Doctor won't test for Endometriosis

[K833]

I'm in my early 30's and started getting painful periods when I was 17. Pain in my stomach, back, down my legs and generally feeling sick. It was quite severe, to the point where I would throw up so I went to the Doctor at age 17 and was told I would grow out of it. Now in my 30's I've gone back to the Doctor and they've said with raised eyebrow if it's that bad why have you waited so long. They won't test me as they say the waiting list is long. They said I might aswell get a coil fitted as if Endo is the issue it will resolve it. However, I'd like a diagnosis so I know my options, plus I don't want a coil if not endo. Sex is now very painful so I generally avoid it, concerned about my fertility, I'm getting pretty depressed with it all. Are the doctors wrong to not test/should I demand a test?

[Elsidee11]

hi k833, sorry to hear you’ve been dismissed 😞 it’s worth pushing your GP for a referral even if the waitlist is long. You can also request to be referred to a different endo centre (I believe you can check waitlists on the nhs website for gynae)

My personal advice would be to pay the £250 (if you can) for a private consultation and getting them to refer you back to the nhs. If you head to Nancys nook on FB they have a list of consultants in the UK. if you plan on having a family, it’s best to get ontop of things now. Good luck xxx

[Missy100]

Hi K833,

Definitely do not accept a coil if that is not the route you want to go down. It does help with some cases but doesn't in many, so telling you it will 'magically' cure all your symptoms if it is endo is really incorrect of your doctor. Is there any chance you can see another doctor, or is it a case of only having the one doctor (I realise that this can be an issue in some places).

I follow Camran Nezhat on IG and I would recommend checking the acct out for up to date and correct info on endo and it's diagnosis and treatment. You may even consider asking your doctor to look at the account after viewing it yourself. He has also designed an on paper test that he says is extremely accurate when you can not (or do not) want to go down the road with surgical diagnosis. You can find info of where to access it via his acct.

The wait times are very long to see someone who can and will listen to you and provide a lap for diagnosis. That does not mean you don't deserve to pursue one if that is what you desire.

I completely understand waiting to bring your symptoms up to your doctor. With all the gaslighting and people telling you that painful periods are to be expected, ect. it takes courage and often the feeling that you just can not put up with this anymore.

As for symptoms, in the meantime doctors can and should provide you options to treat your symptoms. There are pain killers, medications to assist with bleeding (Mefenamic Acid & Tranexamic Acid) and they can also offer progesterone (which helps some, but to be honest I got no relief on it and it caused me mental health issues, but many find it helpful) etc. As with any treatment, you should research it and decide if it is right for you. Many of them are not right for people with certain own or family medical histories so it is important to check this as well.

Your doctor should be ashamed for offering such poor, uneducated feedback on something that obviously is causing you issues. Sadly endo is not understood properly by many doctors and better training in something that affects 1 in 10 people assigned female at birth is definitely needed desperately.

After all this, I do wish you luck in getting better care and I hope you find my recommendation of where to get more information helpful as well. Don't give up, that is what they are hoping you will do, and you deserve some much more.

[Avourneen]

Sadly there isn't a simple test for endo. You need a proper trans vaginal ultrasound or an MRI done by a specialist sonographer whoscans for endo. It isn't something your GP can do, your GP sounds awful lacking in empathey and unwilling to help. Can you see a different GP at the same practice or can you change GP practice? You can get these scans done and see a consultant privately but it will cost about 400 pounds with a consultation. But in my opinion it would be worth paying and going to someone good.

If yu can't pay go back to a dofferent GP at the same practice and tell them you need an urgent refferel to a gynae. Fitting te coil won't resolce endo but might sreduce the pain but it sort of masks the endo and lets it keep growing. But perhaps this is now health strtergy as the waiting lists are so long. I would suggest you go back and remind your GP he/she has a duty of care and that not getting this looked into when you have repaetdly asked for a referrel is against all guidlines for endo treatment and is not meeting his/her duty of care.

Personally I would splash out and go to see a consultant privately they willofetn take you without a refferel ad the GP cannot refuse to give you a private referrel as it is nt costing the NHS anything.

I'm sorry you have had to go through all this it seems to be the same story for almost everyone, it is so common for GPs to be completely dismissive of womens pain and that just makes the difficulty of having the illness so much worse.

