Hi there,
I’ve been recently “diagnosed” with endo but the doctors won’t do a laparoscopy (probably due to costs etc). There is a family history of endo and my symptoms are quite severe so they think based on this that I have it. However I have read from so many places that a lap is the only way to truly know and id like to know exactly how far spread it is before I decide on treatments. How did you go about getting one?
Any advice welcomed!
Thank you so much 
It's about risk, not cost. An op comes with risks too. Are your symptoms severe enough that you are willing to take the risk of having an op to remove what could / could not potentially be there. Risks of removing endo which can damage the organ it is being removed from, mine was bowel and bladder, no risk to my uterus. How old are you, do you have kids yet?
Thanks for your reply. I have just turned 26, no kids. I suffer with painful bowel movements, severe bloating, inability to control my bladder, back and pelvic pain and bed bound during the first 2 days menstruation. They've put me on medication for the first 3 days of my menses which has helped with blood flow but the other symptoms are still there.
I need to look into the risks of the op more it seems, so your reply is really helpful.
Its incredibly common not to want to surgically confirm due to the risks associated with the surgery (Perforation, bleeding, adhesions, low-resolution of pain to name a few).
The non-surgical treatments of endo are all very similar, mainly being hormone therapy and a laparoscopy isn't likely to change this as they will remove what they find and then keep you on the hormones.
Also sadly, knowing how far it had spread today will not help you for the future. I was medically diagnosed like you, waited 5 years for surgery and at this point the endo was minimal, stage 1. I had surgical removal, hormone therapy and 2 years later (last week) required further surgery, to find it had spread "like wildfire" and was in my bowel among other places and now stage 3.
Endo is a massive pain in the arse and severity of the endo doesn't always correlate with the severity of the symptoms. I had more pain with 2 tiny lesions than I did when I was "covered" and this seems to be a commonly acknowledged issue.
Assuming you are not currently experiencing life-changing symptoms or having difficulty while trying to conceive for over a year, I would trust your consultant.
There is no harm in calling them/their secretary and asking for the opportunity to discuss these concerns with them?
Thanks for taking the time to reply! This is really helpful. I just felt confused after seeing the consultant and then hearing I had been discharged without any follow-up. I guess like you say I have to trust the process.
No problem at all. You're doing the right thing to reach out to this community for answers, I remember how isolating it was when I was at your stage. Please keep reaching out with all the hurdles!!
It's all extremely confusing and especially frustrating when people tell you that you don't have endo if you havent had surgery! But there are such big risks with the surgery.
Have you been started on any hormones? Or the mirena coil?
The other suggestion I have for you is to keep a daily symptom diary. From this you will be able to identify trends, things that make the symptoms worse...etc but will also have a log that you can present to your doctor if your symptoms worsen which may help them decide which route is best for you!
Good luck with your journey!
I have been prescribed Mefenamic acid and tranexamic acid, the same tablets i was prescribed at 14 years old but suffered severe side effects.
They did offer hormonal treatment and the coil, however I had a really bad experience with the pill previously so wish to try the non-hormonal methods first. They helped with blood flow during my first period since diagnosis but the other symptoms did not ease.
I am going to start the symptom diary today, that's a great idea!
Thank you again
I went to my gp as I was getting a lot of pain in my back and around my ovary. All he did was put me on the depo inj which didn't do much. So I then went to my (private) gynae who is very good. He did a scan there and then and saw that my left ovary had stuck itself to my womb. He believes that due to my symptoms, it is endometriosis. (there is a family history with me too).
I ended up hospitalised with the pain a few weeks later and went back to my gp. I had to beg for a laparoscopy and he (reluctantly) reffered me to gynae. I think he was more annoyed that he'd missed something so vital and it had been picked up by someone else.
I think had it not been for my gynaecologist they would not have reffered me. However, sometines they need the extra pushing.
Thanks for the reply! Do you mind me asking which scan you did to see that the left ovary had stuck itself to your womb?
It was an ultrasound (like what you have for a pregnancy).
I went to the doctors with severe pain and bloating in which they did blood tests and found raised CA125 cancer tumour markers. Because of this, they referred me to gynae and after an appointment with the gynaecologist (ovarian cancer was ruled out) in which I described the symptoms and the extensive family history he said it is more likely endometriosis but that they can only be sure by surgery which they are hesitant to do.
From my experience the best way is not to take no for an answer. Keep pushing your gp and make sure you tell them how your symptoms are affecting your life. To be fair to them, surgery is always avoided because of the potential risks but it’s up to you. It’s your body and your national health. You know best. Good luck x
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