babies.

If you're struggling to conceive or worried about this then please talk to your doctor.

If you're trying to conceive I wish you all best 

I have seen a lot of gynaecology consultants that either think they know my body better than I do or tell me I don't have endometriosis. I even had a gynae doctor say I was making his job harder. (Because I can't have most treatments due to the other conditions I have).
This has happened too often and from 2010 till 2016 I avoided gynae because I have a big lack of trust.

Gynae wards can be hard, my most recent visit, for a burst cyst, was tough. The ward has every woman with any things gynae related, all ages and stages of life. They try to separate but not always possible. The older ladies tend to be at one end and the early pregnancy at the other. When I was there for my burst cyst I was bloated and got asked how far along I was. I just about held it together and explained why I was in. But inside I wanted to cry.

I feel that although primarily endometriosis is a gynaecological condition. It's also a multi-system whole body condition. It can grow anywhere in the whole body. The symptoms can affect the whole body. Headaches, tired, aches in joints, swollen abdomen (endobelly), nausea, vomiting, painful bowel movements, pain urinating, pain before during and after sex. And many many more symptoms.

Heat is our biggest friend and support wether it's hot water bottles, electric heat pads, or wheat bag.
sometimes a hot bath or shower can help too. Although I prefer heat pads as I curl up when in lots of pain and cramps.

You must be careful not to burn yourself with heat pads

Sometimes I like to heat my bed before I get in it too as if I get cold I definitely feel worse.

I suffer with insomnia due to pain, stress, anxiety and depression.

It takes me ages to fall asleep and when I do fall asleep I often wake in the night. When I wake in the morning I feel like I haven't slept at all. I feel like I could nap but I don't have the time. Some days or times are harder than others.

I often find that my biggest issue that causes insomnia is my mind. My mind seems to think bedtime is thinking must worry about everything time. My brain goes WHAT IF?
I have tried aromatherapy, massage and relaxation and none of it was helping. I made myself a weighted blanket this did help a bit I still wake as often as before. But fall asleep when I wait quicker.

I also find doing something creative helps quiet my mind sometimes I write poems draw pictures or paint.

Insomnia is a sleep disorder that is where people find it difficult to fall asleep and/or stay asleep.
The average adult needs between 7 to 9 hours sleep a night.

Some tips the NHS give are *Go to sleep and wake at the same time every day.
*Relax at least 1 hour before bed.
*Make sure your bedroom is dark and quiet. *Don't use digital devices or TV just before bed the light wave in these devices wake you up more. 

Most people who have a chronic illness have experienced judgement. It's the judgement If we need meds, surgery, or even have an illness. Not all illnesses can be seen. I wish I could teach the world not judge others.
I wish people would ask questions about my illnesses rather than make judgements that are not true.

I have had lots of comments about my chronic illnesses.
*It's just a bad period
*I get cramps too it's not that bad
*You get bowel issues because of your diet change your diet.
*Why do you need those meds it's just a rash
*You don't look ill
*It can't be that bad you alway seem fine
*You just need to think positive and you will get better
These are just a few of the things I have been told by people. I think if people experienced what we do for even one day then they might be less inclined to judge so quickly.

Then there is the judgement we get from the doctor's
Dr - have you taken the meds
Me - yes they didn't help
Dr - but you took all the dose correctly
Me - yes they didn't help
Dr - you must not have taken them for long enough. Try them again I will see you again in 6 months
Why do doctors assume we have either not taken meds correctly rather than that the meds don't work.

Me - my endo is back
Dr - you don't have endo
Me - I have had it removed twice
Dr - you don't have endo you just have heavy periods
Me - it's in my notes please I need help the pain is worse
Dr - (reads notes) yes you did but there is nothing I can do you just need to take painkillers regularly
Me - I can't take most pain meds I need help (start crying)
Dr - have you seen a councillor to help with your emotions.
Why they think our symptoms are because our mind has created them or can mind has created them or can be fixed with counselling.
It's NOT IN MY HEAD

I think one of the most important tools we can arm our selves with is knowledge.

Knowledge of our illnesses what it is, and how it can affect us, what treatments are available.

