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?

I still treasure the memory of going to a male GP aged 15 to be told "you have painful periods, get on with it" such a lovely special moment.

Numerous doctors since then dismissed it, I was told all women have periods and some find them painful.

I then had one lovely amazing female doctor who took the time to listen, I was 26 and she was the first person to ever say, hmmm this could be endometriosis. I had never heard of it.

She referred me to a gynae who specialised in endometriosis. He was kind, and gentle and sympathetic. And finally a laser laparoscopy for the confirmed diagnosis rather than a yes we believe it is endo, this confirmed it. So I waited 11 years.

I am now 41 and have two miracle children all thanks to that amazing gynaecologist and the drugs and the surgery he performed. Thank you Mr R. And I hope the other GPs who I saw over the years have had more training.

My sister was told by her gp that it was perfectly fine to bleed from her back passage during her period and it should clear up in 5 years.
And if that had been his butt?

I have endo and based on all the endo forums I frequent, there seems to be a lot of anecdotal evidence that women do get fobbed off for many years. I personally started going to GPs 10 years ago and was told it was IBS, just part of being a woman, it would stop in my 30s etc (it didn't - it got worse) They did ultrasounds etc but I know now that ultrasounds don't diagnose it. Eventually one female finally GP suggested endo, but told me it would be a 5 month wait to see a specialist, then another 5 month wait for any diagnostic surgery. I love the NHS but did feel a bit let down at that point, especially after miscarriages and a couple of years trying to conceive

Then I moved abroad, and achieved a) a referral to a specialist, b) diagnosis and surgery for removal of endo and c) pregnancy all in the space of 2 months!

It's hard to blame GPs exclusively though, there are clearly bigger issues around awareness and fundraising. Even my mum used to think I was a wimp for wanting to be off work during a period, and told me to get over myself. I doubted myself and started to think I wasn't as 'strong' as other women!

With surgery being the only way to diagnose it's natural that the NHS would want to explore other options first I guess, but with me when other problems were not found they just never took it any further, so I suffered for 10 years. Maybe I should have pushed harder, idk. But I feel so sorry for women who suffer constant debilitating pain, or who may want kids but not be able to - it can be a desperately awful and lonely disease.

I too have endometriosis and it took years to get a diagnosis or for them to even mention it was a possibility. I was in chronic pain and I was unable to eat yet was very bloated. I had to do a lot of the leg work with going back and forth from the doctors - they thought it was IBS and were happy to leave it at that but I kept going back. After an exploratory op they gave me my diagnosis and treatment promptly started soon after. I definitely think more awareness needs to be generated for this - I have had doctor after doctor not be able to answer my queries or take my symptoms seriously or tactfully (one doctor told me i should have children as soon as possible as it would help clear it up even though I was single at the time!!). After a year of treatment that is near completion, I am keeping my fingers crossed that my symptoms will ease and that more awareness will be raised for this health issue. Although I appreciate that doctors need to rule out other potential diagnoses, I do think that the years we have had to wait and suffer in alot of stress (both mentally, emotionally and physically) should be significantly reduced.

It took me 10 years from onset of menses to sitting in the gynaecology department. During that time I got the usual "all women have it", "you must have a low pain threshold" and "just take the pill".

I've had two surgeries and a course of hormone treatment to replicate the effect of the menopause. I am currently pregnant with number one, and hopefully, after number two I will get a hysterectomy.

I found it hard to get pregnant and at the moment I get random painful tugs as the old scar tissue stretches on my uterus. I have been warned I might find the babies movements quite painful because of this, as also because of additional scarring on the ligaments which support the womb.

If it had been treated sooner, who knows how much pain could have been avoided.

Honey - towards the end of my pregnancy I had SPD to the point I had to go for physio as I could hardly walk some days. AGAIN only a few years after it came to light that this could of been down to the endo ie damaged tissue, stretching etc...

