Is there anybody who, like me, feels that the poor treatment and delayed diagnosis of Endometriosis is an example of SEXISM?

[Scooteeder]

I know this may sound stupid, or controversial... but it's something I can't help asking myself... so, I felt I'd try and find out what others think.

I have Endo (finally diagnosed after a long fight, in 2011). I've had 4 lap surgeries so far. I've been misdiagnosed and fobbed-off in the past. I truly feel that the only way I managed to get an accurate diagnosis was by fighting, and fighting, persisting, and pushing for answers - until the point where I honestly believe that Doctors saw me as a "nuisance"!

I've posted on here before, and from what I've seen in my own posts and in other people's, women with Endo get a raw deal. On average it takes 7 years just to get a diagnosis. Meanwhile, women are just left to cope alone with both the physical and emotional effects of the illness. They may be in pain, constantly fatigued, bloated, nauseous... They may survive on a cocktail of painkillers and other pills/potions. They may fear infertility, suffer painful periods, struggle to conceive and be left worrying if they will ever have kids. They may have painful sex, causing problems in relationships. They may be tired and worn out all the time, prone to infections, and lacking energy. They may struggle with a whole range of symptoms (some of which are pretty awful and embarrassing) including diarrhoea, urinary problems, heavy/painful/irregular periods, mood swings, adhesions, nerve pain...

Furthermore, they ADDITIONALLY have to struggle with the impact of these symptoms (especially if untreated). They may have problems at work, or in their studies, with unsympathetic employers or colleagues. They may miss out on social activities or hobbies. They may have problems with family and friends who just do not understand the illness. They may be mis-diagnosed or not diagnosed at all. They may be incorrectly labelled by Doctors as having "stress", "anxiety", "Irritable Bowel"... They may be incorrectly told they are "malingerers" or "hypochondriacs". They may be accused of "making things up", "fussing", "being mental"... they may be told "it's just period pain" or "it's all in your head"!

WOULD this happen if Endo seriously and regularly affected MEN? Or is this an example of SEXISM? Of SEXISM in the healthcare industry? Are there still people out there (health care professionals included) who think women are "worth less" than men? Who believe women SHOULD be "housewives" and firmly "behind the kitchen sink"? Who feel that women need not work, so the impact of Endo on a woman's career is not important? Who feel that women should rely on men as "breadwinners" and should thus not worry about Endo symptoms affecting their lifestyle? Are there people who truly believe that women are the "weaker sex" and therefore cannot tolerate pain? That women make more of a "fuss"? That women are "neurotic" or "hysterical"? That women are more likely to suffer anxiety and depression?

Personally, I believe that SOME people DO hold these outdated beliefs - AND that SOME of these people can be found (inappropriately) working in the health care professions. I believe, myself, that women and men should be equal, and have the same right to good health care. I believe that women's lives, careers, hobbies, loves, interests, passions... are JUST as important as men's. So, with women making up at least 50% of the population, does it not make utter sense that they get treated fairly, and equally?

Anything that NEGATIVELY AFFECTS WOMEN, ends up NEGATIVELY AFFECTING SOCIETY. This is what I believe about the failing to diagnose and treat Endo efficiently, quickly and effectively. Women's lives are NOT "second rate"!

If anyone reads this, and it strikes a chord, PLEASE do tell me what YOU think. I'd LOVE to know just what other women feel about this issue - and about what might be done to address it.

Thanks in advance,

Elaine.

[wp22]

I agree 100% with you.... Imagine if 1/10 of men suffered from even just one of the symptoms we do, ie painful sex then this would be at the top of the priority list and would soon be sorted. Everyone would know about it and they would have sympathy. It makes me mad the way we are just left to get on with our lives of pain, mental torture, infertility, inability to enjoy a s.x life etc and the list goes on. I hate to say it but this world is run by idiots for idiots and most of them are men. They don't have a clue... X

[Seaside1 in reply to wp22]

I definitely second what wp22 has said above. Spot on!! In my experience it is not just male doctors but I have also found that female GPs (with no personal experience of endo) have not believed my pain which barred me for getting diagnosis and treatment for way over 10 years. The top endo experts here and in the US are men and they really do understand, but unfortunately those type of doctors are so few and far between. Generally I think the nhs is too behind on training its medics and providing effective treatment in the endo field. Conditions such as diabetes are much less common than endo in the UK yet all doctors (and the public) seem to be way better informed about it than about endo. Let's hope things will change soon! x

[Mabes]

I also agree. I don't really know how to put into words what I feel but suffice to say, I have other health problems (am currently awaiting lap to confirm suspected endo) and as a result of those I've met females who, like me have had hysteria or psycho-somatic put on their medical records. I have yet to meet a man with the same medical problems who has this written in his (although the odds are there must be some out there). These are proven medical problems with visible biological abnormalities yet somehow women who have them get labeled in this way... I just can't stand it.