[SavageGold]

I'm sorry you're going through this. The medical system (the lack of empathy and care is unforgivable. If they don't diagnose endometriosis they can sweep it under the rug and don't have to face the scale of the problem. Sadly unless you want children and have a partner and have said you are struggling to conceive, gynaecology are not interested because they are not trained to deal with endometriosis properly. Helping women getting on with normal living is not part of the job description 😭

When I was 13 I went in complaining of pain and flooding and was fobbed off until I was 19. And even then when I was clinically diagnosed the treatment is hormones to stop the blood and then you are left to hang as you dry.

And they'll go through the list of hormones to try if each don't work. They'll do anything to stop you getting the operation you need and they hope that any cyst bursts on its own.

And as for painful sex... they'll tell you it's in your head and send you to sex therapist who just asks you week after week 'what did you try this week? Anything to report?' And tells you over and over again bleeding is not caused by sex. And eventually when you don't get better after a year they cut you off the therapists list.

Your best option is to switch Dr's or practice until somebody listens to you.

I demanded a 7th opinion from the right clinic in the hospital with the backing of a respected retired Dr who had opened the sexual health clinic and I was seen that way. I had to name drop or I'd never have been helped.

Good luck

[BloomingMarvellous]

Firstly the GP has not handled this appropriately .

a) irrespective of the length of wait a request for referral needs to be respected and ought to be handled professionally and efficiently.

b) The coil isn’t suitable for everyone in treating endo or adenomyosis and as you are young may interfer with your desire ( or not ) for a family and delaying proper informed treatment can reduce your likelihood of being able to have children if and when you do want them. There are plenty of studies underwriting this. The coil is regarded by many as merely a suppressor not an actual treatment. For some women it can promote endo as it drives the whole hormone level up a notch as one’s body tries to adjust.

c) Dismissal of you because you’ve come forward now rather than earlier is not a reason to belittle or withhold proper specialist care when asked. Turn it around and really the questions should be why aren’t there enough awareness programmes about, why is my/the practices communications with this patient so poor they felt unable to discuss these issues earlier with us and why don’t we run on going screening programmes with patients to ensure we pick up undetected cases ??? It’s not all one way ! So the blame the patient game isn’t really on.

Whilst understanding that your GP may have ‘poor communication skills’ and the ‘best intention’ it does not give you the care with informed consent from the people qualified to do so you are entitled to. “Have A Go Harry “attitudes by medics doesn’t help anyone in the long term, nor does it actually help the poor beleaguered specialist teams as they simply end up dealing with delayed cases and complications . Note poor scanning, ablations instead of incision, dismissal of pain and the consequences on mental health are all indicative of the lack of proper training, minimisation of women’s pain( “ go away and get on with it “ ) and the unfortunate decades of ignorance around this particular condition make this a picnic not.

If I were in your shoes I’d look up another GP in the practice, one who is trained in women’s health and go for a second consultation. Not every GP has done the course and even then it’s not always a guarantee of good care. I’d take a symptom chart filled in from Endo UK and leave a copy with them with a written formal request for a specialist referral and do your homework first to find out who and where that local team is. Your first and last priority has to be your welfare.

The dodgy bit ! If you have a silent, brooding burly, bloke you can take ( yes sigh, shouldn’t need to but it does seem to make a difference however good you are at self advocacy and YOUR treatment is priority into the consultation. They can be a uncle, grandpa, Dad, Bas from the local pub or partner as apparently the only requirement is gender , stiff stare and to be able to grunt “she needs the right care and I’m here to see it happens …” ) Funny how after 30 years of fabulous self advocacy on the back of a great education and being white middle class ( so chaps there is nowhere to hide here ) actual progress in care and treatment came when I took a bloke in to be the bouncer. It’s a gender thing lock, stock and barrel.

As the New York Times famously said endo has a branding issue. It’s gynaecology problem ( taboo), it’s a woman’s issue ( irrelevant) and lastly it’s ‘benign’ rather than cancerous ( unimportant) . Sadly your GP’s response falls clear into this trap and one worth putting in a formal complaint about when you feel strong enough and got your referral. Good luck 🤞

[HT267]

Hi K833,

You have a right to be offered a laproscopy for diagnosis and excision especially with longstanding symptoms. My story is very similar to yours pain since my teens told I was just unlucky and would improve with age. Pain worsened last year and was diagnosed by lap at the start of this year. Trust your instincts you have a right to know whether its endo or not so you know where you stand with fertility and general health too. Wishing you all the best

Ht267

[Endosufferer1]

Go find a specialist for endo and pay a private consultation to go faster to be on the list. Follow a specific diet for endo and take noni juice. You can also take an endotest (saliva test) but it costs £1000.