To think that GPs should know about endometriosis?

[Cerseirys]

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?

It took me 10 years to get diagnosed. With my regularly vomiting,collapsing not being able to get out of bed and in chronic pain. When I was (at 21) the consultant laughed at me and said "I could always have a baby!." I found it extremely insulting and refused to go back until I was 23 where I went on really strong pain meds which made me feel like a zombie. I have fertility problems and am currently waiting to start ICSI. I have found that accupuncture really helps the pain like nothing else has but I was never recommended it by any doctor!

Beauty that is so awful.
I think I was diagnosed so quickly because I had a painful lump rather than period pains, the painful lump was not associated with my period and I worried it was cancerous. It was a fluke that I saw a Gynae consultant first but is it the nhs which ignores the needs of women - I was lucky I was private but how awful for other women who are told to just suck it up.

I was diagnosed with endo at 21 having had symptoms since starting my periods and more severe symptoms for 3-4 years prior to diagnosis. My endo affects my bladder and I was in excruciating pain for two weeks out of four. I had multiple swabs taken and just told no infection repeatedly. Then I moved house, saw a new gp and was immediately referred to gynea with suggestion of it being endo or interstitial cystitis. Several useless courses of treatments later and it is now under control with use of nexplanon implant which has been a god send for me. I was told at time of diagnosis that it is very unusual to be diagnosed so young and that if I had been under 21 I wouldn't have been disgnosed with it even though the surgery showed I had clearly had the condition for quite some time.

Slight tangent but I am at GPs in general at the moment. I have just read about them being given cash incentives not to refer patients to specialists. Absolutely appalling.

I also read about the staffing crisis being down to a shortage of GPs. It was suggested that this is partly explained by many, many GPs retiring early or working full-time (because they are paid so much that this an option for them more than it is for other jobs - in fact they are paid so much that they can retire on full pension at 60 and there is a financial incentive not to continue to 65).

This is a contributing factor to the GPs who are left in the job being 'overworked'. That said, on the issue of being overworked, it is difficult to think of an job in the private sector with a comparable wage (apparently the average salary for a partner GP is £102 000 per annum) that doesn't require very, very hard work. On average, apparently, most GPs work 8-9 hour days seeing patients with approx 1 hour admin and a couple of hours (at most) at the weekends. I don't know if this is true because I'm not a GP myself, but I do think that the hours sound reasonable for the wage. Given that high figure salaries are not keeping GPs in the job and it would be better for all GPs if retiring early and working part-time was not quite so appealing, perhaps it would be good for the profession overall if they were paid less.

And then we have the plethora of anecdotes like the ones here about endometriosis that suggest that all GPs are not, in fact, over-worked, competent, diligent, pleasant people but rather that some of them get away with a high level of incompetence because the client - i.e. the patient - is unable to easily complain to any objective party. A missed diagnosis does not seem to be routinely picked up on and addressed in the way that a slip-up would be dealt with by a boss in the private sector. In fact, there doesn't seem to be much, if any, monitoring going on by senior partners. I eventually correctly diagnosed myself in 90 minutes on the internet and paid for a private referral to a gynecologist; this is not the first time I have correctly worked out what is wrong with me and found that the only way to see the appropriate specialist is to pay because the GP did not agree.

There are many professions in which professionals work day and night - yes, sometimes on jobs that directly or indirectly a matter of life and death - for a salary that is not much above the living wage. At least GPs have evenings and weekends to recover in their very nice houses and very nice cars - and holiday homes, in the case of my GP. Unless they choose to make an absolute killing working evenings and weekends.

Rant over :)

I was diagnosed with stage 1 endo and suspected adenomyosis a few years ago. I've had the symptoms since I was 10, I'm 25 now. I'm single and considering co-parenting with a friend but fucking terrified of trying because I fear I may be infertile. After all the shit i've been through in my life I have to deal with the likelihood of being barren.

My own mother was a fully qualified doctor but despite that and my cousin having severe endometriosis no one joined the dots together when I started suffering from extreme pain during periods.

When I first went mid twenties about it I was put on back to back cerazette which certainly got rid of the symptoms, but it was only when I started trying to conceive DC2 that the real problems began. Eventually I was referred for a scan where the woman was very abrupt and basically said it was a small cyst and shouldn't be causing that much problems.

Luckily I remembered I had private medical insurance through work and got booked in for a lap privately where they found Stage 4 Endo that was all over my bowel so couldn't be removed on one side. I ended up on injections that put me in menopause for six months and caused me to have severe depression that was in many ways worse than the endo - doctor and consultant vehemently denied that it could do that, but hey ho. I'm not in pain now as I take back to back cerazette again but couldn't have DC2 in the end. I count myself lucky to have DS and not to be in constant pain.

I think doctors probably do know about Endometriosis, but it's costly to investigate and treat properly, it isn't life threatening and there's no real cure apart from menopause. Therefore they go for the cheap options first i.e. back to back pill and to be fair in many cases that works provided the woman is not ttc.