As a result, I have totally lost trust in the medical profession to the point where I've put up with such severe pain and bowel/bladder issues for the last few years, knowing that something that's been lurking for years is getting worse, purely because I was too scared and anxious to go consult a doctor as I felt that I would not be treated right: will not be believed, will be fobbed off, will be told it's all normal to be in this housebound state when bleeding (which happened before -apparently it's totally normal according to GP). I finally went last December and have fought tooth and nail to get the lap. All they want is to just stick me on the pill. If this was a man with similar problems with his male anatomy, I don't think he'd have to fight to get a diagnostic op and I doubt he'd happily take a pill not knowing what was actually wrong and then deal with the side effects of the pill on top of everything else.

[amybird]

I think that if this problem was suffered by men for even a fraction of the time then it would be a routine referral and treatment.

My problem wasn't looked at for years until I finally saw a female doctor who told me it was outrageous that I should be in pain for 50% of my life. At that point the only symptoms we were discussing was the pain and fatigue but she got it straight away. Up until that point I had seen male doctors, all of whom had just given me pain killers and a kind of "what do you expect, you're a woman and have periods so deal with it" kind of attitude. It was this female doctor who got me referred to a gyne and low and behold it was a male!! he sent me for an ultra sound (reluctantly I might add) and it showed I had a bicornuate utereus. So he told me that all my problems were down to that and proceeded to try and convince me to have a mirena coil fitted. I really didn't want one fitted as I really didn't like the idea of a foreign object in my body and just didn't feel comfortable with it. He got really pithy with me and basically said it was the only thing that would fix me. So I went along with it but I had to have it removed after a month as I was in agony (again, no one belived me and I had to start crying and be quite forceful before they agreed). It turned out my bicornuate uterous was pushing the coil into my cervix (!). Fast forward 2 years and I have just been to see another female doctor who has informed me that my symptoms don't match just a funny shaped uterous and with all certainty I have endo. Now I have researched it I can't beleive I haven't been told this before. I have been going onto doctors for years about pain, loss of blood, constant fatigue etc and not one doctor mentioned this condition.

I am now waiting for a referral but have been warned by my female doctor that I will have to fight to get a laroposcopy.

So I totally agree with you that the health care system is behind the times on how to deal with female only conditions and I am very angry at the moment that my diagnosis has come so late. Espeically as I work in a male-dominated industry so have had to hide my suffering A LOT over the years as I was being told by doctors I was basically just a woos! Now I have this diagnosis I have been able to talk to my male boss who has been brilliant about it and discussed working form home/flexi hours etc. But without a clear name to put to what I have been experiencing I haven't been able to have that conversation before.

PLUS, I am 33 and have no children but do want them. If I had been diagnosed early I may have made different choices and my partner and I could have tried earlier. We are now worried that if I do have fertility issues we will be too late.

So to sum up - yes I agree with you!!!

[Mabes in reply to amybird]

It's interesting because I am also finding it difficult dealing with the male gynaecologist and doctors. The females have been far better - they actually listen properly for a start. The problem is, so many of the gynaes are male! I'm 33 and I also feel I'd have made different decisions about children if I'd been taken seriously years ago and received earlier help/diagnosis.

[hayls]

Although I agree that we are fobbed off for far too long..... I have 2 male friends with crohns and they struggle with doctors in the exact same way as we do so its not typical to endo, but I would guess that its pretty typical of all similar conditions/the NHS! x

[Hidden]

Not sexist.... Just the result of an over stretched NHS. With doctors and other "professionals" who have the compassion of a lump of coal.

My husband was left in agony while waiting for a hip replacement! It took 8 months to get the surgery!

