GP refusing to refer dd16 to gynae (possible endometriosis related)

[WindyWendyHouse]

Since DD16 started her periods at the age of 12 they have been very heavy. 4 years on they are getting worse and more painful. They last 7-10 days and sometimes come every 2 weeks. She floods (through clothes/bedsheets etc) and basically wants to stay at home the whole week. It had a huge effect on her school life and she is about to start college in September. She is also frequently anaemic despite taking iron.

Over the last few years we have been back and forth to the GP. She has struggled on with tranexamic acid but they upset her stomach and they don’t reduce the bleeding that much but it’s her only option atm.

Last year the GP suggested the mini pill. Dd can’t take the combined pill as she suffers from aura mingraines as do I and most on my families side (mum/sister), we also have a stroke risk on my side so progesterone only meds are advised. Sadly the mini pill gave her acne, headaches and made her very moody and low, after 8 months she wanted to come off them. So she is limping along on the TA.

We went to the GP yesterday as her anaemia symptoms are getting worse. We saw a different GP this time as ours is on mat leave. I asked if dd could get a referral to a gynae because both my sister and I have endometriosis and my symptoms started off as DD’s.
The GP said no.
She then went on to ask why would I want to persue an endometriosis diagnosis because the treatment would be no different to anything she could prescribe. I replied that I had seen the top endo gynae in our area recently for my own issues and he told me he has many 15/16 year olds with endo and the earlier the diagnosis the better. I said to the gp that IF (and obviously we don’t know for sure) dd has endo just sticking her on contraception for years on end without fully knowing for sure is just a masking it all, the endo will still be there and it can cause all kinds of issues such as infertility, gut issues (I know this all too well sadly), exhaustion etc. The GP said that if I want to go down this avenue then I’d have to pay privately for dd. I said I can not afford that and a private laparoscopy is £7k. She just shrugged.

I don’t know what to think tbh. I feel really frustrated that dd may have to spend decades l, like I have, with awful gynae issues only to find it may be endo all along, years down the line.

Should I push this further? I found the GP to be very arrogant and dismissive but tbh I am not very assertive (hence why I have only just been diagnosed at the age of 50!).

I did the same.

Decades of issues and despite being under my local gynae hospital for 13 years I was never diagnosed until I requested an mri. When that detected endo and adeno I joined my local endo fb group and most people recommended one particular endo specialist, he runs from our local hospital (which is an endo specialist hospital) but his waiting times are very long. I paid to see him privately this year, looks like I will need to do this for dd too.

Print off the Nice guidelines and get ready to quote them at doctors, inc the gynae staff when you get there.

dd has similar symptoms and can’t take the pill due to previous clots. She actually got a referral had scans which didn’t show any endometriosis. Gynae tried to discharge her at this point but the guidelines are clear that if someone is symptomatic and even if clear at scan the next step is laparoscopy. Dd insisted on a second opinion and should be having a laparoscopy next month.

they can cut the endometriosis away if it’s there so that’s obviously a step further than anything a gp can prescribe

Oh and the gynae consultant is pushing Dd to have a mirena fitted during the laparoscopy. Dd very reluctant and they are being very funny with her about it. They can’t see why she won’t try it. In all honesty i can’t either but a respect it’s her choice.

I would ring every week till they agree to refer to be honest.
I was diagnosed a year ago with adenomyosis and im still fighting for them to look into endo too

www.nice.org.uk/guidance/ng73 www.nice.org.uk/guidance/ng73]]]]

Ask them why they’re not following that.

You don't have to go straight to laparoscopy.

You can get a consultation with a gynae privately who will advise what he thinks is going on and what is worth trying:

So if he thinks it's worth trying eg Mirena first then he will be able to say for example that there is a hospital clinic that does it and he can also write to the gp recommending referral.

If he thinks surgery is the option then he can add you to the nhs waiting lists for surgery.

Cost of a consultation ranges from 200-500.

