Endometriosis Awareness


Did you know that :

Firstly – Endometriosis is only possible to diagnose through surgery , some consultants are now using MRI scans but they are not as affective – even following surgery only 1 in 3 women will be diagnosed.  This doesn’t mean the other 2 don’t have endometriosis it just hides in obscure places it is the hardest disease to locate. In many ways I was one of the lucky ones – they found the main endo site in me.

Secondly – With each surgery (I have had 3) lesions are caused – the endometriosis attaches itself to these sites and causes even more discomfort for the sufferer.  Surgery is not always the best option,  there are many hormone treatments that are used.  Most of which I have tried over the past decade or so, the side affects are hideous and long term affects on the body are not completely understood.

Thirdly – the average wait for a woman to get diagnosis is 10 years,  for me it was 21.  Maybe if they had caught it early my outcome would have been different,  I don’t live in the past, and am starting to embrace my future,  but it would be a travesty if this diagnosis rate doesn’t change over the next decade. Endometriosis has stolen so much from our life.

Fourth – having your ovaries, and womb removed DOES NOT cure you of this disease,  for many ladies it does.  Yet for some Endometriosis continues to interfere with their lives , health professionals do not understand why.  It is highly likely that my endometriosis is re growing on my bowel,  my endo likes me too much to leave me alone.

Fifth – at least 1 in 10 women have Endometriosis,  its more common than breast cancer but its known as the silent disease.  Every woman I have spoken to has been told at some point by a Dr when discussing their problems with their body ‘you are a woman, you have to get on with it’

It is for these reasons that I have chosen to continue to raise awareness of this disease.

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  1. Oh my so glad to find this site. I always thought Endometriosis was only something that was diagnosed as a young girl, and so I was shocked to discover that after having 3 children and being 30 that I was suffering from an advanced case of Endometriosis inside my uterus called Adnemyosis ( sp), and so after so much misdiagnosis and pointless laparoscopy procedures, I had a partial hysterectomy. I guess that bought me a few years, but then I started having horrible pain in my lower right side so much I had to put my hand there. The pain was cyclic though, and I could not stand it anymore. It had been diagnosed as a hernia, so I thought I would go in and get a hernia repair. and then I was told it was a lump not a hernia! A lump? So I went through a very whirlwind and painful process including a biopsy I will never forget( and was awake for), and the pathologist determined I had a desmoid tumor, a rare abdominal sarcoma that does not spread but is cancer. So obviously I wanted it out of my body right away. Due to various circumstances, I got to a super specialist and had a very extensive surgery ( due to wide margins) including a reconstructive plastic surgery soon after diagnosis. I had 5 jackson pratt drains for over 5 weeks and have a fake abdominal wall now and a huge huge recovery ( sometimes I wonder if I ever will recover fully)! And then weeks later, the pathology results come back on the specimen from the surgery, and it is an endometrioma/endometriosis! Such misdiagnosis has def caused me to lose faith in the medical profession on this disease. Now in a diff city and state and experiencing a whole new set of lovely symptoms a year later, I have sought out two opinions. Both doctors believe I need to have my ovaries( and possibly cervix) removed due to the stage 4 Endo that is now attached and fused my private parts 🙁 causing very unpleasant symptoms. and pain. I just feel that it is everywhere now. I am so tired and feel so old :(– I have had 7 surgeries in 8 years, and I do not see an end in sight. I am so afraid to get a complete hysterectomy due to hormones and yet another huge recovery. I refuse to do the injections though due to side effects, and I do not need to preserve any fertility. My heart truly goes out to those of you suffering from this disease before you are able to conceive children :(. That is my one saving grace that I was able to have children and easily. Would you live with this or have the surgery? I just wonder if the surgery will create more problems with scar tissue or if it will cause new problems due to instant menopause! The doctors say there is a possibility of scar tissue becoming a bowel obstruction or other. But it does not sound like they can really address those issues anyway, so I do not know if the surgery will help? Will it? I wish they knew more about this disease, because I feel it has stolen my 30’s :(. Thank you for listening.

  2. I’m 42 – I had and possibly still have endometriosis. It can be treated and come back.

    In my mid twenties I was having terrible stabbing pain on my right side, luckily I had just registered with a Doctor who really listened to me. He sent me in to hospital to get checked out by a specialist. He was also aware of the silent issues of this an ovarian cancer.

