Thursday, March 15, 2018

Continuing on with the Endo Photo Challenge for 2018

I haven't been able to update the blog because I've been going through a horrible flare up with my Endo/Adeno and other chronic issues. I've just about managed not to fall too far behind by updating my Instagram (thank the gods for smartphones and apps)

So here are a couple of recent topics we've covered with regard to Endometriosis Awareness.

Day 11 was about the myths we've all heard about Endo.
#theendophotochallenge2018

 Myths that I've come across where mainly from Doctors in my case, about Endometriosis.

Most commonly I've been told,

Pregnancy will cure you, surgery will cure you, a hysterectomy will cure you.

Side bar; There is no cure for Endometriosis

While some Women's symptoms ease off whilst pregnant it doesn't mean they're cured, same goes for surgery. You might feel relief for a time but then find your symptoms returning.

Finally a hysterectomy does not cure Endo. This has to be one of the biggest myths floating around.

Do your own research and get second opinions if necessary. Don't drastically change your life by bringing a child into the world purely for the sake of chasing a cure.
Don't have a hysterectomy or radical surgery if you're trying to preserve your fertility, if the Endo is outside the womb because you won't be cured.
You MAY find relief but you MAY NOT.

It's a gamble that we shouldn't have to take with our bodies.




I also have psoriasis, bruising for no reason or extremely easily bruised which I've been told is from Anaemia. I have been a chronic insomniac since around age 20, so 12 years with that and believe me I've tried and continue to try everything to crack it, from alternative remedies like acupuncture, reflexology, herbs to prescription medication. Whoever coined the term "painsomnia" had it totally right.  I also suffer from shoulder and neck pain. 






Day 14 & 15 of #theendophotochallenge2018

Positive side to Endo & what Endo has taught me. 
The positive side;
I would have to go with making me stronger as a person. I have learned and listened to my body all along this road. But it took a while for me to actually question my Dr. 's to ask for second opinions and not take their sometimes dismissive way of speaking to me.

I've left my home country Ireland 🇮🇪 and gone to 🇫🇷 to have cutting edge surgery to try reduce my pain and symptoms and I flew home solo after only a few days recovery. That was the strongest thing regarding surgery I've ever had to do alone but I got through it.

I'll keep fighting for myself and spreading as much awareness about this awful invisible illness as I can.

What Endo taught me;

Being diagnosed also taught me who my true friends where as a lot walked away because I would be too weak or have to cancel plans and that again opened my eyes and has made me who I am today.

I love the ones who stayed, I love my Mum so much for being there the whole time, fighting for me since age 11 because she had gone through it and knew the symptoms. She was told that she was wishing it on me, that I just had heavy periods and very bad pain, even when I would miss school every month because of my period and collapse our G.P still wouldn't listen or give a referral. She daughter hard until we got that referral and through a diagnostic Laparoscopy it was finally discovered that I had severe Stage IV Endometriosis. It took us 7 years to get that diagnosis. 7 years where it went untreated. That woman will forever be my hero. She stood up for me at a time I couldn't and has been with me through every treatment and surgery bar one.

She'll just say that's a Mum's job but she deserves the recognition for it considering she has chronic issues of her own she deals with every single day. 

So listen to your body, keep a journal and don't ever be afraid to speak up for yourself and ask questions, do research. It's your body. You do have a say. 

(Went slightly off topic there 🙃)  

For more follow me Instagram and Facebook @isthereanendtoendo and on Instagram @lifeofandiealessandra where I'm posting my challenge photos.




Tuesday, March 6, 2018

Day 6 of Endometriosis Awareness Month

Day 6 of #theendophotochallenge2018


Years with Endo.

I've been diagnosed through surgery with Stage IV Endometriosis for almost 15 years now.

However, I've been suffering for 23 years with strong symptoms and have been dismissed along the way, at one point the professionals had me believing that the pain was all "in my head".



Even after I was diagnosed people still didn't believe how badly I was suffering bar one and she knows who she is. She has stuck beside me through every treatment decision, fought hard for Doctors to take me seriously and ultimately get me my diagnosis.

She has been through every up and down with me, talking surgical and treatment options over with me time and time again to make sure that I could live with my choices as over the years the sacrifices have just gotten bigger and not necessarily for the best. But up or down, stormy or calm she's always been there when others have scoffed or simply walked away because my diagnosis was just "too much for them to handle".