Use a moon cup-

Hi there - firstly apologies if this is repetitive advice - I didn't have time to read through all replies (toddler who loves to climb) but didn't want to read and run.
I suffered with similar problems to your daughter from an early age and was similarly given the brush off and messed about by GPs. In the end after collapsing I paid privately for a consultation with an Endo expert on my area (greater Manchester). He then wrote to my GP insisting I was referred under his care to the NHS hospital he also worked in. I had a laparoscopy with him under the NHS. Prior to this I was just being scanned repeatedly for a 7cm cyst on my ovary. This is one option so you aren't funding the operation privately, just the consult (£200-300 pounds).

I also used to volunteer for Endo UK on their helpline and unfortunately this is a common story. The NICE guidelines flow through what should be done and there are different guidelines sheets depending on age, whether you want children or have finished that aspect of your life. I have found the guidelines helpful with difficult GPs to the extent that when I've recently made appts (to get prostap prescribed) they don't resist anymore they ask what do I want them to do.

Although it shouldn't be something you have to resort to the private consult with an Endo expert was invaluable as he armed me with lots of info not just about the short term but the long term management. Also, his name it itself seem to carry a lot of weight so I found all of a sudden GPs who were gaslighting me somewhat now all of a sudden didn't question the letters from the Endo consultant. Its a sad state of affairs but to really did open the doors to getting the treatment I needed.

Wishing your daughter well - it's a terrible condition and you are doing the right thing pushing. I didn't have that behind me at that young age so unfortunately only got the operations and treatments in my early 30's meaning the damage done in that time resulting in having to have IVF.
Xxx good luck with it all xxx wish I had you at her age xx

I can't add anything to the excellent advice here. But I just wanted to share my anger and frustration at being fobbed off by medical professionals. I have a child with SEN and a range of allergies and honestly the disrespect with which I have been treated and the rolling eyes and the 'very involved mother' status i have SEEN on various letters etc has driven me crazy. Anyway, after fighting and fighting it turns out that yes my DS does have tourettes as well as everything else he has. He does have asthma. He does have an autoimmune condition. He does have a very rare allergy to the cold. He does have an airborne allergy to nuts and it was not my fucking imagination.

Rant over (for now). But FFS Gps are supposed to KNOW that endo is a real and debilitating and serious condition. Why can't they just refer on at least for your peace of mind? WHY? Particularly with the family history?

Oh also... transvaginal scans will only show up certain things. Mine showed a 7cm cyst on my ovary but nothing else. Even an MRI didn't pick up anything else it just concluded that it was defo an endometrioma ans nothing else. When they did my initial
Laparoscopy lots more was found, bowel adhesions, deposits and adhesions on fallopian tube etc.
The only thing to weight up is that each surgery will create more scar tissue which although different to Endo can cause similar issues. I've had two laparoscopies and at my emergency c section they commented on the additional scar tissue caused by surgeries.

Due to the above I have avoided what the NHS initially suggested which is using laser to remove the endo as this only removed the surface of it. My consultant (private) said it's like only dealing with the tip of the iceberg. So with him I had excision surgery. It's deeper and the recovery is a bit more but you remove more of the Endo to hopefully have a bigger gap between operations rather than lots of smaller surgeries.
Xx

hopefully, if the gynae suspects dd may have endo he may refer her onto the local hospital?

That was my thinking, @WindyWendyHouse. Just for info, I saw a consultant privately recently (not for this issue though) and she referred me back into the NHS system, so it can still be done.

I started my periods at 12 and they were agonising from the start. I too had the ‘it’ll be much better once you have a baby’ from the family GP. How consoling that was to a young teen in pain. I continued to be in agony every month until my late 40s when the issue got so bad (with a cyst - related to the endometriosis I’d never been diagnosed with) that a GP finally sent me for an urgent scan. Even then a follow-up GP tried to deny it was a problem and told me the pain was due to ‘constipation’ and IBS.

I paid privately for a laparoscopy and though everything in my pelvis was stuck together from scar tissue the gynae insisted there was no ‘active’ endo. It took a second, more specialist gynae to get my Stage IV diagnosis. So really, it’s like pushing a boulder uphill but you’ve got to keep plugging on.

Sending all the very best to your DD and you.

I was "lucky" on that that respect.