I have found this is so important as my urticaria means I can't have some treatments that the doctors want to give me for my endometriosis. If I didn't know about both illnesses and impacts on each other I could have ended up very sick.

'any fool can know. The point is to understand' Albert Einstein

I have had moments when seeing my GP and they have either known very little or nothing about my illnesses and I have had to educate about these conditions.

'the greatest enemy of knowledge is not ignorance, it's the illusion of knowledge' David J Boorstin 

The biggest problem is a doctor who has little knowledge of illness but because they are a doctor they believe they know the condition better than the person who experiences it.

If we are powered with knowledge as best we can we can better fight for the best treatment for ourselves

For information about endometriosis I recommend Endometriosis - the experts guide to treat, manage and live well with your symptoms by www.endometriosis-uk.org

I often feel lonely but for many reasons.

I feel lonely because sometimes people don't understand quite what it's like living with chronic illnesses.

It can feel lonely when you don't leave your house for days because your unwell. Especially when people say "oh your unwell again!"

Sometimes even though others in the world are going through what you are it can still feel really lonely. Like your the only one.
Especially when people treat your illness as a taboo and try not to talk about it like it's dirty.

Because of this, u spent the first 10years after diagnosis on my own. I didn't know anyone with endometriosis and had never heard of it. When I tried to talk about it people got uncomfortable and would change the subject. So I kept it to myself and felt really lonely. I have now found my voice and I don't want anyone to ever feel lonely. 

I have had 3 miscarriages each one was emotional and each took a part of my heart with them.
Miscarriage much like talking about periods is still considered a taboo. People don't know. What to say or say the wrong thing. Comments like "it wasn't meant to be" "you will fall pregnant again" miscarriage are not just a part of trying for a baby it shouldn't happen but for some women it does. Doesn't make it easier though.

These are not easy things to hear when what your going through is a loss. The first one I ever had I didn't tell anyone but my husband for years I kept it a secret. This made it harder to deal with no one knew to understand why I was sad and distant.

Even though I had 3 miscarriages I have been really blessed with two beautiful miracle rainbow babies, but I will never forget.

There are no real words that can make you feel better when this happens but a friend to listen too you can help.
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Research in Scotland of 15,000 women found endometriosis increased risk of Miscarriage by 76%. Women also have a higher risk of ectopic pregnancy. Also, have a higher risk of premature babies and the need for C-section a
.
If you have any concerns about miscarriage, falling pregnant, then please talk to your doctor.

Nausea seems to be a symptom I am dealing with more and more.

It used to be that I got nausea when my pain was really bad, some days the nausea is so bad u can't eat and just want to be sick, sometimes it's so bad it does make me sick.

But now I get it if my pain level is high but also whenever I eat. It's not a large meal that causes it but any meal bigger than a snack.
Nausea happens any time of day or night. Nothing seems to help this feeling I have to just wait for it to pass.

I have had 11 surgeries. For tonsillectomy, appendectomy, hernia repair, foot surgeries (they now think linked to possible CMT,) wrist surgeries and Endometriosis.

Surgery is hard and takes longer to heal on the inside than it does on the outside. 
Each time I have had endometriosis surgery it was ablation, not excision. after the healing time, I did feel a bit better, but each time after a year my pain came back and worse than before.
I am currently awaiting a diagnostic lap to find out how bad my endo. My consultant needs to know if I need bowel or urology consultants present when I have my hysterectomy. So know that is a second surgery awaiting me in the future.
Endometriosis is often diagnosed after a laparoscopy surgery. (Though sometimes can be diagnosed through scans.) .
The condition is also managed through surgery too. There are two main types of surgery for Endometriosis Ablation and excision.
The simplest way I can think to explain the difference is to image endo is a weed.

Ablation burns the top of the weed, leaving the root to regrow (does not mean it will always grow back) this technique is quicker to heal from and leaves less scar tissue.

Excision digs out the whole weed (does not mean it won't grow back) this technique takes longer to heal from and can leave more scar tissue.

There are pros and cons to both and chose between which is best for a patient. Has a lot to do with their age, do they want children and what organs is the endo on.

