After a Lap a few days ago i have been diagnosed with Endo but they gave me no information....? Confused!

Hi, I was sent for a Lap last week because I have been have sever pains during intercourse over the past few years and wanted to get it looked into. It has taken may GPs to take me seriously as nothing showed on smears or examinations. After being referred to the Gynecologist at the hospital he listened and sent me for a Lap.

I had my Lap a few days ago and the surgeon found Endometriosis and removed a few areas of tissue however couldn't remove on spot because of the dangerous location it was (he never said the location). I fell really confused because before the surgery I had not heard of Endo and the Surgeon explained what happened after I woke for the surgery and I do not remember what he said (He even said I wont remember because of the General!). He recommended I take my pill for 6 months without a break as this would remove the remaining Endo and to return to the hospital in 6 months to discuss this further.

I have done my on research since he surgery I other than getting extremely bloated I do not have any other symptoms. Do you guys have any information such as will this come back after they have removed? Why didn't they tell me what stage I have? Will this make is difficult to have children. Just seem really confused why they sent me away with no information and have to wait 6 months!

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  • Sorry to hear that they haven't given you any information. I too had a lap this week and was diagnosed with endo.

    Unfortunately, it's one of those conditions where everyone is different. The endometrial tissue uses oestrogen to grow and she'd just like a normal period , only it's trapped within the abdominal cavity and so cannot leave the body. It then grows and sheds each month and can cause scar tissue, adhesions and inflammation.

    If you are unsure of what the consultant has said, could you possibly ring the secretary and see if they can help? Maybe ask to come in and see the consultant to discuss further? Hopefully they should be able to sort something for you to clarify what they have found?

    It can be difficult to know whether it will return but by taking your pill back to back it should eliminate the shedding of any endometrial tissue which should help to improve your symptoms and hopefully help the tissue to shrink.

    Hope this helps, all the best xx

  • Same here! Royal Free, North London. Sent home without speaking to anyone. 2 months on and over 20 phone calls later and no one wants to explain to me what's going on. I understand your frustration. Don't give up with the answers as ask for 2nd opinions on treatment if you're unsure

  • Hi, it is horrible that you have not been given detailed information on endo. your surgeon should have given you all the details plus support group numbers...

    I have severe endo and have had one keyhole and am scheduled for the second one after 6 month meds. given that the medical world still does not know why women get endo it is very difficult to say weather it comes back after removal or not... it is really depends on the individual.. i know this does not really give u much :( but i have done so much research on this and all comes down to how each individual reacts to the operation and meds...

    If i were u I would find a surgeon who is has much better communication skills then your current one! my doc has even given me her mobile number to call her 24/7 should I need to speak with her, that alone give me a so much comfort level and the fact that I know she is within reach anytime i need is a good feeling... also when I was diagnosed with endo she spent over an hour with me taking me through all options and helped me decide what i was most comfortable with and she took pictures (on my request) of my keyhole and explained every thing step by step... so that all gave me a much better understanding of what is going on in my body and how I can deal with it...

    regarding your bloating, unfortunately that is one of the side effects and I too have it... try helping your body with things like ginger and fennel tea, and try not to consume foods that encourage bloating...

    and as for fertility, again it is very individual driven and your surgeon will be the best person to tell you if you will have difficulty...again, I know it will be hard for me to conceive "normally" i will need help... so have a chat (if you get a hold of him/her) with your surgeon and find out what your options are...

    the most important thing is to stay on top of it and helping your body daily by staying healthy and feeding your body with good nutrition and staying away from stress as much as you can (if that is possible!)

    good luck :)

  • Hi,

    Endo can be a very big challenge but it depends on the individual.I was relieved when the doctor finally gave me a diagnosis because at least i know what i am dealing with. My doctor prescribed visanne for me which is very good and I am pain free. Try not to worry too much and find a doctor who you can communicate with

  • I had a laparoscopy and was diagnosed in 2008, the surgeon swnt his secretary to see me afterwards, who said I had endometriosis and had 3 patches removed, but 5 more were in the early stages of development but they had been left. No further information at all!

    I found out more from the endometriosis uk website than any doctor, before or since!

    In my case, I was very relieved to finally have an answer as to what was wrong, but as time goes on, more information would be very welcome!

  • I'm in the same boat as you...I had mine last Monday but don't remember much of what I was told as I was still coming round. I feel lost and wish I knew what the situation is and what is going to happen next....

    Good luck with finding out!!

  • Thanks for all the responses everyone! It's has been great finding this forum and website much more helpful than my surgeon that's for sure.

    I contacted my gp this afternoon who will arrange an appointment once they receive the notes from the hospital.

    Good luck with those in the same situation as me and thanks for all the advice!

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