It's not taken me too long to get a diagnosis thankfully (less than a year) but along my journey I encountered a gynaecologist who seriously made me feel like I was making it all up. I explained that every month I would get intense, agonising pains in right arm that would completely debilitate me for a day or two on the same days of my cycle. "That's completely unrelated, nothing to do with me" was her response. I explained that it had happened for years and it had to be linked to my periods. "No, definitely not, completely unrelated. Perhaps you are making connections that just are not there" she replied. I left the appointment thinking I was going mad.
Then a few months later at a follow up appointment with a different gyno I mentioned the arm pain, her response "that is a totally typical endometriosis pain, lots of women suffer pains in their limbs linked to the cycle!" So how the hell did that the first gyno not know that?! Why was I led to believe I was going crazy and making things up?!
Absolutely ridiculous.
The first gyno also put me on the pill despite my insistence that in two months time I wanted to start TTC. She said I needed 6 months on bc before I could try. Now I'm stuck trying to get my cycle back to normal after 6 months of artificial hormones being pumped into me.

Katy - being on the pill might not have been a bad thing. We conceived DS almost immediately when I came off the pill despite one side of my womb being rendered useless by Endo as my consultant subsequently explained that you get some sort of rush of hormones when you come off it after a reasonable length of time.

There is nothing worse though than being made to feel that you're complaining about nothing - that's how I felt after my first scan, turns out what could be seen on an external scan was the tip of the iceberg quite literally and my pain threshold must have been high to cope with what I did.

Good luck with your TTC.

Thanks for the positivity Rookie! I'm crossing my fingers. I came off the pill at the start of August and it took till the start of September to have a period, now it's a waiting game to see if the next one arrives (on my old pre-pill cycle it would have been over and done with by now) or if I am in face pregnant!

Katy due to my non 28 day cycle and having had 6 months of fake menopuase, then laparoscopy, followed by 3 months of the mini pill I saw my gynae for follow up appointment and he said to me that I had an aggressive endo and it was back despite all the meds and surgery.

He told me to come off the pill and immediately try for a baby (I was 29 and had been married for 4 years) and 2 weeks later I was pregnant.

My symptoms have massively reduced since pregnancy.

Element I know you were told pregnancy would help and you didn't believe it but you need to understand how the hormonal cycle works and why pregnancy and for that matter the fake menopause help. My eldest son is 12 so this is all massively in the past for me, but if one particular hormone medication doesn't work, try and swap it for another. You can't live like this. Try acupuncture if you can or reflexology.

Katy back to you again, once I had had Ds1 my symptoms were a lot easier to deal with, so when we ttc dc2 I had no idea when I ovulated. We bought cheap ovulation predictor kits off ebay. I did a urine test starting 10 days from my last period (my cycle is anything from 23 days to 32) and it helped me know what day held the best chance for conceiving.

Tbh there's a lot that GPs don't even know about! Where do they get their training from?
It's okay if you're a bit sick with a sore throat but if you actually have a severe problem, they have to search your symptoms and still have no idea. Maybe they'll give you some sort of placebo, but usually send you away thinking you're being stupid!

I think the dumbest thing a GP has said to me is (she didn't bother checking) 'Okay, there's nothing I can do. But come back in a couple months to talk to me about how it's going'... WTF would be the point in that?

So I don't trust them now really. They made me suffer for years for not giving me the right help.

Unwilling - I've been using OPKs and they've worked really well. Could really pinpoint the day I ovulated and now I'm massively crossing my fingers! Had the crappiest day ever and the Ovia app has told me I'm 1 day away from doing a pg test so I thought I'd do one today to either cap my day off with even more crap or to cheer me up. I think it may have come up with the very faintest line ever but I'm hoping that it is really there! Crossing my fingers, eyes, toes, ears etc as if it is a line then it means I've conceived on our first cycle which would be amazing!

I'm still largely sure I have endo, however after 20 years of crippling periods and extremely low ferritin levels they did discover I had fibroids. I suspect this is as well as endo, but at the moment the gynae has made my periods largely disappear (miraculous as I'd tried everything other than this and it had all failed miserably) plus given major osteoporosis issues in my family a hysterectomy is not an option for me yet.

Over those 20 years I got all the usual lines. Its meant to be painful. That's being female for you. Suck it up. Some people just get them worst than others. Try the pill. Try getting pregnant. You're imagining it.

I finally got the fibroid diagnosis by being referred by a locum. In fact all my recent diagnoses for long term other problems have been thanks to luckily getting a locum appointment, all of which sent me off for tests with genuine concern.

With family members with endo problems, myself with auto immune conditions, friends with diabetes and other issues its beginning to seem endemic that you're being told our symptoms don't exist. Or for those of us over the age of 35 - its the menopause, suck it up.

Well my BFP turned into a BFN today and then along came some lovely brown spotting so my guessing is a chemical pregnancy. I'm devastated.
I've been googling (terrible idea, I know) and it turns out endometriosis can cause an increased chance of chemicals. Now this fun news to hear... not!

I'm sorry to hear that Katy

sparkle I'm just turned 30 and female gynaecologist suggested to me my symptoms were perimenopausal . And I'm already diagnosed with endo ffs!! And she is working under the endo specialist (ie. my appointment says it's with the specialist but see one of his useless minions.)

I just cannot get anyone to properly record/believe the symptoms beyond painful periods - I have daily "must run to the loo NOW" moments, general tiredness and when this is bad if I don't rest I get flu-like illness. It all adds up but they just think I'm a hypochondriac! I actually said, I know you can't do anything but I want this recognised/recorded in my notes!