To ask how I can get a bloody endometriosis diagnosis???!!

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Have been trying for 5 years to get diagnosed. Back and forth with incredibly painful periods, painful sex, have been in hospital with a burst cyst on ovary that led to sepsis, have tramadol on repeat prescription for it, take anti spasmodic (is that the right word?) tablets for it, etc etc. They will prescribe me things to temporarily relieve the pain but won’t actually diagnose me with it officially so I can’t get proper treatment! I am in agony. Have had to get transexamic acid from a&e 3 times in the last year to stop periods being so heavy, tried the implant and the pill etc to see if they would alter anything but now ttc so can’t try other contraceptions.

I am sick to death of this. Sent home from work today as I was bleeding so much and in so much agony that I could barely stand. Went to my gp again and all they did was give me bloody buscopan!!?? Do I need to go private??

Just feel tired of it as especially with the painful sex I feel like it’s going to take a toll on my relationship as I am just in pain all the time and it’s bringing my mood down a lot. Any advice would be amazing

Gold standard for diagnosis is a laparoscopy. It really is a lottery of you're in an area where women's health is taken seriously and if you have an endo specialist locally.

Have you ever been referred at all?

It can only be diagnosed with a laparoscopy (or 8 in my case before they admitted it). Are you under a gynaecologist?

Which area are you in? Took me 8 years to get diagnosed. I have a couple of recommendations throughout the country (I currently travel about 70 miles to see a proper specialist (not the pretend specialists at my local hospital) x

You need to push to be referred to a gynaecologist as a laparoscopy is only way to diagnose endo. I finally got my diagnosis at 37 and by then it had done untold damage and meant expensive treatment to have my longed for family. No woman should have to put up with periods which stop normal life like work and sleep. Your GP should arrange this but consider private if you need to. Good luck.

You really need a referral to a gynaecology team, from there they would do a laparoscopy to check what was going on.
I had to really push my GP to refer, in the end I was hospitalised because of it, and A&E made a recommendation in their discharge letter to the GP that a referral was made as a matter of urgency.
I hope you get somewhere ASAP

I was referred last year and was meant to see a specialist but got a letter changing my appointment to a ‘gynae specialist’ situated in a random gp in the middle of nowhere who scanned me and said there’s nothing wrong 🥴 I’m in Edinburgh at the minute. Just seems like it’s a topic nobody will listen about??

Sorry you're suffering.

You need a referral to one of the centres on the BSGE's accredited list. There should be a centre reasonably close to you - I can't post a link so easily on this phone but you can Google 'BCGE endometriosis' and find their page which has the list on it. You have the right to choice in where you get referred. You really need to push for a referral and don't agree to be seen elsewhere because the treatment in a non-specialist gynaecology clinic generally isn't as good.

Good luck.

Sorry, cross post - there is an accredited center in Edinburgh. In the specialist centres they are much more alert to the fact that it often doesn't show up on a scan - though generally they also have access to more specialist people to scan you, which can make a difference.

Thank you so much for those suggestions! I have just looked through that bcge site and found the Edinburgh centre. Will I still have to get a gp referral for that? I think that’s the part I’m struggling with. I don’t understand what it is, but every gp I’ve seen seems adamant that I don’t need a referral

Scanned you?! Endo doesn't show on a scan. Goodness me.

It really does need a lap to rule it in or out, not a bloody scan.

It makes me so cross.

It took 13 years for me to get a diagnosis, and I only got it by seeing a specialist privately. This was in the 90s and I would have hoped things would have changed by now! Ask for a referral to a private consultant, and don’t take no for an answer.