This is not a medical opinion please consult your doctor and talk to them about your options.

I have pain in my feet when I walk too much, due to surgery on both of them. I have pain in my wrist every day to different amounts depending on how much I use it, due to 4 surgeries one has gone very wrong and did more damage. Then there is the daily pain from endometriosis.

On a good day I have a constant dull ache, and constant pulling whenever I move. This pain gets worse as the day goes on.

My bad days are almost unbearable, feeling like someone is pulling all my organs apart while crushing them too. Pain that travels all over my whole body and makes movement difficult. My brain does not function well at all.

I can't take ibuprofen due to urticaria, cosine makes me throw up constantly. And stronger meds while they take only the edge of the pain. They leave me unable to do day to day activities due to side effects (this means I can't take them while looking after my kids).

Pain changes who you are and how you live your life. Of all the symptoms of my illnesses, pain is the biggest and one of the hardest to manage.
I have seen pain specialists and none have been able to find something that helps me, but I know my urticaria makes it harder. People who have found CBD oil often suggest this to me. But I can't take it as it has known interactions with the meds I'm on for my urticaria. 

I have found whenever I have an appointment with a doctor I go in with a list of questions. What they plan to do? How will this affect me? What does the future hold? What side effects will this med give me? I make notes during the appointment too.
I do this as I often forget what I wanted to ask when I enter the room. Because I get so nervous. Then if I don't write what they say to me I often forget what they said because I can get emotional.

Being prepared means I get all the knowledge I need to make a decision about my treatment. I don't forget anything and feel ready to get ready for future appointments. 

I think this is one of the most important tools for anyone with a chronic illness. Don't be afraid to rest, because our bodies are going through so much we have to know when to take it easy and let our bodies rest.

I know that when I have had a busy day, especially a very active one. I need to rest the next day. It's important to listen to your body and rest when it tells you too.

But I know sometimes I'm my own worst enemy and don't always rest then get worse because I didn't take it easy. Often causing worse endo flares and urticaria attacks.

After the surgery is an important time to rest. You must remember that the inside of your body takes longer to heal from that on the outside. Just because wounds are healed does not mean insides are. Rest!

If you suffer from a chronic illness then you need support. People who understand and care for those who are ill.
I have my husband who looks after me when I have a bad day, and family. But I don't like to ask for help. I try to cope on my own as best I can.

Then there is the support of those I find on here. People who are going through a similar journey and understand what I'm going through and how I feel.

Without this support, I used to feel very lonely and I'm so glad I have support and can support others too.

If you ever feel lost or lonely please go to www.endometriosis-uk.org for support groups and online support.

Treating endometriosis is hard as every woman reacts to and needs different treatments.

I have tried so many different pills and Mirena coil twice none have helped. Surgery has helped but long term it grows back again. 
I was told having a baby was the only cure I have had two now and definitely not a cure and is worse than before.

Recently they had a set plan that they said all women with endo had to have before surgery. First was pills, the Mirena coil then menopause before surgery. I said pills don't work coil hasn't worked in past. They then said I had to try the coil then menopause or no surgery. I explained I couldn't have menopause because of dangerous of setting off urticaria. He just said again you must try it or you can't have surgery. This is wrong no one should have to follow a set treatment plan we are all individuals.

My urticaria has been hard. The first specialist put me on steroids whenever I had a reaction. When they didn't get better and I saw a second specialist who said this was a really bad long term. And I needed lots of very strong antihistamines and more than one type too. I was to only use steroids when reactions get worse.
I wish that doctors treated patients as individuals. the best thing you can do is be as knowledgeable about your conditions and treatments available and the pros and cons of these. If you really don't want a treatment you don't have to have one.

I have suffered on and off for years but I was only diagnosed at the start of the year when I started getting reactions every other week, some so bad that I ended up in resus.
Through tests, they decided I had chronic spontaneous urticaria. My reactions are due to my body producing too much histemine when under physical or emotional stress. (Endometriosis and adenomyosis definitely make my reactions worse.)

I am now on a few meds to stop my body overproducing histamines, but the downside to this is they seem to have weakened my immune system so now get more colds and bugs than I usually do.