The first coil came out in clits after 6 weeks.

The second one they pretty much insisted I try lasted 6 weeks.

Thankfully they didn't try and insist third time lucky!

I'm another who says go back and push.

Also has she tried mefenamic acid. It's a pain killer that can also help to reduce bleeding. It's not a long term solution but maybe a helpful tool in the interim.

Also as odd this this sounds do you have a male GP (particularly a youngish one?) you can see?

I saw female GPS who pretty much indicated it was normal to bleed 8 hours out of every 23 and to lose clots the size of your hand 5 times in 5 minutes. That despite flooding through a super tampon and maternity is in 20 minutes "it's not as much blood as that seems".

I saw a male locum once. He was horrified about what my periods meant for me daily. He didn't think any woman having to change sanitary wear every 20 minutes every day was something they have to live with.

He made a referral there and then.

Turns out I had severe adenomyosis. I've since had a hysterectomy.

I would push for this. I had endo from early teens. Initially just very heavy periods but then the pain worsened as the lesions did the damage. By the time I was diagnosed in my mid ten ties I was stage 4 with badly damaged bowel and bladder.
The Mirena coil wasn’t available back then but after an 8YR struggle with fertility and recurrent miscarriage ( another common side effect) I had DS and then had Mirena fitted. I don’t know how I could have coped being a mother with the level of endo, the coil was a life saver. I had severe anaemia during pregnancy, the result of chronic heavy bleeding ( huge clots ) for years, I haven’t had anaemia in the last 20yrs.
The coil does take time to settle and after 4 yrs it usually needs replacing with endo but even if your daughter only has it fitted short term it could make her life much more bearable. The direct effect of the hormones it releases, locally, stops the lung of the womb building up and that of any endometrial cell plaques that are outside of the womb. Which in turn reduces the longterm damage.
It’s only going to get worse particularly the pain side as the ectopic bleeding forms more and more scar tissue.
I so wish the Mirena coil had been around when I was in my late teens/early twenties.

I remember an old Gp reassuring me that on average women loose an eggcup of blood during a period. I calmly asked if he’d like me to collect all the sanitary protection I used each month to demonstrate just how much I lost since if he was talking about an ostrich egg cup I would have agreed with him. As a dentist I was well aware of the volume of blood I was loosing and was more than happy to prove it.

I'm 32 and have been trying to be assessed for endo for years, I'm so glad your daughter has you to advocate for her.

I just assumed it was normal for years to always wear a large menstrual cup plus a nighttime pad and even then still leak within an hour or so. Or to faint every month with period issues. To have shooting pain down my legs every month and stabbing anal pain that takes your breath away. Or to have repeated heavy midcycle bleeding and be told its 'stress'. It wasn't until I had a miscarriage at 11 weeks and found the whole process lighter bleeding and less painful than a period that I realised my periods weren't normal.

The GP is incorrect in that the current gold standard for treatment is surgical excision - not hormonal treatment and not laser surgery - which the GP cannot offer. This is a stance which is backed by significant research. If the GP is trying to claim that there are no treatment options beyond primary care, they're woefully ignorant.

The problem with refusing to refer is that she gets no assessment in terms of her level of risk. You may be aware that if she turns out to have deep infiltrating disease, her risk profile is vastly different to someone with superficial disease. If I were you, I would start flagging up the serious risks of potentially having this condition without its being properly assessed. Incontinence, kidney failure, stoma, sciatic nerve damage... there is a long list, and being at the severe end of the spectrum is becoming increasingly common. Missing the window of opportunity for dealing with an early-stage problem can have serious consequences. Unfortunately, I know this to my cost.

A woman was fairly recently awarded a huge 6-figure compensation sum by the courts for unreasonable failure to diagnose, leading to major consequences for her. Just off to look up the case.

This was the case - many other articles on it if you search: https://www.leighday.co.uk/news/news/2020-news/500-000-settlement-secured-for-woman-with-endometriosis-which-had-been-left-undiagnosed-for-nearly-15-years/

I’d really recommend organising a private consultation. The consultant can then refer your DD to an NHS clinic for follow up via your GP (they write to GP as NHS referral has to come via that route, but even my useless GP has done as asked and referred to the right clinics). You shouldn’t then have to pay for treatment going forward.