Referral to gynae consult and a lap to diagnose - mine took years to sort out also and as a PP, it’s done all sorts of things detrimental to having a family to good to know where you’re at with it.
I’ve also had a MRI post lap whereby you can see the endo too but certainly it can’t be seen by a regular scan.
Good luck

I would go private. I tried for 10 years to get a diagnosis on the nhs. They even sent me to a gynaecologist who did zero tests so therefore couldn't diagnose. Despite me insisting. One visit via private doctor was tested and diagnosed in the same week. It's worth the money. Just do your research to make sure you go to a well reccomended/reviewed consultant . Have a look online

Andrew Horne is one of the top Endo guys in Edinburgh, but you would need referral. www.ed.ac.uk/centre-reproductive-health/professor-andrew-horne

An ultrasound can only diagnose Endo in expert, experienced hands and there aren't many of those! Laparoscopy is the gold standard. Here are the NICE Guidelines for investigation and referral. You could quote them to your GP!

www.nice.org.uk/guidance/ng73/chapter/Recommendations

As others have said you need to get a referral to a BSGE centre, and a laparoscopy to diagnose. If it’s really bad you can see endo on an MRI though too.
GPS are reluctant to send you for specialist endo are in my experience so you’ll have to push hard. They’ll try to fob you off with a scan which doesn’t show endo.
It took me 25 long years to be diagnosed a few months ago with stage 4 endo. such is the extent it showed on MRI and I have had one laparoscopy and waiting for the next. I would say move quickly especially if you have bowel or bladder endo as this can get nasty and damage can be done.
Very best of luck xx

Goodness OP. I know the struggle. I've had all the classic horrific symptoms since my periods began at 11, but nobody would bother to invest in me except by giving me more painkillers. The minipill managed to stop my periods for the most part so I'm fine now, but I never did get any investigation done into why my periods were so bad, only things to treat the symptoms.

Thank you so much everyone!! You’ve all been so understanding it is so so nice to talk about this and not have people basically imply I am stupid and lying about symptoms. I will go back to my gp in a week to show I have ‘tried’ the buscopan (for the millionth time) and it has still not worked (obviously). And will put my foot down about a referral. If that doesn’t work I think I will just have to find the money from somewhere and go private.

You could try just going private for the initial consultation with a consultant ( probably £150-200) who could then add you to the NHS list for a laparoscopy if they felt it was needed - and as a fellow endo sufferer it sounds like it most definitely is.

Sorry you are suffering - it definitely sounds like endometriosis is very likely. Also be mindful that it could be adenomyosis instead/as well, something doctors are even less knowledgeable about.

There is an excellent Facebook support group called EndoRevisited which has lots of advice and helped many women get a diagnosis.

My diagnosis several years ago was achieved in a roundabout fashion as I had an emergency laparoscopy due to suspected appendicitis and instead they could see my endometriosis.

Personally, I would fork out for a private GP appointment.
Mine is amazing and they will genuinely have the time and facilities to look after you, and they will want you to leave happy, because after all you're paying for their service

I had Tranexamic acid Once this year it was awful and so painful - good luck ttc and at lease it would stop for 9 months

I did have to go private in the end. As others have said get. Private referral back to NHS - I know wait times are long for laparoscopy in some areas x also Nancy’s nook on Facebook American site and UK endometriosis support Facebook group. Also one for adenomyosis too and these go hand in hand Often, I’ve got both xx

I was diagnosed with adenomyosis from a scan in August and just saw a gynae who confidently diagnosed me with endo too, said a laparoscopy wasn't necessary. Not sure whether to feel relieved or furious? Feel a bit of both? Had this for 21 years and struggled to get anyone to take it seriously and while this might be a "diagnosis" it seems really casual....

I was actually in there to ask for pain management and didn't get any useful advice - he just tried to push medical menopause on me over and over again.

Any tips on how to manage the pain without upping my painkillers gratefully received.

I’m in Edinburgh and have had a nightmare.

You need to be referred to a gynae with an interest in Endo. This isn’t the same as the BSGE centre. BSGE deals with complex cases - you might be in that bracket but that won’t be known until you have a diagnosis.

There is a private endo clinic at Spire Shawfair every Monday which will set you back about £200 for an appointment. I’m not sure if you need a GP referral.

PM me if you want - endorevisited is a great site on Facebook too with lots of U.K. info on diagnosis and treatment options.

Good luck.