My urticaria makes treating my other conditions. The doctor's worry that giving me an injection of the hormone could set off a bad urticaria reaction. Problem is the injections can't be taken away and mean it could be difficult to stop a reaction. It means some non-medical treatments are also unavailable. CBD oil which helps so many women can have interactions with the drugs I'm on for urticaria, so I can't even try it.

If you have any allergic reaction keep a diary of what you eat, do, as well as the level of reaction. And go to a specialist for further testing.

A part of my body I have got to know well especially during my period when I sometimes feel like I'm spending most of my time in the bathroom.

My vagina is unhappy though, I get pain from my endometriosis most days it's like a dull ache most days, but goes up to a stabbing pain the more I do. I am in pain every day.

I have pain from the scars of giving birth to my kids. Mainly from my son, I knew it was bad when the midwife said "I need to get a surgeon" took an hour and a half to stitch me back together. My scars hurt and I feel that my vagina now looks strange as both labias are third torn off.

Because of both of these sex is painful and I don't enjoy it like I used to. I found this post hard as I don't often talk about this part of my life. Too much of a taboo for most people, so I feel shut down by others, so keep it to myself. 

I have always been on the curvier side since I started my periods. but after kids my endo got worse, out of control and so did my weight I got to UK size 18.

I had for a long time tried to lose weight, But struggled for ages. In 2017 I joined slimming world lost 4.5st and got down to a size 10. Then my urticaria got worse. Taking lost of different meds meant I gained 2 stone in the last year. I have been trying to lose for the last 9 weeks and have lost 16.5lb. only 9.5lb to get back to target.

I feel like weight and hormone issues run side by side. Irregular Hormones cause weight issues and weight issues add to hormone issues.
The other issue with trying to maintain weight with endo/adeno. Is bloating I found some weeks if I was having a flare up it looked like I had gained weight when I hadn't. This can leave you feeling disheartened and I found more likely to end up binge eating.

Well x-ray, ultrasound, MRI and any other scan picture type test.

Sometimes we go through all of these and still don't get the full picture of what's going on in our bodies.
For me, it took having my appendix out to get diagnosed with endometriosis. But since my endo has got worse I have had a scan and none have shown the full picture. Each just gives a bit more of the picture.

The ultrasound showed my ovary was attached to womb but no other endo.

Then I had MRI which showed cysts on ovaries womb attached to multiple organs and places.

But the consultant thinks it's worse than even the MRI shows due to my symptoms.

Recently had ultrasounds to check liver gallbladder and stomach as I have been getting so much pain they were worried I had a different issue. Alongside blood tests, they have said there are no issues with these organs so most likely endometriosis in these areas. So will have to wait till next lap to get it confirmed completely.

While I get frustrated that scans don't show the full picture I'm glad they check to make sure they are not saying something is endo when it could be something else. I often worry I put everything down to endo and dismiss and don't go to the doctor and could miss something.

If you have a chronic illness and have a new pain don't assume it's your chronic illness get it checked.

I wish I had known about Endometriosis when I was younger. If it was taught like you learn about bones and digestive systems, how nerves work, and some other illnesses.

If I had heard of endometriosis I would have known that my periods were not normal. I would have pushed my doctor to send me to a consultant to get help. So many times my doctor said, "this is normal you just need to get used to it."

I wouldn't have waited 7 years and only got diagnosed by chance, all because I got appendicitis.
I might have understood all my options for treatment and could have better advocated for my own treatment.

I hope in time that young girls learn about endometriosis and other illnesses so they know when something is wrong with their bodies. Periods. Should not be a dirty subject.

For more information on this subject go to www.endometriosis-uk.org and check out the #whatiwishilearned

No journey is a straight line, we all have different paths to take and no two are the same. Different bumps highs and lows.

We can't compare our journeys, and shouldn't compare yourself to others. What your going through is bad for you. Someone else's experience does not make yours less valid.

Share your experiences and what works for you and what doesn't. But don't expect others to follow your route. What works for you if it is surgery, medication, natural remedies.
I really hope that you have enjoyed my a to z of chronic illness and it helps you as much as it's helped me making them.