I've done the same thing a number of times with my dc (not gynae), it’s the only way they’ve ended up with diagnosis and treatment as our GP dismisses everything and even when I got a referral through dentist to specific bone/dental clinic the subsequent NHS referral for genetic testing never went anywhere. The system is broken.

I did private consultation for dc with milk protein allergy and got NHS referrals to nutritionist and allergy clinic via GP plus NHS prescription milk in one consultation when I’d been back and forth to GP for 8 months.

This year I did a consultation with a paediatric orthopaedic surgeon for dc to find out about his legs, turns out he has a metabolic bone condition, that the NHS spent 6 years in various clinics saying he didn’t have. Within 2 months he had a private diagnosis and had had surgery. I did opt to pay for the surgery as it was urgent as has to be done pre-puberty but we did have the option to wait for NHS surgery so if we hadn’t been able to afford it could have gone that route. Surgeon did referral to a specialist within NHS vis GP who finally got the genetics done and confirmed and dc now has treatment starting on the NHS and a space in the right specialist clinic.

Meant to say initial consultations are in the region of £150-£300 for the doctors we’ve seen, best money I’ve ever spent, £300 was genetics but NHS were saying we’d have to wait 6months for their genetics results whereas private was 3-4 weeks so we did that to speed up treatment as my dc is in pain daily with his condition.

Does your go consider your dd to be overweight? Just wondering in case they want that addressed so avoid a gynae referral?

I agree that an initial private consultation is the way to go - they can then instruct the GP on what to do in the way of referral/investigations/treatments.

I do get heartily sick of GPs dismissing the utter misery of menstrua problems like this. How dare they!

Agree with this 100%. I've no experience of endo but have had private consultations with both gynae and GPs and they can refer you on an NHS pathway. It doesn't have to be all private or all NHS.

Another route that MIGHT be worth looking into is self referral to a sexual health clinic. I know that strictly endo isn't sexual health but it does mean you can access NHS gynaecology specialists without needing to go via GP. I've always gone straight to sexual health clinic with any contraception / bleeding issues. May not work for this referral but worth investigating?

Just adding to your post....

Years ago before laparoscopic diagnosis was possible the only way to diagnose endo was via laparotomy. The invasive nature of the procedure was rarely offered to teens and younger women so the medical literature recorded endo diagnosis of older women and that is how the myth that teens can't have endo was born.

I had endo symptoms since the age of 14, it got progressively worse as the years went on, by the time I was actually diagnosed with grade 4 endo and adeno at 46 the scarring and bulkiness of my uterus meant that a hysterectomy would have been high risk so they gave me oramorph to manage the pain. I'm no shrinking violet and still couldn't get a laparoscopy until I'd been suffering for 30 years and only then because they suspected ovarian cancer but adhesions from the endo meant they couldn't visualise both ovaries on ultrasound.

Keep pushing OP, make a fuss, it's unacceptable that women should lose so much of their lives to this disease because thorough investigation and effective treatment are rationed like luxuries.

You need razor sharp elbows, the hide of a rhinocerous and the forward thrust of a tank to get anywhere with gynae problems in the NHS. Women's health has never been a priority in the service and any kind of care or investigation is rationed almost out of existence - or as I was once told by a GP "its not cancer is it?" when diagnosed (privately) with endo at a severity that it could have destroyed my fertility as wel as general well being and health.

Fortunately not all GPs are like that one but the debilitating, life affecting gynae conditions suffered by women and other conditions which predominate in women are just not important and that pervades the entire culture of the service.

Go armed with all the information you can find, including NHS guidelines mentioned on this thread plus note books, making copious notes, ask them to confirm their reasons and write them down. It shouldn't be necessary but its hard to access investigations even with a good GP. Ultimately if you can get the money for an initial consultation with a private endo specialist I would do that. Free at the point of access sounds great but for too many women there is no point of access.

None of this is new - it was the same under previous governments and under high and low spending periods.