New and confused

Hey guys, I'm totally new to this, but glad I've joined so I can read some of your stories. My periods started heavy at the age of 14, and doctors tried me on a lot of different pills to help control but nothing was helping. The pain then began and i was doubling over in pain and I remember several times fainting at school and home from the pain and heaviness of the bleeding. The pain also makes me sick and very lethargic. Again I kept going back and forth from the doctors for help and they kept putting me on pills and then the depo injection. My weight was up and down with all the tablets. I was given mefanamic acid to help the pain. I'm now 20 and still in the same boat. My periods vary from having a huge one to having nothing for months. Around a year ago my tummy started bloating, and makes me looks like I am pregnant. My tummy bloats all day every day and it's so uncomfortable. I was rushed into hospital with the pain and bloating and was brushed off because my bloods came back fine. They put it down to something I ate! Again back and forth from the doctors and finally something is being done. I refused anymore pills because nothing was helping and I was fed up of being messed around. I'm now awaiting my letter for the gynaecologist. The GP has spoken to me that the issue may be endo. So until then it's all a waiting game...

Ellis x

7 Replies

  • Hi Ellis - you are actually at a critical point in what may become your 'endo journey'. Your history so far is typical of being pushed from pillar to post in a unjointed way that has got you nowhere. But you now have a diagnosis of 'suspected endometriosis' and there is protocol to be followed by your GP. Where in the UK are you as this will affect the choices open to you?

  • Hi Linda, I am located in Hereford. I'm just glad finally I'm getting somewhere, but very slowly x

  • Hi Ellis - that is good as you can choose to see any specialist you want under NHS Choices so should insist that it is a specialist in endo. This is the protocol for suspected endo:

    Be aware that most GPs (and some gynaecologists) will usually want to put you on hormone meds before considering a lap but you have already had lots of these, so that stage should be bi-passed, but in any case it is your choice if you want to have a lap next, which I would advise. Click on my name on how to get a referral to an endo specialist.

    I would strongly advise that you tell your GP that you won't see a general gynae (which is probably where he/she is proposing to send you) and that you wish to exercise your rights under NHS Choices to see a specialist of your choice who specialises in endo. This really is critical because general gyneas are usually just not experienced enough to recognise endo in all its forms and so many women come away told that they don't have endo when they do - it is hidden from view. They can then go years being told they have all manner of other things or they are imagining their symptoms only to end up with very severe endo that is hard to treat. Pm me if you have any problems getting to a specialist centre. x

  • Thank you so much for the advice. I've been on so many different pills and they never help, so I was annoyed when they said about trying another hormone pill out. That's when I refused and said that I've had enough of being messed around. One GP said that because my ultrasound scan came back fine that there is nothing wrong with me. Then another GP was helpful and finally shone some light into what may be wrong. I will definitely look into seeing a endo specialist rather than gynea. I agree that I'm ready for a lap now to see what's going on. Thank you x

  • Please be aware that an ultrasound will only show certain presentations of endo such as ovarian cyats caused by it (endometriomas) and perhaps scar tissue that might be pulling structures out of a normal position but they are generally considered not in any way diagnostic for endo. The can sometimes confirm it but can never rule it out. Your GP should really be aware of this. Stick to you guns and take control now. x

  • Hi Ellis,

    I also had bloated to the point of looking like I was pregnant. I've never fainted from the pain, but it was interfering with my work. I just finished my third week on "endovan" and my bloating has gone down SIGNIFICANTLY (like 10% circumference reduction). I'm keeping a journal of my symptoms (before and after) and my first period while taking endovan was soooooo much more bearable than before - even though I'd only been on it for a little over a week at that point! I'm still a little lethargic, but I don't feel as drained as before. I have a post on this (I don't know how to share links on here... search "review of endovan" or just "endovan" will probably bring it up) and I'm going to update it again next week since that will be the 1 month mark.

    Everyone is different, and my experience may be a fluke, but I definitely think it's worth it to try if you've tried everything with the doctors (or even if you haven't!). It doesn't require a prescription because it's all-natural, so doctor's won't suggest it (at least not here in the US).

    I really hope you are able to find something that helps you! You are not alone!!!

    - Ashley

  • Hi Ashley, oh brill thank you! I'm UK based but I shall definitely look into trying that. The bloating is ridiculous and sooo uncomfortable!

    Thank you for the advice

    Ellis x

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