ARGH Show and Tell time!

[Lyz1224]

Hi guys,

So I have finally got in a bit sooner to see the GP - I have an appointment on Thursday morning, this will be the sixth doctor I have seen about my condition. I have asked to see someone that is related to Gyno, so they may have more of a clue.

As you know, I haven't yet been diagnosed with Endo however I have all the symptoms and even thought I had it about 2 years ago. I have spoken to my sis in law who's had it and a friend who told me on a personal AND professional level (she is a nurse) that she thinks I have Endo.

Basically, I want to tell the GP everything - I have my symptoms diary at the ready to show her how long I have been living with this UFO inside me.

But what do I say to really push them to do something about it this time. In the past 4 years when I have mentioned Endo I have had the following replies: (please note, none of these excuses have been exaggerated)

'No, you haven't got that' after no checks, no asking of my symptoms

'Your too underweight, that's why you have these symptoms - eat more' - I have started taking my husband into the room with me so he can back me up on the fact I am underweight but eat 5/ 6 meals a day.

'Some women just have to live with the pain and bleeding'

'If you have had it for as long as you say then it can't be that bad'

'It's the contraceptive injection, maybe try to the coil' - then being told by another doctor to not go on the coil because it would make my bleeding worse

I am sick to the back teeth with all these pathetic and unprofessional excuses not to look further into my symptoms.

How can I push this GP on Thursday to refer me to a Gyno because this is really starting to ruin my lifestyle, love-life with my husband and every day life.

I thank you in advance.

x

[emaweegirl]

I've had the "you're too slim" excuse too, but for other reasons, fortunately not for endo. All I would do is keep going back. Literally pester your gp every week until they take you seriously. You need to be referred to a gynaecologist and until you are, the doctor can't really help because they don't specialise in endo. My doctor thought my pain was ovary related but he wasn't really sure. After going to a&e and then seeing the emergency gynaecologist, he was able to determine endo. I wish you all the best with your appointment on Thursday! X

[Jabster]

I agree keep going to see GP and pester! I had to do this about 10 years ago to go get referred to rheumatology as I was 'too young' to have rheumatoid arthritis (yeah right! Anyone can get it)

Another option is to see a consultant privately and they might give you a GP letter to be referred to them on NHS. Might be worth the few hundred £

Good luck x

[Brownlow]

Hi Lyz,

That's a lot of fobbing off and ignorance to contend with. There appears to be a great deal of ignorance among many GPs about gynaecological issues and a real lack of awareness of endo. A GP related to gyno or even a general gyno are often similarly uneducated about endo so just be aware of that.

Endo is more prevalent in lean women. There is plenty on the internet about this.

eshre.eu/Press-Room/Press-r...

No woman should suffer with period pain. It's NOT normal.

In your pain and symptom diary also indicate where this has disrupted your social, family and working life.

The reason you've had it for as long as you have is because you have been fobbed off by 5 doctors and have no choice but to live with it and suffer.

You have the right to choose the hospital you want to be referred to

nhs.uk/choiceintheNHS/Yourc...

Some good information here too from the CAB:

adviceguide.org.uk/england/...

One of the most relevant items in this article:

"If a GP is unsure about a diagnosis, they could be found negligent if they failed to refer you to a specialist and you suffered as a result of this. If you have not been referred for a second opinion and have suffered as a consequence, you may wish to complain."

If you come up against a brick wall I suggest that you take this article out of your bag and read that paragraph to show you mean business. This is more relevant for your past GP visits. Hopefully you won't have to resort to this.

Getting diagnosed with endo is a real Catch 22 situation. The symptoms can be similar to other conditions yet general gynaes are often not sufficiently skilled to diagnose or treat and don't have the wherewithal to refer you on to an endo specialist. This can all take a huge amount of time.

I suggest that if the fobbing off happens again that you demand to be referred to an endo specialist. You've waited long enough. Mention your nurse friend with endo for what it's worth.

You have the right to choose which specialist you want to see on nhs. Choose one here.

bsge.org.uk/ec-BSGE-accredi...

bsge.org.uk/ec-BSGE-provisi...

These centres have the advantage of being multidisciplinary teams should endo have encroached on other internal organs such as the bowel or bladder.

The GP might try to treat you themselves with pill or other hormonal drugs but personally I do not recommend this without proper diagnosis. That's just my opinion and personally I would demand referral. Endo is very complex...that's why it has a specialism all of its own.

If all this fails then Jabster's idea would be the next best thing to do. Choose an endo specialist from the links above and go for a private consultation and then switch to nhs. It will cost you financially but will get things moving.

Good luck. x

[Lyz1224]

Thank you all,

fingers crossed things get sorted. I will keep you posted.

Best wishes

Lyz xxx

[PandoraPenguin]

Going back a bit I was passed from pillar to post (urology, colorectal, gynae) with no diagnosis, hints that I had IBS or it was all in my head, at the hospital. My GP surgery was supportive but clueless, they just kept me propped up on every increasing doses of painkillers and told me the results of the latest useless tests the hospital had ordered. When I found this forum I went in with the BSGE Centre information and basically said I want to use my patient choice (key words to use according to someone I know who works for the NHS) to be referred here for further investigations. Seeing an option they had never heard of my GP happily referred me; it took a few days as it took different paperwork than they were used to. The wait time was shorter than for gynae at the local hospitals and the BSGE Centre was helpful, friendly, professional and efficient; in other words everything the previous Drs I had seen weren't.

Last year I had a student who was presenting with endo like issues and I had a frank conversation with her and parents and said they should ask for the Endo Centre rather than messing with the useless local hospital. Sadly, she became too ill to come to school and the family moved away but I had a lovely bunch of flowers thanking me for the info, turned out it was endo and she had great service from the same centre. She is now much better and is back in education.

Push your GP into what you want as it is your patient entitlement. Print off the info on the centre closest to you in case they are not aware of it.

[princessk09]

Hey, you just have to keep going back and basically annoy the doctors haha, that’s what I did and I complained a few times for the gynaes I saw at the hospitals as they were so bad. One said I was too fat. Bearing in mind I’m healthy weight and only a size 10 haha. The excuses are endless like “you’re too young to have endo” “try losing 4 stone which won’t help the pain but will make you look nice” “you have to live with it as it’s normal” I’m like bed bound during my period in agony.

Think I’ve seen about 6 gynaes and a private one at spire who managed to get things going and ordered my doctors to put me on the list for a laparoscopy but I’ll be waiting up to 23 weeks for this 🙄