Endometriosis and its baggage!

The past four years for me have been consumed with that E word and the pain and unrelentless fatigue. I have now however come to a stage that I realise that pain isn’t just going to go away and that what matters is putting myself first and making choices that are both what I want and also realistic with how I am feeling physically.

That said, the past year has been the toughest mountain to climb in terms of mental willpower and emotional strength. I don’t want to waste time even describing what occurred but what I will say is that meeting a doctor who told me that I don’t have endometriosis and that I don’t belong in an endometriosis category is something that is difficult to get over. Just because my symptoms are not textbook classic and my pain has proved persistent does not mean that I do not have it. It has been seen and removed twice along with countless cysts.

What hurts me the most is when I try to forget about the bad memories but seem to be hindered when I dream of past operations. I know I can pick myself up and keep going but the smallest thing can remind me of a traumatic incident since I started feeling the pain and subsequently being diagnosed. Even a noise like a beeping sound can immediately bring me back into an operating theatre and the trauma and upset is relived. Most of my operations were never that straight forward with most doctors saying that there was nothing wrong with me.

So sorry for my rant as I am aware that what I am writing might be all over the place but every day I hope that the bad memories of specific incidents especially of terrifying doctors I have met on the way will go away!

All I want is to cope with the pain and not let the fatigue win. I suppose time will tell if those memories of the past can be forgotten.

xx

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  • hey there first of all id like to give you a massive hug! im so sorry your exsperiances are so hard for you and its still that traumatic! (sorry my spelling is rubbish) all I can say is stay strong every woman ive spoke to and including my self has had a bad exsperiance and its so devastating to be pulled left right and centre and told the things that they do my fav one was I got told use it or lose it or cut it out my doctors exact words!

    its hard to know who to trust but the best thing when you have the strength is to keep pushing them you know yourself better than anyone im not great at talking over computers as you might tell lol but stay strong and look after you I have good listning ears or if there is anything I could do to help.

    much love and light to you

    x

  • Thank you so much for your kind words. It means alot to realise I am not the only person xx

  • If you are having nightmares and flashbacks etc it may be worth trying to get some psychological support.

    I was dealing with what I believe was "betrayal trauma" which is quite similar to PTSD in symptoms as well as anxiety attacks and I found this book really, really useful

    amazon.co.uk/How-Master-Anx...

    Obviously we should all be careful not to over-diagnose ourselves with things but also, as we all know here, sometimes we do need to do what we can to help ourselves.

    The first step to that is understanding and this book really helped me to understand what I was going through.

    xx

    Good luck x

  • Dear Awnie,

    I am sorry to hear about your troubles. As a Consultant Gynaecologist with special interest in this field, this is a familiar scenario to me.

    Chronic pelvic pain is a complex problem and whilst being told you don't have Endometriosis should be good news, I understand how frustrating it is. Believe me when I say this is also frustrating for the doctors looking after you. It is much easier to be able to recognise the cause and treat it.

    As I am sure your gynaecologist has explained to you, Endometriosis is one of many causes of chronic pelvic pain. You may not have Endometriosis but your pain is real and needs treating. But it may be a complex and long journey and you and your doctors may not be able to put a name like endometriosis on your condition.

    My advice is to try not to focus too much on whether or not your doctors are right in saying you have Endo. Even if you do, there may be other factors involved.

    Medicine knows very little about this enigmatic disease. We know that it's severity does not match the pain, for example there are women with very severe endo but no pain and some with very little endo and a lot of pain. We dont' actually know how it works.

    this leaflet is a good one for you to read (from the Royal College of Obstetricians and Gynaecologists)

    rcog.org.uk/womens-health/c...

    I hope this is helpful,

    Best wishes,

    Shaheen Khazali

    Consultant Gynaecologist

  • hi everyone sorry i haven't been in touch but things where fine until i had my third and last injection, i had some bleeding also from my bowl and that was it the pain came back and has been with me since and now they say i need another injection which is this week thursday. it seems like i was before the treatment and i feel so tired and i want to just curl up and cry. my consultant has agreed to c me tomorrow instead of january so thats one good thing but i am lost as i read about ladies saying 3/4 endo etc i dont even know how far i am as i have not recently has a lap, my last lap was 8 years ago and she has started my treatment based on my symptom so i'm not sure what to ask her tomorrow,should i ask for a lap? please help and advice.

    thank u