Friday, March 9, 2012

The Hidden Horror - Endometriosis

This particular blog post of mine is minimally related to fashion, however my endometriosis can and does affect my clothes choices and this is why I am sharing in this public place. I can live with the embaressment if I help one other woman get diagnosed. March is endometriosis awareness month. This invisable illness inflicts horrendous damage. It is a lead cause of female infertility and has many more crippling effects. Unfortunatly public knowledge of the disease is low. The average time for diagnosis is 7 YEARS! Many women are misdiagnosed and receive the wrong treatments as happened with me. Early diagnosis is terribly important. I'll start with explaining the sciencey bit.

Endometriosis (pronounced end - oh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Every month the body goes through hormonal changes. You naturally release hormones which cause the lining of the womb to increase in preparation for a fertilised egg. If pregnancy does not occur, this lining will break down and bleed. The blood is then released from your body as a period. Endometriosis cells react in the same way – except that they are located outside your womb. During your monthly cycle your hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body. This leads to inflammation, pain, and the formation of scar tissue (adhesions). Endometrial tissue can also be found in the ovary, where it can form cysts, called ‘chocolate cysts’ because of their appearence

Endometriosis is not an infection!

Endometriosis is not contagious!

Endometriosis is not cancer!

Endometriosis is most commonly found inside the pelvis, around the ovaries, the fallopian tubes, on the outside of the womb or the ligaments (which hold the womb in place),or the area between your rectum and your womb, called the Pouch of Douglas. It is also found on the bowel, the bladder, the intestines, the vagina and the rectum. You can also have endometrial tissue that grows in the muscle layer of the wall of the womb (adenomyosis). It can grow in existing scars from previous operations. In rare cases it has been found in other parts of the body such as the skin, the eyes, the spine, the lungs and the brain. Endometriosis affects approximately 2 million women in the UK. It can be a chronic and debilitating condition. Endometriosis can impact on a woman’s life in a number of ways which include:Chronic pain, Fatigue/lack of energy, depression, isolation, problems with a couples sexlife/relationships, fertility problems. Endometriosis is generally rated on a scale of 1 - 4 with 4 being the most severe.

My endometriosis story started when my periods arrived at 14. From the word go they were difficult. I would have chronic constipation along with severe PMT the week before, then when my period started I'd have dreadful diarrhoea. My stomach would balloon out so I had to wear elasticated waist clothing. I still have to do this now but I now know how to disguise it but I didn't at a younger age I also had to keep to school uniform. This was so hard to cope with back then. The actual period symptoms of excruciating cramps that would go up my back and down my legs and bleeding so much I thought I would die turned me into a wreck. My Mum was very supportive and took me up the Dr's where I was fobbed off with an anti inflamatory drug. It thenquickly came to the point where I was missing school as they were so bad, when I could go in on my period I could not do PE. My school started getting difficult. I went back to the Dr's and got referred to my first gynecologist I was just 15. He was old enough to be my Dad and I was in tears squeezing my mums hand as he did an internal examination. He told me that young girls often have painful periods and it would get better when I had kids but he reccomended I went on the combined pill. Well that was the start of over a decade on various combined pills none of them worked for longer than 6 months (I'd always continue to bleed through them) I had two relationships fail because the pain makes me want to be at home, also physical intimacy(sex) HURTS. I had 4 stays in hospital over this decade with accute abdominal pain I got told I had IBS, constipation, PID you name it when they said PID I was so humiliated they were inferring in front of my mum I slept around. I kept myself together by taking obscene amounts of OTC painkillers and sleeping as much as I could I wasn't aware that at the time I was clincally depressed because of the pain. I kept going to and from the dr's and it was when I had a smear that left me in agony for hours she re-referred me to the hospital that was in december 2007. It was then I heard the word endometriosis for the first time. The consultant said they would treat it as suspected endo I got given naproxen and norethisterone but that still wasn't helping. I then had a d+c with a mirena coil. It caused so much pain I had it removed after 12 weeks. Then in August 2008 I collapsed at work with right side abdominal pain. I explained to the paramedics what I was being treated for but I got rushed in regardless. The pain was so excruciating it took the ambulance crew 30 minutes to get me comfortable enough to travel. I got taken to the majors section of a+e and they said they would treat as suspected appendicitus. I went down to theatre. I came to and the surgeon spoke to me and my mum. He told me that I did have endometriosis and it looked like I had a cyst burst which had caused the pain. Then came the joke part my gynecologist would not accept the word of the surgeon who had operated as he was a general surgeon. At that point I found out my hospital does have an endo specialist so I asked to be transferred to his list. I saw him in December 2008 and had my laparoscopy and diathermy on March 2009. I had my diagnosis grade 3 endometriosis with adhesions on my bladder and bowel. I was 30 I waited 16 years for my answers. I went for a follow up appointment and was told that because of the damage the disease has caused the odds of me being able to have children are very very low. That crucified me and even sitting here typing it I have tears streaming down my face. I am now looking at the possibility of a hysterectomy at the age of 33 After my diagnosis I found amazing support at the charity Endometriosis UK They have local area support groups, a freephone helpline and will send information leaflets and a whole host of other helpful stuff. They have saved my sanity. Sharing what I have been through is very emotional. I just really want to get the message about this evil disease out there, it attacks your femininity so if you have any of the symptoms shown below on the picture PLEASE ask your doctor about it.

Ladies lets raise awareness NOW.


  1. Thank you for posting. I was diagnosed last year after surgery for cysts on my right ovary. This post will help me further explain the disease to my husband and family who sometimes have trouble understanding what's going on.

    1. I am so pleased this helped you Laura. I will be doing a follow up piece on this xx

  2. Thank you for this personal, moving post. My mom has endometriosis and was misdiagnosed for year, being wrongly treated for syphilis and ulcers to name a few. I exhibit a lot of endo symptoms and worry I might have it, but my doctor could care less.

    In her early thirties, my mom was told she wouldn't be able to have kids, but she was able to have my sister and I.

    1. Thank you for reading Sonia. The medical profession in general have no real understanding of what this disease does. Misdiagnosis seems a common story from my own experiences and other women I have talked too. We really need to put a spotlight on this but it's so deeply personal a lot of women get embaressed talking about their lady bits. I spent years feeling humiliated by doctors. I now refuse to let myself be bullied by them

  3. Thank you for telling your story. I was also misdiagnosed, with several doctors claiming that I was actually experiencing pain because of my fat. The whole story is here:

    On the one hand, I can see that endometriosis would be tricky for the best of doctors to diagnose. But on the other hand, that vagueness seems like an excuse for the worst of them to read every prejudice they have onto our bodies.

  4. that is so fantastic blog sweetie xx