Where did it start?

So, Tuesday was a wet and cold Autumn day here and whilst binge watching a show about the remotest parts of Alaska, It got me thinking. What do women do with out access to a doctor, specialist and pain killers? More specific than that, What did they do before the times of diagnosis? So, my rainy day mission was research added with some more research, hours and hours to compile a list of fun facts and information, I hope you find it as interesting as I do.

More than 170 million women and girls around the world suffer from this disease.

Endometriosis was first reviewed in scientific literature in 1860, by Austrian pathologist Karl Freiherr von Rokitansky.  He referred to the disease in his writings as simply “an adenomyoma” ( tumor).

Medical review history dating back almost 4,000yrs has found evidence of endo like symptoms. Treatments involving leeches, straight-jackets, caustic chemical douches, being hung upside down, surgical fatalities, even being accused of demonic possession and killed – all because their crippling yet invisible pain misunderstood by everyone.

In 1927, endometriosis was formally described by Dr John Sampson, when he presented a paper identifying 13 patients in whom the presence of endometrial tissue was observed during abdominal surgery although The “Encyclopaedia of Medical History” published in 1985 did not have a mention for endometriosis.

The first references to endometriosis-associated symptoms are found in the Ebers Papyrus (Papyrus Ebers, is an Egyptian medical papyrus of herbal knowledge dating to c. 1550 BC.), in which a treatment for a “painful disorder of menstruation” is described.

13th Century-Young unmarried women it was sometimes refereed to “disease of the virgins”

13th Century-The concept was that the uterus was not a regular organ, but rather a live animal, hungry for motherhood.

Pain was normally dealt with using opiates during the middle ages.

I have complied some of my favorite and wacky facts above, I can’t get over some of the things women were subjected to but I am so glad they paved the way for women today. I spent hours trawling through journal articles and medical history. If you ever get a spare day ( I know, I’m funny, right?!) Have a stroll down the road of confusing medical research. Incredible what can be found!

Recovery

Today was one of those hard days. I struggled to walk through the house and spent my whole day on painkillers because I wasn’t coping. This post will be short and sweet!

When I returned from surgery I struggled to walk. I struggled to eat and all I wanted to do was sleep my week out.

During a laparoscopy your bowel is blown up with a gas. That gas is the only pain that occupies your mind for the first few days. The gas leaving my body consisted of every time I sat up my shoulders and my neck consisted of a burning /aching pain. This process was more uncomfortable than dealing with healing from the incisions.

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Four days I was on the couch not being able to shower. Four days! Moving between the couch and the bedroom was impossible without my partners help. He moved everything he could into my reach for easy access with my limited movement and did everything in his power keep me entertained while I recovered.

The time between surgery and going back to work was roughly a week and a half. The pain subsided after the week but I was still extremely uncomfortable.

Two weeks later when I was able to move some what pain free. I was then able met with my specialist for my results. My Mirena was still settling in and causing havoc. It is always a gamble putting something so foreign into your body and expecting your body to just keep on going like it’s not there. Some women go into shock after having the Mirena inserted. Just because I had avoided the shock factor does not mean that the Mirena was going to work with my body and not against it.

My endometriosis results were my happy medium. The bad news? There was some there, and it had started making it’s way towards my bowel. The good news? What a relief it was. I wasn’t crazy. All those time’s I tried to tell  people that there was something wrong, I was right. They removed what endometriosis was there only to come across ovarian cysts.

Most women will have ovarian cyst’s come and go during their lifetime without them ever effecting day to day life.

Of course mine is different, If only I knew that what I knew now! These cysts come and go as they please, causing me pain in every aspect of their sometimes quick lives. Also makes the chances of children ever harder for the future.

I am so interested to hear other stories! I would love to know yours!

 

 

Surgery

Wanna hear something funny? I am petrified of needles. Tattoo guns? No problem. Piercing needle? Didn’t even see or feel it… but try to give me a needle in the vein…and I want to RUN!

The night before my surgery was an exhausting one, I was starving from having to fast and I was petrified of that needle. I couldn’t sleep over the sound of my stomach grumbling nor could I find enough peace to be able to.

That morning, my mother picked me up to hold my hand ( If anyone ever tells you that one day you won’t need your mum, they’re lying. Can’t be trusted.)

Once I was bought through to the prep room ( Mum in tow), I tried to explain to the nurse how scared I was of needles and tried to negotiate how much time I would have out of the saddle. She laughed at me and apparently missed the serious tone in my voice.