    They found that I endometriosis on my ovaries, this meant I could not have surgery. I had had one child but wanted more.

    I was treated with injections of Prostap – a treatment for prostate cancer but known to shrink endometriosis in hard to treat areas.

    Afterwards I was told I would need to be on the pill. Either combined or mini. I tried for another baby and succeeded but was told to go on the pill asap.

    I can’t tolerate many pills but am now on a more expensive pill Yasmin.

    If you are not lucky to have the right doctor, insist on being sent to a specialist. You know your own body better than anyone. No-one should suffer in pain.

  3. Only if you don’t moderate the amount you eat in line with the restricted exercise you will not be doing. 🙂

  4. I was wondering from any one that has had a hysterectomy..Do you gain alot of weight afterwards?

  5. It is shocking how many women have similar stories – it took me 20 years to reach a diagnosis after being dismissed time and time again by members of the medical profession. Even after diagnosis my consultant didn’t give me the full story which impacted on my choice of treatment. I have signed the petition and applaud everyone who is working hard to raise awareness of this horrid condition.

  6. i have been back to my doctors to still b told the hospital has stil got send the letter to doctors to let them no to let me no what stage my endo is at. i will b going onto the pop pill on my next period- been given 3months worth for now. but its not the point its been 2weeks since my op and hospital have still not informed my doctor. so hopefully i can get through to the hospital tomorrow at some point and ask why its takin so long for them to send it out. because its really worrying me now

  7. Nikki, it’s normal to feel the way you do when you are given news you find shocking. They are proposing the right sort of treatment though and the important thing is that it can work wonderfully well – but you won’t know unless you try it.

  8. I’m always amazed by the stories of endo – the amount you have doesn’t have to be related to the intensity of the symptoms you get and it can be so frustrating. I met a woman on Saturday who had no symptoms at all and didn’t know she had it until she had surgery for something else entirely.

  9. i have been back to my doctors and they have to wait for the letter from hospital before they no what stage it is. but all i have been told is coil is best… or the mini pill which is the one that dont have estrogen in it as it disagrees with me. or having the coil thing in my arm. i have read that with or without treatment it can either get better or can get worse. so realisicly nothing works if u look at it that way. except gettin pregnant . but even tho i would like to try for more kids my partner doesnt want ne more wel not at this moment in time neway. just i dont no what to do and at hospital after my op i was told that the endometriosis spots were on the out side of my womb. but my partner had to say it again to me cause once they told me they had found something and said endometriosis it felt like my brain stoped working n i couldnt breathe. i remember feeling sick, – and all i remember after that was i wish i never had the operation now and i would b worrying about it.

  10. Hi, I was diagnosed about 4 yrs ago with Endo following a laparoscopy investingating period pain, they found a dermoid cyst along with extensive enometriosis which had been causing all the pain for years,to extent of days each month in agony, bladder issues and period pain to passing out stages. Had a second op to remove the cyst/overy/fallopian tube and whilst in they lasered a lot of the endo. Boy what a difference since then totally different each month, but was told it would give me a good 4 yrs before had probs again. Now have a massive fibroid creating the trouble and looking like a hysterectomy on the cards, due to the endo they are not willing to do by laparoscopy.

    My sister also has endometriosis but it took years for them to diagnose her, following problems conceiving and period problems for years, eventually discovered a build up of the endo between bowel and womb which stopped her giving birth naturally. I understand it is very difficult to diagnose so I feel extremely lucky in one way that they found mine and dealt with it quickly, although on the other hand it is a daunting prospect to think you are living with something that could create major problems inside and you cannot see it happening.

  11. Hi Nikki. The diagnosis means that endometriosis was found on the ligaments that connect the womb to the abdomen and it was burnt off. They are probably recommending that you try hormones which will induce a temporary menopause to allow the endometriosis to die back.

  12. hi im new to this all endometriosis, i was diagnosed with it yesterday wenesday 7th sept 2011. on my letter from hospital it states- satisfactory – endometriotic lesions found on ultero-sacral ligaments- diathermised.- which does not make ne sense to me at all- so if ur able to explain that to me- would b a very big help and other part of letter states advice,recommendations for GP= long term hormones advised for endometriosis pain. infection risks-= minimal none of this makes ne sense to me. im at doctors later this afternoon so hopefully find out more. but will c. just i have read if u dont have ne treatment u have more chance of delevolpin ovarian cancer- but treatment doesnt always work.