Hiya ladies is there anyone who's got endometriosis who can give me some info on it? My doctor thinks I've got it I'm also tired constantly bleed after sex and have pains etc. I've been referred to a gynaecologist who deals with endometriosis just waiting on the appointment. If any of you ladies have it please share your symptoms etc and what treatment did you have? If you have treatment does it work or can it come back or is it one of them things you always have? Thankyou xx

6 Replies

  • I think your best bet is to have a look on the endometriosis.uk website there is so much information on there that's where I headed when first diagnosed .The information is to the point and concise information on different treatments etc

    best of luck

  • Hi

    When you say that you have been referred to someone who deals with endometriosis, can I just check that you really have.

    The list of accredited surgeons is on the website of the British Society of Gynaecological Endoscopy (BSGE) at the Royal College. You must not have surgery done by a general gynaecologist who just says he or she 'deals' with it, but only in a Centre of Excellence by a surgeon who is carrying out excision all and every day. Unfortunately most GPs and general gynaecologists know nothing about it. If yours is in one of these centres then you will be in good hands.

    You can see any specialist anywhere in the county under NHS Choices and it is worth travelling to the best. The will all be experts but the UK's best is generally regarded as Mr Ashwini Trehan in Yorkshire, even by other specialists, and women come from all over the world to see him. He is my specialist but thankfully I haven't had to see him in the 6 years since his surgery. Once you finally get seen by a proper team in a proper unit you won't ever look back.


    Read all about endo and how it should be dealt with on Mr Trehan's website:



  • Hi Tasha,

    Your symptoms can be confirmed by me. That is how I started and took over a year to get diagnose, I had also hormonal problems and I had several treatments with no effect.

    Soon after the treatments my periods were about 14 days... And yes I bleed each time after sex as well.

    When I first so by the specialist said the scan I've done shows one but it is not operable yet and I choose to wait, had my zoladex injections and was normal for about 15 months. As soon as the period when funny, and funny I mean by not stopping I had more request for scans. With my GP everything took weeks and months of waiting, my new symptom appeared over night, pain on my back, left hand side and with time going down my legs.

    By the time I went to the specialist I already find it difficult to walk in some days... This was in may... I had surgery last week of October, that is how long I had to wait... Not had much luck with my details lost and weekly calls.

    Please note that I did not take any pills for pain and I worked with it everyday, I suffer for constipation and don't respond much to laxatives so I kind of took with the painful way. Not sure about you but may need to be careful with the pain management because I for example got sickness and could not eat, I went to ER and they gave codeine, I told I am on the waiting list for surgery and I just need something to ease the pain or the sickens because I could not touch any food. I am also lacto-intolerable, not diagnosed by GP but decision took by me when I had cramps when I had milk so I stay away from cheese as well.

    Please feel free to message me if you like to talk more about this I am here any time.

    Good luck and have patience , you will need it :)


  • Tasha,

    To add to this I had painfully bladder as well as bowel movements, sometimes bleeding.

  • there is lots of information on the endometrosis uk website, you will find that everyones symptoms can differ and that different treatment works differently for each person it really can be trial and error. The best for me was the decaptyl injections they really helped my pain, side effects are not the best but was worth it as was almost pain free. They can perform a lap if you have it to remove it and help your pain but it can come back as far as i am aware. They just put you on birth control after your op to keep it at bay. Try not to worry you do learn to cope with it and everyone has different out comes I had a friend who had an op then it never bothered her. It just depends what stage your endo is at. The important thing is don't let it rule you and keep on at the consultants until they find the right treatment for you :-) good luck with everything xx

  • Hi Tasha, My video on youtube goes through a few different 'medical definitions' of what Endo is, and the affects that it can have, please have a watch as it may help a little. When have you got your appointments?

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