Hi all, I was diagnosed with endo 6 months ago. I had a standard ultrasound on my ovaries which came back clear. My gp thinks I have endo on my bladder and bowels along with else where and just tells me to take painkillers. I'm getting to the point i can not cope any longer and want to see a specialist and have a diagnostic laparoscopy. How did everyone else manage to get this to happen?
Thanks in advance!
Hi anon,
I was in the same boat as you a few months ago. After three A&E admittances in a week for pain, I went back to my gp and just demanded I be referred to gynaecology. I was seen by them within a couple of months and she gave me options and I went for the surgery. Had surgery within 2 weeks of that appointment. It is a long old slog but the relief I felt when the surgeon told me I had endo and wasn't crazy! Unfortunately for now painkillers it probably your best option until you can be referred 
surgery is the only way to diagnose but don't expect it all to be better after that, I had surgery 2 months ago and my pain is only moderately improved, I'm still struggling a lot. Once you know what it is though you can look at alternative ways of managing it. Hope you get the help you need soon
Thank you for the advice! I spent 7 years being told it was all in my head! I went to a&e and was told to leave and stop wasting their time!
Hi, how long did it take u to get the appt? I was hospitalised as i felt suicidal at one point thats how bad my pms gets! I was supposed to have an emergency gyne referral and a month later still no sign of an appt....
I waited about a month before I received the letter to book an appointment and then had the actual appointment about 2-3 months later. I was also told it would be booked in as urgent but when I rang them they said they simply didn't have any earlier appointments available so I was pretty much off work until I had surgery! Depends on your local hospitals availability I guess
Hi,
You are entitled to see a gynaecologist (who should be able to handle simple cases of endo) or an endo specialist, according to NICE guidelines (see below). A medical professional who thinks you have endo and just tells you to continue taking painkillers is not a good medical professional
Ask the GP to be referred, if you can (I know it can be difficult) show them the NICE guidelines, and if they disagree ask them to note it down on your medical record - apparently this accountability had changed the minds of many GPs.
You can ask the receptionist in your surgery who of the GPs are interested in women medicine - that what got me the referral.
Really recommend educating yourself through endometriosis-uk.org/, there's also a Facebook group called Nancy's Nook that has a wealth of medical information.
Good luck!
"1.4 Referral for women with suspected or confirmed endometriosis
1.4.1 Consider referring women to a gynaecology service for an ultrasound or gynaecology opinion if:
- they have severe, persistent or recurrent symptoms of endometriosis
- they have pelvic signs of endometriosis or
- initial management is not effective, not tolerated or is contraindicated.
1.4.2 Refer women to a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter."
nice.org.uk/guidance/ng73/c...
Thank you for the advice! I have been seeing the female health gp and I have been put on depo injections however they have said because it is on my bladder and bowels I will still get I'll evey month and to take the painkillers. I will try for the referral as this has never been offered! I'm getting to the point now where I cant even function like a human, even down to going to the bathroom and I am only 19
She is really not following the guidance - which isn’t great anyway, to be honest. In research, experts say that one of the main things that are making treatment difficult is GPs not referring on to experts and not taking patients complaints seriously - which she’s clearly not doing as you’re struggling ( here is a blog with research made more accessible for non-professionals to read endoupdate.co.uk/home/the-o....
Is there someone that can come with you to the dr’s? I’m very assertive (and older :)) and still find it difficult to say what I think at the dr’s, so if possible brief my mum or partner on what I want to get out of the appointment and they come with.
From what I’ve been reading, expert excision surgery - where they take out the endo lesions - is usually done by laparoscopy (key-hole surgery), is also diagnostic as they send the lesions to biopsy. This looks to be the only medical treatment available. Like others said here, for some it works perfectly and for some it doesn’t - it could be that a tiny endo bit is missed and left in and continues causing agony; or that the ending appears again after a few years: but it could also work to end the pain.
Best of luck!
I highly recommend you avoid diagnostic laparoscopies (they will cut you open just to get a piece of endometriotic tissue and send it for a biopsy, meaning you will wake up with all endometriosis still inside you and maybe in even more pain than before). I suggest you look into getting advanced excision surgery right away with a surgeon who will remove all endometriosis in one sitting, so that a month after the laparoscopy you will already get your life back completely! Please PM me for the names of the most experienced and well-trained excision surgeons in the UK working within the NHS. You will need your GP to refer you to them.
