Living with Endo

Hi everyone I wonder if anyone can help me?

June last year I started getting the most excruciating period pains I couldn't cope couldn't go to work felt weak and drained it wasn't until early this year I went to the doctors as I thought it may or just been body changing and my hormones turns out he said I have endometriosis (now this was without a laposcropy or any other official treatment to find out) they gave me birth control pills which I take for 3 months then have a break for a week then again so on and so on but I don't want to be doing this for the rest for my life and i want some answers or proper treatment I haven't taken pill for 2 months and periods are somewhat worse now still shaky weak get sweats diahhrea and severe pains. When am I in the position to request laposcropy to find out how much and how it's going to effect me!

An ongoing question on my mind is will I be able to. Have children and that's my biggest fear not being able to become a mum how long do you leave it trying before contacting doctor for help?

I'm in a bit of a muddle at the moment I don't know what's best to do and when and just need general advise and help! The birth control did get rid of the pain and made periods easier but didn't like the thought the endometriosis is still happening and working away but I just can't feel it! Me and my partner of 2 years are speaking kids now and i want to know where I stand in this instance!

Any help will be help I feel very lost right now!

2 Replies

  • You don't mention (as far as I can tell) your age; in any event, I would ask for the following:

    1) a transvaginal ulstrasound - these are pretty good at identifying cysts, etc. and sometimes can find endometriosis or similar;

    2) depending on the above, I would then seek a laparoscopy/hysteroscopy which is usually a day surgery where they put a camera into your uterus and see what, if anything is going on.

    Many of us are put on hormonal treatments, including the pill, even without a formal diagnosis - I do think now some doctors just assume it's endo even if they are not sure. Once formal diagnosis is made (because it may not be endo), then you can review your situation and what is best for you. Some people are able to have children and some are not - it varies. In my case, I could get pregnant but could never manage to carry to term.

    Whilst the pill (and other drugs to stop periods) do alleviate symptoms this is only because they stop the endometrium growing sufficiently to shed and hence create cysts and scarring, etc.

    There is no 'right' time to ask for treatment/investigations as it depends on your own circumstances but if you're in that much pain I would demand (nicely!) a referral to the gynaecologist for further investigation. It could be endo, but it could also be other issues too.

    If your GP refuses (some do) then insist as they are legally required to provide such and if he continues to refuse then speak to your local hospital as sometimes they will take you without a referral.

    Good luck and keep us posted..


  • Hi - there is a protocol to be followed that is laid down by guidelines and the time to be given an option of a lap is the moment you are diagnosed with suspected endo. This is for you to choose, especially if you are wanting to conceive. An ultrasound scan is not a means of diagnosing endo. It can confirm some types but it cannot rule it out so is not appropriate for an initial diagnosis. You run the risk of being told you don't have it. Please have a look at the following link that confirms what your GP should be following:

    If you are in England you can also choose who you want to see, and I would strongly recommend that you ask for referral to a specialist endo centre from the start as so many women have endo missed in general gynaecology. They will do any additional tests/scans that are appropriate. Click on my name and have a look at my post on how to find a specialist centre. x

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