Monday, 28 March 2016

❀ Endometriosis Awareness Month. March 2016 ❀


Endometriosis. The silent, death like disease, that has attacked millions of women. Do you even know what "Endo" is? Do you really care? Well you should.



What is Endometriosis?

Endometriosis (also known as "Endo) is a common condition in which tissue acts like the lining of the womb and is found on the outside of it. However, the tissue can be found pretty much on any organ (ovaries, womb, bladder, belly button, abdomen, bowel.)

"The condition is estimated to affect around 2 million women in the UK. Most of them are diagnosed between the ages of 25 and 40." - NHS.

What are the symptoms of Endo

Symptoms can vary between women. The most common onset is through the menstrual cycle, but this is not always the case.

The most common symptoms include:
❀ Painful periods or heavy periods
❀ Pain in the lower abdomen (tummy), pelvis or lower back
❀ Pain during and after sex
❀ Bleeding between periods
❀ Difficulty in conceiving/Infertility

Other symptoms may include:
❀ Persistent Fatigue
❀ Discomfort when going to the toilet/burning, sharp pains.
Bleeding from your back passage (rectum) or blood in your stools.
coughing blood – (in rare cases when the endometriosis tissue is in the lung)

However, the amount of tissue does not affect the amount of pain you have. You can have a small amount of tissue, but gain more pain than someone who has a large amount of tissue. It all depends on abnormalities.


How is Endometriosis diagnosed?
The causes of endometriosis are not really well known, but there are alot of cases and or theories. The most widely accepted theory is the womb lining doesn't leave the body properly during a period and embeds itself on the organs of the pelvis. This is known as retrograde menstruation.
Endometriosis can be confirmed by surgery called a laparoscopy. This uses general anaesthetic, and you can usually go home the same day.A thin tube with a light on the end (laparoscope) will be passed into your body through a small cut in your skin at your belly button, sometimes on your bikini line too. It has a tiny camera that transmits images to a video monitor so the surgeon can see any endometriosis tissue. During the procedure, a small sample of tissue is taken for testing,and or other surgical instruments can be inserted to treat the endometriosis. 

So why am I writing this blog post? What's the point?

Well I guess I should tell you my story..

September 2014: Aged 16. Just started college, year 12. Everything was normal for the first few weeks, a fresh relationship, and had a brilliant summer. But something didnt feel right. Diagnosed with IBS a few months before, my stomach wasnt really used to certain things still, even with medication. About 3 weeks after starting college, I woke up with uncertain pain in my right side, of the stomach. I thought maybe it's my period? But no, wait, Im on the mini (progesterone only) pill, I cant be on. So I went the toilet, the minute I sat down, I couldnt get back up. Something was seriously wrong. Straight to the GP for me! What an idiot I was. My doctor sent me straight to the hospital with fear of appendicitis.

Got to the hospital and was sent to the surgery ward straight away. Waited over 12 hours without food, drink, just incase I was to go straight into surgery, had various water samples done, blood tests, I was majorly fatigued. Got to 5pm, and they put me in the ward, and stated I wouldn't be getting surgery tonight. Still unable to drink or have food, I waited for my sister and mother to come back with food, clothes etc. Had the "blood clot" needle (God how horrible is it. Already had enough needles in me that day! And my fear just got worse.) Finally 8pm, I could eat, and my family were allowed to stay past the normal time visitors were allowed, with being 16, I was still considered a child on the ward. I was told from 2am, I wasn't allowed to eat, in case I went into surgery in the morning, and possibility of an X-ray. The morning came, and I waited to see the surgeon, I desperately did not want to be there. Surgeons/Doctors came, and told me I needed an IV. Hell no! I refused, I wanted to go home. All my test results came back, it was stated I had a biological reaction to the pill I was on, and that it completely changed my body chemistry, giving me a hormone inbalance. The surgeon, still considering me a child, let me discharge myself, but I was to be referred to a gynaecologist, just in case it was problems down there. I specifically remember my sister saying "I think you have endometriosis, or fibromalygia Amy, Kate (her best friend) has it, and you seem exactly the same."

