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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think that GPs should know about endometriosis?

65 replies

Cerseirys · 28/09/2015 12:55

The Guardian has several articles on the condition today (this is one), and I am gobsmacked by the number of women who've given their stories and said that their GPs told them that it was all in their heads, or that their doctors hadn't heard of endometriosis. These poor women have suffered unnecessarily for years. I'm not sure how a doctor couldn't have heard of this condition - perhaps it's one that truly does need an awareness-raising campaign?

OP posts:
NameChange30 · 28/09/2015 12:58

YANBU. I think there are several health conditions that aren't included in GP training and that GPs don't know or care about precisely because they are conditions that only affect women. GPs can't know about every single health condition but they should know about the most common ones and I believe endometriosis is quite common. I think in general GPs are notoriously bad at dealing with anything to do with women's reproductive health. Obviously not all GPs, and hopefully the training and awareness are improving.

atticusclaw2 · 28/09/2015 13:02

That article doesn't say that GPs don't know about/haven't heard about endometriosis, it says that most of the general public haven't heard of it.

You're going to get good and bad GPs in the same way as you get good/bad people in any profession. Personally I have been to the GP today with pelvic pain and my GP has been fantastic, seeing me straight away immediately doing a pregnancy test to rule out ectopic pregnancy and then taking bloods etc. I am literally just waiting for the bloods to come back this afternoon and have been told to prepare for maybe having an ultrasound this afternoon.

IcaMorgan · 28/09/2015 13:09

Trouble is even the ones who do know about it won't believe that's what it is. I spent 12 years trying to get diagnosed before they accepted it was endometriosis and then a further 6 years trying to get them to do something about it. One gynae I saw wasn't interested in sorting it, all she was interested in was sending me to infertility clinics to get pregnant even though she had told me that if I got pregnant I would lose it (the 3 miscarriages by 9 weeks bore that out too) and refused a hysterectomy because I was too young and didn't have children (because I couldn't due to the endometriosis). It took her leaving the hospital and me seeing another gynae whose first response was an immediate hysterectomy to get it sorted. I suffered for 18 years before seeing someone who would help

Cerseirys · 28/09/2015 13:14

That article doesn't say that GPs don't know about/haven't heard about endometriosis, it says that most of the general public haven't heard of it.

No the article doesn't, but several women who've shared their stories have said that that was their experience.

OP posts:
atticusclaw2 · 28/09/2015 13:20

I'm sorry to be argumentative but no actually it doesn't even say that.

One woman says that she was told by her doctor that it was in her head. That means that he didn't feel her symptoms were indicative of endometriosis not that he hasn't heard of it. The other comments are more general in nature about it potentially taking a long time to get a proper diagnosis.

Im only pointing out because its a different issue and you're talking about raising GP awareness through a campaign. If GPs had never heard of the disease that would be both astonishing and something that needs addressing through education. If GP's are not immediately suspecting the disease and first ruling out things like appendicitis then that is a different issue (although eminently sensible given that appendicitis/ectopic pregnancy etc are immediately life threatening and must be ruled out first)

OurBlanche · 28/09/2015 13:46

As atticus said, the article does not say that GPs are ignorant or oblivious, it highlights the lack of money for research, scarcity of extant research and a continuing stoicism in sufferer that makes it hard to quantify.

So yes, an awareness campaign would be good: for everyone, to increase the amount of money being made available for further studies.

elementofsurprise · 29/09/2015 22:30

I spent three years having excruciating period pains with sickness, diarrohea, shakiness etc. and saw several GP's (two female) at my surgery who all fobbed me off saying it was normal. One even said it was a good sign because it meant I was fertile. Hmm It was the practice nurse who referred me to a gynaecologist in the end.

Even then, the (female) gynae fobbed me off - so I went through PALS (only dared because she was actually rude and said factually incorrect things). Then, I got a letter from a male gynae that brushed off my queries, including not understanding why a diagnosis was important because he couldn't see why the disease might affect work. Yeh, cos missing a day or two of work every month throwing up and in agony is just fine with most employers... Hmm (I bet the benefits system is a nightmare for this - what do you do if you can't keep a job because of this?)

Fortunately he then left and a new gynae arrived who's a specialist in endo! Was offered a laparoscopy after a brief phone conversation (he seemed to read my notes differently from the others...)