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When my anesthetist came in, again, I explained my fear of needles and he assured me that he will give me the smallest needle he can, the one he gives to toddlers. I felt better until as the needle hit my skin, he winked at my mother. MY MOTHER. The person i bought to protect me, didn’t. ( I was secretly thankful of their lies)

All I then remember is getting wheeled into the operating room, I remember talking about the stunning view from the 6th floor on that rainy day. Then nothing but the best damn sleep I had experienced in weeks!

Waking up was a different story. I couldn’t keep anything down, the hunger I had felt was now replaced with the constant nauseous feeling and I just wanted to go home.

I was informed my mum was on her way to collect her broken little hero and tried to sit up to get dressed. WORST idea! Because they pump a gas into your bowel area, the gas left my body through my shoulders. It felt like I was being picked up by my shoulders and suspended every time I sat up.

You can imagine the car ride home. Trying to stay as laid down as I much as I could possibly do. Mum could not have said sorry anymore over every bump.

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If only I knew that my recovery had just started, and I didn’t even know what or if they had found what they went looking for.

Ever had a laparoscopy? I would love to hear your stories!

The New Help

You know, after roughly 8 years since diagnosis, I still cant determine what part I hate the most. The irregular bleeding is just an inconvenience and frustrating, not to mention the pain train it brings with it. At the end of the day, they all go hand- in- hand.

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My first phone call with the specialists office was a daunting one. Especially when I was informed my referral wasn’t received and the specialist wasn’t taking on new patients. My thought process at that point was along the lines of “I don’t know if I can be bothered with this anymore, Hopefully my body just gets over it”

Some where in my voice must had been a level of desperation I was un aware of. I was asked if I would mind being on hold for a moment, thinking a minute or two. Five minutes rolled by and I wondered if i had been forgotten.

The word forgotten should not have been in my vocabulary that day. That lady on the phone could just hung up after informing me there were currently no new patients, but she didn’t. She went and asked the specialist if she would take on one more patient, a desperate girl just looking for answers about her body. ( Because puberty isn’t confusing enough for anyone).

I was given an appointment in two weeks time, and here I was thinking it would at least a month wait. My walk up to my specialists office was an exciting one, I had no idea what to expect but for the first time I felt hope. I felt like someone was going to help me this time.

Our talk seemed short, but proactive, can you really ask for much more? I don’t believe so. First appointment was the appointment we discussed everything else I had been on in my short menstrual life to try help.

We decided at the time that enough was enough for my body, my best chance was a Laparoscopy. Key hole surgery to have a look at what we were dealing with, to remove what or any endometriosis  was there and to insert a Mirena.

I would love to hear what worked for you, weather it be the pill, depo needle, the Mirena. I would also love to hear your stories about what didn’t work for you. Leave me a comment!

My Endometriosis Journey

Ever felt like a chainsaw is ripping through your cervix? You feel me?

Ah, Memory lane, Great place!

There is still such a stigma in regards to talking about our periods, why? It’s completely normal and if not talked about, Where will awareness come from?

There is nothing more frustrating than “You don’t look sick” comments, “Oh, fourth sickie this month?” “Every girl gets cramps, what makes you such a sook you have to take time off?”. There are thousand more comments that come with the territory. Ever tried to explain it to a male boss? Awkward!

I still remember my lead-up to my diagnosis. I had never had painful periods nor had I ever have irregular bleeding. My first doctors appointment I was told that “maybe as i get older they’re just becoming more painful, completely normal” As I tried contraceptive after contraceptive to try manage this bleeding, I repeatedly came up short. How frustrating this is. I felt like I was screaming, there is something wrong with my body and no one would listen, dead-end after dead-end, doctor after doctor.

I had almost given up hope, faced with the thought I would forever have these problems for the rest of my menstruating life. I still remember the day I walked into a little clinic in my home town, seeing a doctor for the first time my mother had recommended for young girls with problems. I was still apprehensive.

I had never even heard of endometriosis. I recall the doctor drawing me pictures as to what it is and how it works. My ears rang and I could see the fear sweep across my face in her eyes as she mentioned I may not be able to conceive, not to mention there was no “cure” and everything was trial and error.

There is nothing more enlightening than someone who will listen. Someone who instead of sweeping you out the door of their clinic, wants to help a young, confused girl with crippling pain.

Can you remember your first time being told? or a family members? Maybe some of those comments echo in your head every time? I would love to hear your stories.

 

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