P.S.: GPs, regular GYNs or any other physician working in A&E are not trained to deal with endometriosis. Other than prescribing OC or drugs to cope with the pain, they won't be able to do much. You need to see a highly skilled and experienced specialist. Only they will give you your life back via advanced excision (with recurrence rates of less than 8% for the most skilled surgeons)
Sorry but can you please not tell people that by having excision surgery they'll completely have their life back straight away. Because that's not true for everyone otherwise it'd be known as a cure and there's not a cure for endometriosis. You shouldn't be telling someone that it they have this surgery that's it, they'll be completely fine afterwards as that's setting unrealistic expectations. For some that happens but not everyone.
I had a skilled and endometriosis specialist do excision removal on me and although I'm not in pain every day any more, I still have bad days and still get painful periods. Was the surgery worth it absolutely I'll take painful periods over everyday pain anyday. Would I say I completely have my life back no.
Of course endometriosis will not be cured, but the pain will subside immensely for years. The recurrence rates of successful thorough excision are roughly at 8-10%. I have never talked about getting rid of endo forever, I said they'd get their life back in terms of not being in so much pain anymore. Most women go off to doing things they could barely imagine to do after successful excision. Countless women thank excision surgeons for giving their life back in terms of energy and reduced pain, that's a fact, just like it's a fact it's not forever.
I cannot share their names here because of forum policy . and reading the "Surgeons International" file. They are all listed there. I just provide them via PM with the updated hospital where they practice for practicality and to help people who don't have Facebook.
I'm okay thanks I've been past of the group in the past but I saw them deleting people's reviews that were less than glowingly positive. Which to me made me question their entire ethos. If they can't let people share bad experiences aswell as the good then they shouldn't let people share experiences at all otherwise all you see is a very biased view with no scope of realism.
I'm not questioning that excision Dr's do good work, but to say to someone they'll "completely get their life back" is not accurate. Yes for some that is enough but you need to be realistic and tell people it helps and got some they completely get their life back but others it helps in one way or another but it doesn't solve all their pain or symptoms.
The issue with this would be that they dont fully know the extend of it, they believe it to be on my bladder and bowels due to my symptoms but they would be going in blind not knowing where they are going to have to operate on and cut away the cells. I was wanting to first find out where it is and the extend to then later once they know go in and take it away. I'm quite new to this and not fully educated in these things as I hadn't heard of endometriosis until they told me I have it 6 months ago
Hello
As your go suspects endometriosis on your bladder and bowel you should be referred to a BSGE centre these centres have specialist gynecologist who work with urologist and colorectal surgeons etc.
You can Google to find your local endometriosis centre.
Depending where in the UK you are depends on how you get referred here.
In Scotland only a gynecologist can refer you to these specialists centres. But everywhere else your gp can refer you and should.
The NHS NICE guidelines for diagnosising and treating endometriosis clearly state that anyone (regardless of age) with any of the symptoms for endo should be referred to a gynecologist. And if more complex areas are thought to be involved (bladder and bowel) they should be referred directly to a bsge centre.
If you are finding it difficult with your usual gp check if the surgery has a gp with an interest in gynecology and ask to see them. That's how I got my referral as they listened and knew exactly what they needed to do and did it without any pushing from me.
Hello Anon1846.
You may find some of the information on our website helpful, in particular the page dealing with getting a diagnosis
endometriosis-uk.org/gettin....
On this page you will also find information about the NICE Guidelines endometriosis-uk.org/NICE.
As some of the other people posting on this thread have mentioned, if you have suspected involvement of the bowel or bladder, then you may be able to get a referral to a BSGE accredited centre, you can find a list of these on their website bsge.org.uk/centre/.
It's also worth bearing in mind that everyone's experience of endometriosis is different and one person's response to treatment will differ to another. Exploratory laparoscopies can often be performed in order to assess whether a multidisciplinary team is needed for a future laparoscopy - and these would need scheduling into diaries!
I hope you find this information helpful and get to see a suitable specialist
Best wishes
Lynne - Endometriosis UK
How did you get diagnosed and how long did it take?
Hi all, I was just wondering how you was diagnosed with endo?
How long did it take everyone to get diagnosed?
How many of you work?
how do you deal with the fatigue?