I know I'm not the only one who's struggled to get past the GP. I also have other symptoms which all make sense in light of the affected immune system etc. I was specifically told by one GP that there was no connection... Mind you, it was only reading the Guardian articles that made me realise all the other little things are probably due to endo... So next time I see my GP I will politely remind him of this so he stops thinking I'm a hypochondriac. I guess you can't expect GPs to be experts in everything, but the current situation is certainly not good enough.

lilyb84 · 29/09/2015 22:41

My sister has it. No doctors believed her symptoms, or claimed they were normal or in her head. When a specialist finally listened and agreed to do surgery he found it was the worst case he'd ever seen. She'd been suffering for nearly ten years.

Baconyum · 30/09/2015 04:40

14 years undiagnosed despite textbook and dangerous symptoms

1 year treatment

3 babies lost

2 Gp's post diagnosis never heard of it

1 gynae never heard of it.

Diagnosed and treated while overseas. NHS useless!

I also have a fair number of friends with a variety of female health issues who've had similar experiences. I've been told:

Heavy periods - I'm exaggerating, I'm imagining it, over estimating it, just unlucky

Pain - ditto plus must be a wimp, all women go through this, low pain threshold (yet I've been through 27 hr labour and a twisted ovary and they hurt less)

Anaemia - must have had d&v I'd not noticed, don't eat enough, don't eat right (blamed on veggism even though worst times were before I was veggie).

Fainting - over excitable (aka neurotic/hysterical female), blamed on other things

Back pain - blamed on and investigated for other things, exaggerated etc etc you get the idea.

howtorebuild · 30/09/2015 04:55

I just started a thread in feminist chat on the issue of poor health care in Women.

www.psmag.com/health-and-behavior/is-medicines-gender-bias-killing-young-women

Yabu op.

KateSpade · 30/09/2015 07:26

That's me, I've been to see my GP countless times. Nothing has ever been done.

I'm normally in excruciating pain for two weeks a month.

My periods are that bad that labour was nothing in comparison.

I've given up now, I try and deal with it as best I can.

Pregnancy eased the symptoms - my midwife told me it was often the cure, but it's come back!

NameChange30 · 30/09/2015 11:31

It's unbelievable, and unacceptable, that some GYNAECOLOGISTS haven't heard of it.

softhedgehog · 30/09/2015 11:38

I think there are several health conditions that aren't included in GP training

and you are basing that on what exactly? There is a standard curriculum and it certainly includes common things like endometriosis. Of course there are good and bad GPs, but there won't be a GP in the UK who hasn't heard of it.

Cerseirys · 30/09/2015 11:39

For some reason I've not been able to get to this thread for a couple of days, but am sorry to see that I wasn't wrong and that some doctors really haven't heard of this condition :( The Guardian's coverage from earlier in the week was quite extensive and even though the article I originally posted didn't mention GPs not having heard of endometriosis, there were other articles (and BTL comments) that stated this.

OP posts:
NameChange30 · 30/09/2015 11:41

That's GPs being trained now. But what about GPs who were trained years ago? If there are GPs who haven't heard of it (and I believe the women who are saying that) it means it wasn't always on the curriculum.
As to how gynaes haven't heard of it, it beggars belief...

softhedgehog · 30/09/2015 11:42

Well I've been a qualified GP for 10 years and it was most certainly on the curriculum then. The days when any old doctor could walk out of medical school and set up as a GP are long gone. And of course it is taught at med school.

Baconyum · 30/09/2015 11:49

I first had symptoms 30 years ago. Gynae I saw was 13 years ago. I complained about him. Shouldn't be relevant but he was foreign and could barely speak English. I get about being welcoming etc but honestly the appointment took way longer than it should have as a result and he physically hurt me during the internal exam and snapped at me for saying so!

The first gp I saw just put me on pill and a medication to reduce the bleeding and figured that was job done. I was just a kid and knew no better but he was an experienced gp and should have referred me to gynae considering I was fainting, had migraines, severe pain as well as the bleeding. He also diagnosed first mc and STILL I wasn't referred.

I have a dd now, I'm keeping a close eye, if she has problems I will be insisting on a gynae referral.

Having scanned the article linked briefly it doesn't surprise me, most gp's attitude to women as patients AND as representatives of child patients and carers is appalling!

ukgirlatheart · 30/09/2015 12:25

When I realised my pain was 10 times worse than labour/child birth I KNEW that it was something more than period pains. My GP (female) said straightaway that it was endo and explained it all to me (I HADNT heard of it before).

Was referred immediately to a gyno ... all good so I thought, BUT THIS IS WHERE IT FAILED ME.