You need a support system with this disease, wherever you can find it, but you need one nonetheless.

Stay positive and I'll see you tomorrow for the next challenge.

Andie

Monday, March 5, 2018

Day 5 of Endometriosis Awareness



Day 5 of #theendophotochallenge2018 on Instagram



Listed 👆 are my medications/treatments to date (that I can recall) for the pat 18 years.

Let me tell you the struggle is all to real when you have an invisible illness.

People just don't see past you looking like a regular walking/talking being. They don't see the scars, the pain behind the masks we wear to try look "normal". No one sees the sacrifices we make along the way or allow us to grieve for the girls and women we used to be before Endo.

Well no more 🎭. This is our chance to spread awareness and shout/scream, let our 176 million voices be heard.

#endometriosisawareness #endoflare#endopain #fightlikeagirl #endoaware#ovulation #ovarypain #bowelresection#surgeries #painlevelhigh#1outof10doesntworkforme #1in10#176millionwomen #weneedacure#spoonie #chronicpain #chronicillness#invisibleillness #stageivendo #staystrong#positivethinking #mentalhealth#positivevibes #powerofpositivity #healing#respect #bekind #friendship

Day 4 of Endometriosis Awareness

Day 4 #theendophotochallenge2018 on Instagram
Diagnosis;

After seven years of suffering heavy periods, fainting spells and numerous days off from school I was finally diagnosed at age 18 through surgery, laporscopacally, with #stageivendo.

Even though I have a very strong family history of Endometriosis my G.P kept dismissing even the idea of me having it.

I started showing symptoms at age 11. Don't let this happen to your daughter /sister/significant other/family members.

#endometriosisawareness #endoaware#1in10 #176millionwomen #weneedacure#spoonie #chronicpain #chronicillness#invisibleillness #endopain#endosymptoms #endodiagnosis
#chroniclife #endolife

Day 3 of Endometriosis Awareness Month

  • Day 3 of #theendophotochallenge2018

    Symptoms;


    Severe Pain
    Anxiety
    Sciatica 
    Constipation
    Diarrhoea
    Vomiting
    Collapsing/Dizziness
    Hypertension 
    Migraines 
    Scar tissue pulling/pain/itching
    Deep vaginal pain
    Blood clots/Heavy bleeding 
    Infertility
    Irregular cycle
    Aneamia(low iron)
    Contraction pain (also related to Adenomyosis) 
    Pain in/on;

    Pelvis, back, lower back, ovaries, shoulders, ribs, intercostal, behind eyes from migraines, leg cramps, sciatica, bowels, uterine contractions, bladder pain, cysts rupturing on ovaries, passing clots, pain during sex/bowel movements/urination.

    #endometriosisawareness #endoflare#endopain #fightlikeagirl #endoaware#ovulation #ovarypain #bowelresection#surgeries #painlevelhigh#1outof10doesntworkforme #1in10#176millionwomen #weneedacure#spoonie #chronicpain #chronicillness#invisibleillness #stageivendo #staystrong#positivethinking #mentalhealth#positivevibes #powerofpositivity #healing#respect #bekind #friendship#mentalhealthawareness

Friday, March 2, 2018

What is Endometriosis? (March 2018)







Stand up for yourself. You have 176 million Sister's with you in this. Don't allow anyone to take your control away or kick out at your comfort zone. 
If you can't do something right now because of this invisible illness then tell the person/people who are expecting too much from you.

Knowledge is our best weapon. Ignorance breeds intolerance to our situation.

I'm grateful to have my person, the one I can talk to about my limitations and she doesn't guilt trip me because she two went through it. But touch wood she was able to carry two pregnancies full term before having a hysterectomy at 32. @firequeen7 
I've had to resort to an endometrial ablation, Dec 2017,of my uterus to try control the clots and haemorrhaging. This now means I will never carry my own child. 
Without the unconditional support for the past 21 almost 22 years  I honestly don't know where I'd be. I've gone through some really dark times due to this illness and as we know there is no cure.

We need to do our part now matter how big or small in order to educate others as much as we can about Endo & Adeno, PCOS, FBD, Fibroids, cysts... Keep a diary and if something looks out of the ordinary such as bleeding longer than a week please contact your primary health care.