It makes me angry that I had to do my own research and find my own consultant - in all it took me 3 weeks. But when I went armed with the information and insisted this is what I wanted to do it took 2 mins to book me a referral on the GP's computer

I have endo as does my dsis , both our diagnoses were delayed due to the fact we were very close growing up and thought out severe period pain was normal as we both got it so badly

Also I confided in her once about the dreaded 'period poo' and how much agony going to the toilet caused me (it was worse than childbirth I realised years later) she had it too do yet again we thought it was normal

She collapsed one month and was diagnosed then shortly afterwards I was too but our gps were fantastic and quick to refer us

Reading this thread with interest as I awaiting a lap to confirm diagnosis and hopefully remove some endo.
I thought it might be interesting to other sufferers and anyone else interested in this, to point out that my consultant thinks that endometriosis is very common. He told me it is very often age related and in performing laps on women over 35 they generally expect to find some level of endo, regardless of symptoms. Haven't seen that mentioned on here or in the guardian but thought it might be of interest to some.

honey I used a big wedge pillow to support my growing bump when sleeping and an SPD velcro belt thing to help during the day. My ligaments were all scarred very badly on one side and the weight of the baby hurt like hell.

In labour take any pain relief offered

I went through the fake menopause thing at 27 years old, 6 months of that and HRT. But it enabled me to get pregnant (well the hormones and then surgery) Ds1 is 12 and Ds2 is 9.

YANBU. I've had terrible pain since I was pre-pubescent - at 11 I got rushed to hospital as they thought I had appendicitis only to be told it was the first of (many) 'mysterious ovary issues' that cause me to pass out, vomit, you name it. Terrible gastro issues, all cyclical, some measure of pain all the time during sex. I just get on with it now. I've been told my options are a) take the pill (side effects unacceptable for me) or b) have a baby (yeah right on my salary). They seem to be utterly unwilling to do anything until you have a confirmed problem like not being able to conceive. No idea how you'd go about changing it

Whatastink I don't think age of diagnosis can be relied upon as evidenced by this thread (but also others and endo society anecdotal evidence) we've most of us had symptoms since we started our periods but as we didn't know any different wrongly (and supported by many mag articles, gp's etc) assumed it was normal and we were being wimps/didn't understand that was how much we were meant to be bleeding etc

My own mum (not a suffered) didn't even take me to the Dr till I'd passed out at school from the anaemia and then was taken home, developed a migraine and slept for 20 hours straight. It was only in the drs office she learnt how much I was bleeding, felt terrible and said I should have told her. No web then so I was reliant on teen mags for discreet info where problem pages and articles only ever said 'everyone's different. It's more painful for some, some bleed more for longer' etc. No guidance on what was healthy. Gp assessed I was losing up to a pint of blood a day no wonder I was sodding anaemic!

I've always been convinced I have this,periods started at 12 and were horrendous from the start.
same pattern every month,days in bed,pain so bad I wanted to just die,throwing up on the third day when pain was at its worst,backache,clots etc,dr called out in teens said all normal,missed loads of school over it.
finally went on depo injection for about ten years which was heaven,came off and periods were relatively pain free for six months,then had dd1 and they stayed bearable for first year,then got really bad again,dr wouldn't give depo anymore so had to go on pill.stopped after 5 years to try for dd2, conceived her after 9 months.
Dd2 is no 3 years old and the periods are as bad as ever,can't look after the children,can't work for first 3 days of period.
Because I've been sterilized,the dr has only offered painkillers or said I could possibly have copper coil,would really like a hysterectomy,think I'll do what a lot of you lovely ladies have mentioned and research consultants and go and beg gp for referral

Thanks for pointers ladies! Will bear in mind as bump gets bigger.

Has anyone actually had a hysterectomy? I do worry that of course although it's radical, its not necessarily a cure.

baconyum sorry, wasn't making myself clear. I didn't mean that age should be used as part of diagnosis, I've certainly had a horrible time from 13. What I meant was that I found it interesting that the consultant claimed that he found in surgery that most women over the age of 35 would have endometriosis to some degree. It was something I'd not seen documented and thought I would share.

Like Pp, my period pain was so bad I would throw up, pass out and occasionally shit myself. Great for trying to keep a job. I bled through a tampon, a pad and my clothes on a 45 minute journey to work. Sex was painful and my husband stopped trying. We're divorced now.

Things i was told by HcP:-

It's muscular, I cannot help you (gynae consulant)

Some monthly discomfort is normal.

Do you mind if these students do an internal exam while you're here

I fought and fought and had two laparoscopies, but only because I am in a high risk group for ovarian cancer and they wanted to rule that out. When I came round after my second laparoscopy i had a hand- shaped bruise on my abdomen where someone in the theatre had deflated me.

I have a diagnosis but was offered no treatment. A very wise GP suggested a mirena coil when i was about 38 and it gave me my life back.

I agree 100% with others that GPs are too ready to dismiss problem periods as something women just have to live with.