The gyno was a "GENERAL" Gyno who saw me (in fact specialises in teenage pregnancy and c sections!!!), quick scan then booked me in for a lap 2 weeks later. Was told after the lap yes you have endo and a small cyst on your ovary but Ive had a good fumble around whilst I was in there plus a bit of releasing of old scare tissue from an appendix operation from 30 years ago so all should be fine.

I was so relieved and delighted that I was "sorted" BUT 6 weeks later pain came back just as before in fact worse. I was at work and nearly passed out, came on so suddenly and within 2-3 mins the pain was at its height. I was so angry Angry

So I got to the internet and did my own research, time and time again it came back that YOU MUST, MUST BE REFERRED TO SOMEONE WHO UNDERSTAND AND IN FACT SPECIALISES IN ENDOMETRIOSIS.

So I did, I found a private consultant who luckily also had an NHS clinic, so I rang his Secretary who told me what NHS slots he had free. Armed with the information I went back to my GP and insisted I get booked in there and then. Ive been seeing him for 3 years now, and am managing my pain, also found out the miscarriage I had and long time to conceive again was most probably down to Endo. (So blessed to have my one and only now). I am now down to an annual scan and visit now to monitor what's going on.

My advice would be to research your own local consultant, dont get fobbed off, insistant you get referred to who YOU want to see.

PatricianOfAnkhMorpork · 30/09/2015 13:01

This shouldn't be happening in this day and age [anger] As PPs have said we get fobbed off for all sorts of women's health issues particularly if its about periods.

I've tried to investigate my own period issues through my GPs on several occasions and have now completely given up. Crippling pain that can make me scream, bloat so bad I go up a dress size, lethargy, flooding, two days where I just want to curl up and not move. Female GP refused to refer me to a gynae specialist using my private healthcare. Repeatedly told to have a Mirena coil, shut down any discussion about taking the lot out as I'm "too young and might want children", ignored the investigation completely when my bloods said I was diabetic T2. A nurse who would only talk of pads when I only use them as back up, refused to look at the diary as it wasn't on her pretty chart. Utterly fucking pointless.

I'm lucky as my monthly hell isn't anywhere near as bad as some of the stories on here. It now looks like I'm peri-menopausal at the age of 43 and I really don't want to even try and talk to the GPs about it.

NameChange30 · 30/09/2015 13:02

Patrician bloody hell (no pun intended!) change GP!!

WhoTheFuckIsSimon · 30/09/2015 13:05

Not endometriosis but I was told by a urology consultant that all my pain and symptoms were in my head. Doesn't mean he hadn't heard of chronic urine infections, he just thought I didn't have one. He was also wrong and ive since been diagnosed correctly.

I should think that's shat happened to that woman......she goes to the GP complaining of various symptoms. GP thinks it's all in her head for whatever reason. Doesn't mean he hasnt heard of endometriosis.

I do think though that if Drs are struggling to reach a diagnosis they shouldn't just dismiss it all as psychological......I think they can be too quick sometimes to do that.

AttilaTheMeerkat · 30/09/2015 13:30

I now know that I have had endometriosis since onset of menses at 14 but it simply was not recognised. My mother had no idea what was wrong with me and was reluctant to seek medical advice.

One of endo's many problems is that it is usually only diagnosed through a laparoscopy i.e. keyhole surgery. It was only recognised in my case when I had this type of gynae surgery for another fertility problem.

I think some GPs are woefully ill equipped knowledge wise when it comes to gynae issues and I always would advise any woman with cyclical symptoms to see a properly informed gynae (and if endo is suspected, preferably a gynae with a specialist interest in this; women should ask outright) and not take no for answer. I have also had a GP tell me that endometriosis is not a common condition; infact its the second most common gynae problem seen in women after fibroids.

PatricianOfAnkhMorpork · 30/09/2015 13:32

Emma believe me I'm going to. Unfortunately none of the other surgeries near me have particularly good reputations either. I'm at the point where I'm looking at going to a private GP (completely non-NHS) if only to be able to get appts long enough to even talk some of this through.

Christ Simon that's awful.

Its interesting though as we see similar things come up on the threads about pre & post natal care. Where paracetamol is the painkiller of choice post CS or stitching that leaves your bits looking like Frankenstein's Monster on a bad day. We get dismissed as imagining it, exaggerating, low pain tolerance. Doesn't matter what we say we get fobbed off. How can this still be the attitude of HCPs primarily towards women?

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