Apologies for the late rant. It's been a tough few months. 
Big hugs and love you you guys. If anyone needs/wants to discuss this further DM me please.
#chronicillness #chronicpain
#endometriosisawareness #endoflare #endopain #fightlikeagirl #endoaware #adenomyosis #Adenoawareness #surgery #ablation #laparotomy #excision #decapeptyl #laparoscopy #bowelresection #hysterectomyforadeno #anxiety
#choices #endosucks #bitemeendo #fuckthispain #constantpainisnotnirmal

#endomarch2018

Are you participating in your city? My country 🇮🇪 doesn't march for Endo which is disappointing. Although to my knowledge the national charity EAI have turned up to the women's mini marathon and wear their shirts to promote themselves/endo. 
Research shows 1 in 10 women have some form of Endo. I don't have stats for Adeno. That 176 million women worldwide and no cure. Shocking, in 2018 to still be fighting this.

#1in10 #176millionwomen #fightlikeagirl💪

Day 1 & 2 of awareness month

I am 1 in 10 women #1in10 #176millionwomen




March 01st 2018 is the start of #endometriosisawarenessmonth and the #theendophotochallenge2018 to raise awareness.

I am 1 in 10 women who have this invisible disease. I am also 1 out of 176 million globally. I've been living with my diagnosis since age 18 but my symptoms started right around 11 years old.

My Mum had it too as did all of her Sister's and my Maternal Grandmother. Nearly all had hysterectomies based on Doctors advice back then that it would "cure" them.
I have Stage IV Endometriosis, which means it has spread beyond my womb and sticks to other organs, in my case my bowel, bladder and ovaries.

It effects every aspect of my daily life. Just because I look fine doesn't mean that I am.
Spread love, hope and support please. 💛💛💛💛💛💛💛💛 I also have Adenomyosis which is Endo that grows in the muscular walls of the womb. The only way to rid my body of this is a hysterectomy.
💜💜💜💜💜💜💜💜💜💜💜 However a hysterectomy is NOT a cure for Endometriosis. Neither is PREGNANCY.

THERE IS NO CURE!
#endochallenge #endoaware #endolife #awareness #1in10 #176millionwomen #marchisendoawarenessmonth #notjustabadperiod #EducateYourself #spreadawareness #infertility #ovulation #stageivendo #chronicillness #invisibleillness #endopain #endosymptoms #supporteachother #dontbeignorant #askmeaboutmyendo






Day 2 of #theendophotochallenge2018





#1in10 #theendophotochallenge2018 👆 Barely touches on how Endometriosis affects my daily life.
Most of the time I am restricted to my house because of the daily pain. The pain meds make me drowsy and sleeping when I can, as I'm a chronic insomniac, is the only way to escape the pain for a short while.

Endo is not just confined to the womb. It can and does grow outside, sticking to other organs like the appendix, gallbladder, bowels, bladder and sometimes the lungs.

It can cause Infertility which can be and is heartbreaking. It forces you to cancel plans because there is no predicting the flares and honestly I've lost count of the friends I've lost along the way due to my condition. Even certain members of my family never understood what I was going through. One actually thought that I was getting more attention when I was diagnosed and got jealous. It can destroy relationships. There is no end to the suffering.
The illness has been compared by my specialist in August 2017 to Cancer. Others have compared the pain to labour. We need more understanding about our invisible condition. If you said that you had Cancer you'd get more help and support than when you tell people you have Endo and that comes from a lack of knowledge.
We need to shout and scream so young girls can be diagnosed as quickly as possible. We need science to find a treatment that works without throwing us into a false menopause or raising our blood pressure, giving us searing migraines, leg cramps, weight gain, mood swings, black outs etc.

Please educate yourself and if you suspect your daughter, Sister cousin, girlfriend partner or wife may have it get to your G.P and get the ball rolling.

Ladies, keeping a diary of your cycles proves very useful when going for your consultations.