About a month later, I was put on the combined pill by the gyno. His excuse; "She is too young for anything like endometriosis" "Does she act out for attention much?" "Maybe you could loose some weight? Only a little bit" "Just to see if it helped any symptoms". I was particularly fine on it at first. It helped my periods alot, but the pain just never seem to disperse, as I didn't just get pain during my cycle, but 24/7. It started to affect me greatly. Didn't want to go to college, had relationship disputes, stress stress stress! Finally July 2016. Now 17, I came up with a few infections (water, chest, throat, etc) and was put on millions of anti-biotics. I was slowly deteriorating. Pain was becoming worse, and I didnt want to leave my bed. I was depressed. September 2016, exactly the same day I was in a year before, I was back at the Womens only hospital in my area. How strange right? They told me, its a possibility of endometriosis. How wonderful! My sister sitting next to me, as if she was a fully trained nurse with that smirk on her face. I was due to see the gyno the next month. October 2016; The gyno puts me on the depo provera injection, said it had "proven" to help symptoms of endometriosis. How wrong he was again! My symptoms seemed to be getting worse. I had various reactions to the injection. Rashes, Aggression, Irregular periods, Depression. My GP even described/diagnosed me as having "Depression Associated with Physical Illness" and had to write to my GP, to extend how impatient he was with him, how we all were, as I was constantly at my doctors, needing painkillers, help. It was exhausting.

February 2016. 18 years old. Finally, we're at this point in life. I saw my gyno after my second injection of depo, as promised. I explained to him, how fed up I was, how I just wanted it all to just finish. Please. I guess, I finally got round to him. "I can see the pain in your face Amy-Lou" "Im so sorry". He told me, he wanted me to continue depo, and put me in for a "pre-op" for a laparascopy. He told me, all I could do was pray that they find something. Literally. Wanted me to pray. Told me to try and stick to codeine for pain relief, and try home remedies, anything that'll put me at ease. 

March 2016; Booked in for surgery on the 21st April 2016. Although, I dont know if I have Endometriosis (or possible Fibromalygia, but guess we'll save that for another time), everyone seems persistent I have it. And if I don't, this blog post was still for something. Endometriosis is so under-rated. I bet some of you reading this, had no awareness of it. Or didn't want to know what it is. Well let me tell you, I've met some lovely women who have gone through it all already. And they're the bravest women I have ever talked to, because myself, I cant cope with this pain, and if it isn't Endo, how do they do it with Endo? 

Either way, this "disease" should be known. Should be made aware of. Girls as young as 8, can gain symptoms of endo. Shouldn't schools, be taught what it is? How it can affect people socially, physically, mentally, just like anything could? And don't forget many women with it, don't just suffer from it alone, they have many other cases of illnesses along with it. Early Detection is the key.



March is the official Endometriosis Awareness Month, thus the reason for this post. So make people aware of it!


References:
http://www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx
http://www.cosmopolitan.com/sex-love/a4178/lizzie-oleary-endometriosis/


Want other opinions on Endo? Want help but dont know where to go? Advice from other sufferers? Or should I say survivors. Here are all the lovely groups on facebook.

Teenagers with Endometriosis:
https://www.facebook.com/groups/1433764010239350/?fref=ts
Endometriosis Support for Men and Women:
https://www.facebook.com/groups/404567832976869/?fref=ts
Endometriosis Crisis Center #1 :
https://www.facebook.com/groups/356313804579353/?fref=ts
Endometriosis Crisis Center #2:
https://www.facebook.com/groups/840363676078165/?fref=ts
Endo Girls UK:
https://www.facebook.com/groups/endosupportandchat/?fref=ts 
Endopost Snail Mail:
https://www.facebook.com/groups/ENDOvisibleyellowmail/?fref=ts
Endoblossoms:
https://www.facebook.com/ENDOblossomS-1485225381771501/

- Amy-lou