Newly diagnosed with endo

Hi everyone

I've just been diagnosed with endometriosis after having a laporoacopy last week. Had 3 years of constant right sided abdo pain which on the bad days ran down my leg and round my back. Eventually I was referred to the hospital who prescribed 6 months worth of zolidex injections which gave me horrendous night sweats and mood swings as this didn't help the offered me a laporoacopy. On the morning if the op the consultant was very rude and said she didn't expect to find anything and was only doing the op for my peace of mind. When I came round she told me they had found extensive endometriosis and burned/taken away what they could. I'm now waiting for an outpatient appointment to discuss the next steps - whatever they are...

I'm hoping that I will have some painfree days once I recover but am so worried that it's going to comeback - has anyone's pain returned after their lap and treatment?

9 Replies

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  • Hi - I havnt had my lap yet but totally feel for u with the pain. Heavily impacts ur life doesn't it. I've got all the same trouble. Back and forth from docs/ hospital for 2 .5 yrs so far. gets u down doesn't it. I kinda hope mine is endo tho now as I'm that worried and in pain. Did getting an answer to ur pain help you mentally?

  • Hi, I think it has helped - the consultant made me feel it was all in my head and I was making it up. I don't go back for a follow up appointment for another 3 weeks so I don't know the extent of the endo but it's helped reading about other peoples experiences on here.

  • I honestly thought I was reading my own story then...everything that you have written happened to me...even down to the rude doctor before the op...I too had extensive endo... I knew I wasn't going mad even though the doctors make you think you are..my lap was October 2011...I luckily got pregnant 2 weeks after my op so my endo kept at bay whilst pregnant, I had my beautiful boy August 2012 then I started my periods December 2012 so the docs recommended that I have a mirena coil fitted, I can't fault the coil apart from that I bled every month,not alot up until about 3 months ago... Unfortunately my symptoms are starting up again and my doc is referring me back to the hospital to investigate further...it's no way near as bad as what it was before but I know all the tell tell signs now...I was that bad before i would black out and was admitted to hospital...I don't want to get to that point again so that's why I have gone back at the first sign of pain... I do want another baby so I don't know what they will do for me but fingers crossed they can help....I hope they can help you further with treatment too and that it doesn't come back...it's such a horrible disease for us women...x

  • I hope so too x the dr mentioned mini pill or hormone treatments but I was still groggy from the anaesthetic and was too busy to come back and speak to me before I was discharged so I'm doing my own research now.

    I honestly thought I was going mad - nobody believed how much pain I was in - I even thought they were going to find a tumour or I was going to wake up and find out they'd done a hysterectomy - when no one listens to you your mind plays tricks on you and you think the worst!

    I hope you get a nice consultant this time who listens and understands x

  • Claire that's how I feel at the min- so worried there gonna end up saying it's something life threatening when they look as pain that bad!

    Do find reassurance reading others experiences.

    The not being believed is hard- think I've finally found a gynae who will be good- she was very nice at first consultation.

    I have a supportive network of family and friends but at times they don't understand. Can't be seen so don't understand. It's hard for them too but hard for us.

    I thought I was going insane to and being OTT but it can't be.

  • Hey, i had my lap over a year ago and about 3 months later my pain came back... there is a risk that it will come back after your lap! im on the pill trying to control it but i dont know if its helping, im currently waiting to go see my doctor again to see what my next step is. I hope you get better soon! xx

  • Thank you x I hope your doc can help x

  • I hate it when consultants are rude, as you wonder why they are in the job. They should never make a diagnosis until they have done their investigations. I had the same experience but with a registrar, and I complained about him and demanded a laparoscopy. The consultant was very nice to me and reschedule the appointment to when he could do it, and bobs you uncle I was diagnosed with endometriosis. It was so funny, as that registrar couldn't ever face me again, and his face if looks could kill.

  • She was a complete cow - didn't want to do the lap t was only because I said I would get a second opinion from one of her colleagues that she have in and said because of my size (I'm a size 20 so a bit overweight) I shouldn't be surprised to wake up with a bigger scar as a lap may not be possible because of my stomach! She should try and lose weight while being so tired and in constant pain - it's not easy!

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