Symptoms ???:

Hi all,

I just wanted to get some feedback!

I was told over a week ago that I'd most likely got Endo - after years of knowing something wrong was wrong. I have pains around my left pelvic area, often bad pains in general stomach area, pain during intercourse and spotting too!

Im currently going through lots of tests to try and find the issue.

In the meantime I wanted to see if people get pain badly and then some days its barely there at all? Its more regular than just being a monthly thing around my periods but last week for example I was in agony, the last 3 days I've been okay?

Thanks

Becky

6 Replies

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  • Hi Becky my pain can be really random, some days horrid and some I feel nothing at all (for weeks even) Endo is definitely not just period pain, I wish there wasn't that misconception!

    From your symptoms it sounds like you have endo, mine are the same plus others. I also knew for a long time something was wrong but was fobbed off for years.

    I hope you get answers and any treatment you need, I'd advise you to make a list of your symptoms for when you go, it can sometimes be hard to remember everything during the appointments. Wishing you lots of luck xx

  • Hey Georgina,

    Thanks for your reply.

    I have started making notes but I think I need to be a bit more detailed, like you suggested! X

  • Hi, endo can cause pain every day of the month in some cases. Most people will find it most severe during their period. Some will find it worst in the run up to their period.

    What I would suggest you do is start a symptoms diary, which will help both you and any doctor trying to diagnose you.

    Either use a regular diary and jot down daily notes. Or create a table - date in vertical margin, symptoms listed along the top ie. Pain level (write number), then tick whether the rest occur such as nausea, back pain, pelvic pain, fatigue etc etc, leave a box at the end to write any other notes you need.

    endo-resolved.com/symptoms....

    You could do one A4 page per cycle and then compare month to month to see if there is a pattern. It can make endo easier to manage as well as helping diagnosis. X

  • Hey! Thanks for your reply. This link is so helpful, I managed to have a look today and there was lots on it. I am going to start keeping more of a detailed record of what's going on because when you go for check ups etc, they often ask and it is also difficult to remember what has been going on!

    X

  • Are you in the UK? If so talk to the 'Endo UK' people, - link at top of page'. It may be that you should be seen by a 'BSGE' specialist Endo Centre, but first you will need a diagnostic laparoscopy. Read all the info on Endo on the 'Endo UK site, as that will help you to understand your current tests and results, and to determine if the treatment being suggested is appropriate. In the UK, too many women are sent to general gynaecologists, when they should be seen at the specialist BSGE clinics. And one of the worst things for Endo sufferers, is when endo tissue is missed, or wrongly/badly removed by non-Endo specialists. The there and 'not there' of pain is failyr typical - it was my experience - but Endo sufferers do vary hugely.

    The one thing I would say, is that it generally gets worse with age and time, and particularly if it is only partially, or badly treated.

  • Hey,

    Thanks for this, you've encourage me to research more before just going along with what you are told - which is easy to do!

    x

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