No support since op two years ago...is this normal?

Hiya.

After two years of worsening pain I was finally referred to a gynaecologist. The gynae diagnosed me in a matter of a second...I had an Iberian cyst (size of a tennis ball she said). I was sent for urgent surgery to remove the cyst. Following the op I was as advised by the surgeon, also the lady that diagnosed me, that I have endo.

That was two years ago, I have had one internal examination to see if a cyst had regrown, which I asked for as pain was bad again.

That's all, is this normal? As today I was speaking to a friend that has been given a 'stage' that she is at, and now I've come across this site, and I'm really confused.

I suffer really badly with mental health issues and fatigue and I dont really know what is what :///

8 Replies

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  • It may be best to arrange to go to see your GP as they will have the surgeon's letter which will set out what was done in theatre and what was found. Some surgeons send a copy to patients but not all. That should help you feel more informed xxx

  • Hi, thank you for your reply.

    I have the letter from the gyeno, it just says that an endemetriotic cyst was removed and that if I have any problems in the future then that department would be happy to help. That is all

  • That would suggest possibly that your endometriosis was confined to your ovary. Were you treated at a BSGE centre? X

  • Oh right, does that mean that it will only come back if a cyst does?

    What is BSGE centre? x

  • After my initial surgery for diagnosis and removal I didn't have any follow up (not even post surgery) apart from making an appointment with the nurse as my dissolvable stitches hadn't dissolved and were causing issues! Essential after the op the surgeon told me they had foud endo, removed it and if it came back or I had any issues to go see my GP.

    Unfortunately the aftercare and support etc is somewhat lacking when it comes to Endo and the NHS πŸ™„

  • Thank you. I wasn't sure if I was missing something that I should be or should of had.

    The thing is...I don't know how to identify if it has come back because a lot of the symptoms I suffer from could be due to other diagnosis I have (physical and mental), so I have no idea what is what :/

  • I would always say if you aren't sure make an appointment with your GP. Before you go write a list of the symptoms concerning you and if you can try to remember if you experienced these before you diagnosis. They should be able talk through them with you (may be worth asking for a double appointment if you don't want to feel rushed) and discuss the likelihood of the symptoms being related to endo or something else, and work our the next steps form there :) x

  • Also, what is this BSGE centre?

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