There are apps out now that make it a lot easier to track your period, mark down how many days, how long or short your cycle is and how bad your pain levels are etc. You'll find them for free in your app store. Android or IPhone.
Spread awareness, hope and support those who need it. 💛💛💛💛💛💛💛💛💛

Sunday, July 13, 2014

A smooth sea never made a skillful sailor.


memegenerator.net

Sleep is overrated right? I did manage to drift off around 3:00 a.m but then woke up just after 4:15 a.m and could not sleep. I had a pillow under my legs as they kept cramping all night. My calves are literally so sore when I'm moving. Even having then elevated my ankles hurt and then the spasms shoot straight up  my calves. Then there's the thigh pain. Literally, a lot of people don't realise the other aches and pains that get triggered when you're having a flare up. My shoulders feel like I have a bag of potatoes strapped to my bag, especially between the shoulder blades. Tender breasts, not to mention a lovely heat rash under them which I'm currently staving off with  Zinc Oxide.

To keep with my promise I made this year below you'll find three photo's of me over the course of this morning. Honestly, I've had a little cry because the pain has just floored me. My back, pelvic area, ovaries, abdomen, just everything is so sore. I'm hoping that this all just means that my body is still regulating itself as I am off treatment at the moment.

Feeling completely overwhelmed 8:00 a.m
Meltdown over. 


Exhausted and fed up 9:15 a.m


Please, I just need a little break 10:43a.m

OK, I had to take a break there. Using my breathing techniques after I had a little outburst. Sometimes, although I try to stay positive in my mind my situation just drowns me so releasing that energy and letting it go rather than bottling it up is the best way I've found to deal when this happens. It's not a regular occurance because I do tend to let things build in my head (which I'm working on) but dealing with it, just recognizing the emotions I feel is a much healthier way of coping.

So I am once again partially horizontal, attempting to study but honestly can't concentrate. Irritated and frustrated but I am reminded time and time again that it's only temporary. Just like a storm this too shall pass.
Meanwhile, I will read, try to nap and hope I feel a bit better later on. Looking forward to seeing my Mum this evening. The weather is looking good enough for a BBQ and of course the World Cup final is on. Mum is up for Germany, Rodney Argentina so that in itself will be entertaining for me.

Summery blue toenails. Cramped and swollen legs elevated now.
My wonderful boyfriend Rodney is starting his holidays today and I'm looking forward to spending some quality time together. I don't care if it rains.

Wishing you all a lovely, restful Sunday. Love to my endo Sisters and thank you for all of your kind words and support.

XxxX



Even the orchid has an Endo face...

pinterst.com

During the night the pain began. Slowly at first, just a small ache. Nothing to moan about. Gradually, the pain increases. I can feel it right down to my ankles which are now swollen. I elevate my legs for a time before attempting to go about my day. I think I manage pretty well, getting study done, some household chores and I even manage to gett my wall art up before I start feeling that overwhelming tiredness. The fatigue appears as if from nowhere, yet I know it's been building. My legs are sore and my ovaries are beginning to pull. It's time to get my water, pillows and a nice cup of tea. I settle in, as comfortable as I can get and manage to write up an assignment.

ladycarehealth.com (I'll let you know if this works for me)

As I am writing this post I am somewhat horizontal, packed up with pillows and cushions to keep my legs elevated (courtesy of Rodney). Dinner has just been made, which I can't even eat because I'm so bloated and uncomfortable there just isn't any appetite there. A movie "Afterlife" (fairly decent) is about to go on before we watch Brazil -v- Holland (I've a soft spot for the Dutch) play for third place in the World Cup, which of course they win.I have taken painkillers of course but we're all used to our usual merrigoround with Endo. Keeping myself calm and trying to remain relaxed is the key for me here so the pain doesn't take hold.

strikerno9.blogspot.com

Hoping to have a BBQ tomorrow, with my Mum coming over to watch the final game of the World Cup with us (Germany -v- Argentina, Ozil -v- Messi,) I've promised Rodney I'll cheer for Argentina although if Ozil does score I will be quite pleased. Let's hope it's a fair and intersting game.

Being completely restless I decided to watch "Cracks" after falling in love with Eva Green as you do when you watch Penny Dreadful.
thegeekiary.com

I must say she's only continued to get better with each role I've seen her in.Yes, I know I'm not really discussing Endo here but one can only attempt to describe pain so much until it becomes upsetting. I found the following on twitter and just had to share it with you lovely ladies.

(twitter.com)

I will wrap this ramble up with a goodnight to you all as the clock approaches 1:00 a.m. Beyond tired now I will head to bed, sit the pillow under my legs and read my latest JD. Robb until sleep comes. 
Till tomorrow, football and hopefully a less painful day.

XxxX