[Brownlow]

I agree with Barbara. The nhs is overstretched and underfunded. Many people with other illnesses, whether they be male or female, struggle to be heard and get treatment worthy of a human. We will always encounter sexist people wherever we go and yes, I'm sure sexism is encountered when it comes to endo but the reluctance to listen and treat applies to many non-female illnesses. I don't have facts to support this view but that is my perception.

The more pertinent issue I think is money. If you can afford to go private or have private insurance you will be treated in a nanosecond.

Lack of education and real awareness of endo are also at the root of the poor treatment.

I suspect that the nhs is being purposely starved of finances and resources driving many people to go private. That's my conspiracy for the day.

[Hidden in reply to Brownlow]

I agree with your conspiracy theory Brownlow!

I worked in the NHS for many years and saw this first hand

X

[Scooteeder]

Wow! Thanks... I'm utterly blown away by the responses. Thanks for having taken the time and trouble to think about the issue, and to articulate what you all feel. There are some seriously interesting, and very perceptive, points raised here. Just goes to show that PATIENTS really DO know what they are talking about - that they have insight and intelligence that matches that of any so-called health care "professional" (in some cases, a damned site more insight and intelligence!). I just WISH that I could somehow ask all health professionals to look at Forums like this, and to read comments such as these. They truly demonstrate that

a. Women know their own bodies.

b. Patients know their own symptoms, and patterns of symptoms.

c. Patients, both male and female, can ask pertinent questions and raise pertinent issues.

Thus...

PATIENTS REALLY OUGHT TO BE LISTENED TO.

Whether we believe, or not, that the medical professionals' failure to respond adequately to the issue of Endo is a sexist matter... it does seem evident that sexism plays a part. That perhaps we live in a society where, superficially, we are all "progressive" and "21st century"; but where, in reality, it is STILL taboo to talk openly about sex and other body functions, and it is still considered impolite for women to talk openly about boobs, bums, genitals, libido, incontinence, infertility, menstruation... in fact, many of the things that affect women with Endo, or are affected by Endo. Yes, we can have MEN ogle women and leer at them in Porn Mags, or at lapdancing Clubs... but if a WOMAN is seen to talk openly about things such as sex, or her sex drive, or her menstrual cycle she is considered "slutty", or just downright "weird"! Somewhat of a double standard, there!

However, I am also TOTALLY in agreement with those whose responses indicated that they thought there was also a wider problem within the NHS and Social Care system, that is affecting all patients - BUDGET CUTS. I fully accept (as I used to work within this system) that it is underfunded, overstretched, short staffed. I worry that staff who are rushed off their feet and pushed to their limits may

a. Neglect patients

b. Leave the job

c. Burn out

I worry about a system that rejects change. That bullies "whistleblowers" and those who want to improve services and care. That relies on foreign migrant workers to fill gaps in job vacancies. That thinks patients can be treated just as "statistics" and not fully as HUMAN BEINGS.

There is just SO MUCH that could be improved... and I firmly believe that improvement can only start happening once PATIENTS ARE PROPERLY LISTENED TO, AND HEARD.

[LeyaC]

My partner had testicular pain and it was investigated within two weeks and we had a result which was he had had trauma which his body played over and over again. He had tests and scans within a week. With me, I fought for two years to get to see a gynae who said I was too young but still did a lap and reluctantly told me there was a "bit of Endo but not enough to suffice for the pain" then the next gynae said its the trauma remembrance thing but I'd had no trauma and then the third just kept fobbing me off with pain killers, only to find she wasn't a gynae but a pain specialist. I've had the story, "its only period pain, you're a woman, deal with it" or "its all in your head, here's some anti-depressants" I think you're right on the mark Elaine!! Its a disgrace how we are treated and it ought to change! Glad you wrote this and hope some professionals see it so they see just how they make us feel!! Xxx

[Jelly67]

I agree 100% about the sexism. Although there is a wider problem in the NHS, I am also convinced that if men suffered with endo there would have been a long history of research, more funding, wider public awareness and far, far more gynaecologists practising effective treatments (ie excision and tppe) instead of laser, mirena coil and drug treatment. Also, GPs would recognise the symptoms, we wouldn't have to wait so long for a diagnosis and we wouldn't be dismissed as neurotic hypochondriacs. It makes me furious too! You're not alone with these beliefs. Hopefully things will change for future generations of women. Mind you, it must have been even worse for women many years ago.x