I had a laparoscopy 6 weeks ago and they found I had endo and lasered away what they could.
Had my follow up on Monday and my doctor showed me pictures he had taken. He explained he could already see the beginning of endo developing on my uterus on the outside and showed me a pic... It was very red and he explained it as similar to conjunctivitis? I was a bit lost with everything he was saying to be honest and a little put off by the pictures! He kept saying I want you to understand I have not cured you etc. Which I totally understand now.
Does anyone have any advise for me as to what this means?
I am 24 and have not got any children yet and I am very concerned.
Would be very greatful for any comments, thanks!
Written by
Jo991
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Endo can come back anytime. Even when we have had operations. When it will be lasered it could be a possibility that the cells are not completely removed so it can return on the same spot and as well develop on other places.
It means that you still have endo, maybe you need another operation to remove more endo.
Did he talk to you about differnt stages of endo and how did they know you had it in the first place?
If you are with a general gynaecologist they may not be confident enough to remove all the endo correctly.. If this is the case then please have a look on the BSGE website and find a specialist near you then go back to GP and get a referral to them and the should be able to remove all endo with excision surgery which will greatly reduce the chance of it growing back.
Unfortunately with endo it's a chronic condition so you can never really 'cure' it. I had robotic surgery with an amazing surgeon 2 years ago and he showed me before and after photos (the after looked lovely and clear...) 2years on and im looking at another surgery. All the surgery does is to clear it out, help reduce the pain, potentially give you a good window to get pregnant, until it grows back again. Some people it will come back faster than others. It's always a balance especially with fertility - im having the second surgery to remove muliple large endometriomas and my remaining tube in preparation for ivf. Having said that not everyone with endo will struggle like i have with fertility but then there are women who have worse pain than me... It's the luck of the draw! Read lots (avoid dr google though!) ask as many questions as you can of the doctors and places like this forum can really help with support x
Hi, the things you need to note are what stage of Endo you have (1 - mild, 2-3 moderate, 4 - severe) some docs will use the descriptors, some the numbers. Also note where he said the Endo was located. If you need further info you can ask for a copy of the discharge letter sent to your gp. There may be unfamiliar doctor speak terms in this but just google anything you don't understand.
It does sound like you maybe need another surgery (excision is best) to remove the remaining Endo. Once you've been diagnosed you can be referred through for treatment at an Endo centre.
When you have Endo it is a long term progressive illness and, as another poster mentioned it is all about management - you may need a number of surgeries over the years, though some with mild disease only have 1-2 and it can stay quiet for up to 5 years in between. Using the pill or hormone injections after a surgery can extend your time between hospital visits and is important in conserving your fertility too preventing masses of disease growth if you aren't ready for a baby right now. This website was very useful to me, learnt a lot about Endo and medical/alternative treatments, have tried most. Everyone is different, it may take some time but you will find a combination of things that work for you.
Try not to worry about the fertility aspect too much. I was diagnosed at 25 with stage 4 and also concurrent adenomyosis by 27. Told to hurry up and conceive, Ivf by 27 etc etc. We weren't in a good position for having kids then, started ttc at 30, I had 2 v early miscarriages but am now 23 wks preg. We ttc for only a short period of time so clearly docs were all completely wrong. Many women with Endo are able to conceive no prob at all - particularly if there is no ovarian involvement - I had major issues with ligament, bowel and bladder Endo but it seemed for the most part to leave my ovaries alone.
I would bear in mind what you're feeling, where your Endo is/what stage and what your priorities are. I was told don't leave it beyond 30 which was pretty sensible really.
It definitely doesn't mean you have to jump into bed and get preg with a random guy tomorrow, but it probably means you have to think seriously about where you want to be in life in a few years and maybe prioritise finding mr right sooner (20s) rather than later (30s).
Hope that helps, don't feel under too much pressure from docs, it's your life and you need to do what's right for you xx
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