I got my endo diagnosed easily enough (in my teens) but wasn't offered much in the way of treatment. I don't know whether that's because there just wasn't much to offer or if it was bad practice. My GP put me on the pill at 15 and prescribed strong painkillers (which I couldn't take as they made me sick) and seemed very surprised that this didn't do the trick. I have had a few different GP's since then and most have seemed to have a good understanding of the condition.

UK Treatment seems to be focused on getting and maintaining a pregnancy. I found a couple of great books from the USA which set out a much broader range of options including hormonal therapy, diet and holistic approaches. But the Mirena was all i needed in the end. No periods, no pain!

honeysucklejasmine I finally had a hysterectomy 4 years ago after 22 years of hell and it's the best thing I ever did. I had the full thing, womb, ovaries and cervix taken out.

Imustgo I was diagnosed in 2000 and had a great GP who said to read everything I could on it.

I looked at it from the view that the doctors were going to do everything they could so I should do everything I could.

I overhauled my diet, read this endo book as well as several others.

I underwent acupuncture, tried chinese herbal teas, anything to stop the pain.

This was because I was in the NHS system, GP then gynae but then junior doctors etc and finally due to a quirk of Dh's job we both got private medical insurance.

I was booked in to see the original gynae who examined me after I had just finished 6 months of hormone therapy that put my body into fake menopause. He said I had an aggressive form of endo (I had been on pure progesterone before the hormone therapy) and asked me if I was free for a laparoscopy the next day I told him work would need notice of any surgery, so 8 days later I had my lap.

There is a wealth of information on the web, which wasn't available 15 years ago. And truthfully I count myself incredibly lucky. I have 2 children and managed to change my lifestyle so that I don't suffer anywhere near as much as I used to. I no longer work, we live on Dh's wage alone. That means on bad days I can potter around, no one expects anything of me. I have a TENs machine and some codeine for when things get rough.

I was told yesterday that pregnancy would help my endo. What are you supposed to say when a professional is there in front of you saying stuff that isn't true? How the hell do you get any help?

And the gynae who did the laparoscopy was great, and a specialist - how can the people working under him be so crap?

I'm really worried about this. I can't deal with hormonal birth control - I was exhausted and suicidal with the mirena; this is no exaggeration, I had to have it out after three weeks because I couldn't get out of bed and was so close to hurting myself.

Putting up with the pain/vomiting/shakiness for a day or two a month, taking it easy wrt the general tiredness and more illness from lowered immune system.... having the shits for a couple of hours most mornings... needing to pee quite a lot... that's ok right now, because I'm already not working due to mental health. However, what do I do when I go back to work? How do I keep a job? I'm virtually unemployable as it is, this just takes the biscuit.

I'm really frightened - how will I survive if I can't keep a job? I can't see myelf getting decent statements from professionals about the other effects of endo, and even wrt the pain I'd be seen as 'refusing treatment' by not taking hormones. So no benefits. Even if I could find work I'd be very vulnerable to getting fired for the same reasons.

It took 10 weeks from first symptoms - a very tendor lump on my abdomen, till my diagnosis. The pain coincided with my period and I had a diagnosis, from a gynae and a fix - surgery. I declined and requested looking at other solutions but the gynae had his head fixed on surgery and although I had private healthcare he offered to operate on the NHS too, my GP was brilliant though and couldn't understand why surgery was so urgently needed. My pain was so easily controlled with painkillers. That was 10 years ago....the pain just went away by itself...and I was very glad not to take the advice of the consultant.

Notoedike you are very lucky! Quick diagnosis and easily managed with painkillers is almost unheard of! What a relief for you.

Thanks for sharing Ica. Think I will definitely push for one in a few years.

Honey I had dreadfully heavy painful periods before my pregnancy, it never occurred to me that it was possibly a condition, I also had IVF due to male infertility - but maybe I was infertile too...they assumed I acquired Endo from my C section.
Maybe my diagnosis wasn't accurate, my periods became very very light after pregnancy...I don't know - I do know that I didn't want surgery to correct something that was fairly minor for me but the consultant didn't appreciate me questioning his approach and I'm bloody glad I did because now I am symptom free.
I do wish some doctors could learn to listen to their patients a bit more. I didn't want or need treatment but it's clear lots of woman do.

Absolutely, listening is so important! I live in hope that my post partum periods are a painless dream. Otherwise its a quick (fingers crossed!) second child and a hysterectomy.

I hope it works for you Honey