Attitudes from the medical profession regarding endometriosis?

Hi ladies,

Just wondering what your experiences have been with the various doctors, consultants etc you've seen, and if you feel you've been fobbed off for a long time, ignored, passed around the houses, or the timeless classic of being told that 'women's problem's are just something that you should cope with, and you're being a raging hypochondriac for complaining? I'd appreciated your thoughts xx

29 Replies

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  • yes yes and yes to all of the above. Fobbed off, passed around, told to put up with it, being almost made to feel like I'm making it up, and still no diagnosis for me xx

  • It's horrible isn't it? I started my periods when I was 10, and from the start I had horrible issues. Now I'm 25 I feel like finally I might be starting to get somewhere, but it's taken years of dogged determination and not letting them send me away. Have you been referred to a gyneacologist? xx

  • Yes 3 referrals 2 scans 2 laps various drugs etc. etc. and still it goes on. Recently had a mirena fitted so waiting to see if that helps with the pain x

  • Yes me too. Doctors are a total nightmare!!!! It's such a battle every time is go and see a gp, then it's a battle with the gyneas. Disgraceful and shame on them x

  • It does seem like it's a battle to get from one professional to another. It's so frustrating because it feels as though you'll never get a resolution. I've been refereed privately now, and I only just feel like I'm being taken seriously, sad the NHS can't match up xx

  • I am afraid its the way for most women - I was passed around for years and years - made to look like a total idiot and told it was in my head and that I should just deal with it. I think the ultimate was when I was in the gyno's room naked from the waist down being examined (toodle pip dignity) and at this point (baring in mind where the gyno was situated) I was told that he "couldnt see anything" and that its just part of being a woman and that I should deal with it and just take some pain killers.... I pushed for a lap, a year on and after I came round from my lap the sheepish surgeon came over (whilst I was still high as a kite) and told me "you are right you have endo over both of your ovaries".... needless to say it was a good job I was still high as a kite, bloody man! Problem is that because endo is still relatively unknown and untreatable many professionals dont learn much about it because to be blunt whats the point? its rare to find a good surgeon and a good doctor that will actually listen and take you seriously so if you find one hold onto them with everything you can! I dont like to speak bad of the NHS because most of the people who work for the NHS really are doing it because they are caring wonderful people because their hours are mad and their pay isnt great but I cant help but feel angry at the same time because we all get ignored due to the fact that our disease is linked with "womans problems"

    hmmm sorry that turned into rather a rant!- Happy Valentines day ladies - lots of love!!! xxxxx

  • Ha, rant away, I think we all need to from time to time! It's horrible when you know that you know your own body and nobody will listen to you. You start to feel like you're going mad and that maybe you should just get on with it. But you know that the pain is real and very often totally debilatating, how on earth can you just put up and shut up when it's destroying your everyday life? Hideous : ( xx

  • Hi Ali - in - Somerset, no I have had none of these experiences the other women are sharing and am quite frankly appalled. I went to my doctor having had 2 weeks of bleeding, and she sent me to the hospital for an ultrasound. There was a long wait but I finally got given an ultrasound in the summer and they found cysts. They then monitored these for a while and then I ended up experiencing chronic and persistent pain in November. The registrar saw me in December and said it looked like they needed to remove these and 'check for anything else; possible endometriosis" through a laproscopy which I'm having in a few weeks. The only negatives I would say about the NHS are that i) they are so busy you sometimes have to push to get a proper detailed answer. (But one doctor did the opposite, came in especially early to the surgery to check me out because I told her on the phone I was 'freaking out' with the pain. ) ii) The doctors I've seen have very different knowledge levels of endometriosis and pain control and what works. (I was lucky to get a GOOD doctor early on who gave me a combination of pain killers that worked. She also signed me off. Her bedside manner wasn't the best but she was a very good doctor and got me back to work with the drugs she chose! ) iii) The queues in the NHS are horrendous! I'm a school teacher and basically kept ringing the hospital saying I needed treatment asap because of my job (it's not easy teaching every day when you're spaced out on tramadol) I don't think it helped though because I have had a 2 and a half month wait for the op (about average evidently). I think we're all aware now of the squeeze the NHS are now under, but despite this I've been very lucky by all accounts to have found the treatment I have so quickly, and I have every faith in the surgeons at the hospital I'm going to (JR, Oxford) cos I know someone who had a lap done there a year ago and she said they were "brilliant". So it's not all bad in the NHS. I just want to find out why things are so variable and why for so many women on this site they are not getting heard.

  • I think this is the problem with so many of us - how do we carry on holding down a normal full time job and yet try and work through the crippling pain we suffer? Personally I don't want to be taking painkillers every single hour of the day, because that isn't a solution, it's just masking the problem and not providing any long term solution or relief. In my experience it's taken going back and back and not letting them say "Right ok...we'll see you in another 3 months", meanwhile the pain gets worse, I have more time off work and feel like jumping off a bridge! xx

  • Yes, you're so right, it shouldn't be like that. What I can't understand is why they seem so reluctant to do a laproscopy to find out what exactly is causing the pain. A friend of mine got one cos she couldn't get pregnant so they just went in for a 'look'. I don't understand why she had that option so easily and yet so many women on this site are, like you say, struggling with pain. I guess I've been lucky cos the scan showed up something clearly and my registrar was under no hesitation that she wanted me to have surgery. I hope you get somewhere soon. If not, come to Oxford cos they seem to be a bit more helpful. Take care, x

  • Mm, they are reluctant when it comes to laproscopies. I had to bang on the door repeatedly for my first one, but now when this new doc, she did an internal scan and said right away that just from that she could things weren't right. She said my ovaries and uterus were 'fixed' with no mobility, indicating that things aren't right, so she said that we'd be doing one asap. It's frightening that attitudes can vary so much amongst the profession : \ xx

  • Most women in our local support group had years of battling health professionals, often only relieved by finding a good endo specialist.

    The worst of many awful experiences for me was doc suspect ectopic pregnancy due to severe pain and excessive bleeding. Once we'd established it wasn't I asked what we were doing next, thinking an urgent gynae referral which dr said was unnecessary and what did I expect her to do. Take paracetamol, buy thicker pads.

  • Oh goodness I know, as I said in my reply to the lady above, I'm sick of just having painkillers thrown at me as solution. This is the worst thing that doctors do, talk about 'pain management', which basically means no cost or hassle for them. You just have to dose yourself up with paracetamol or something stronger, and meanwhile, nothing is resolved. The frustration and anger that comes with this is, I feel, incredibly dangerous, and it's no wonder so many women like us end up battling depression as well. xx

  • Hi. I am so sick of this, don't get me wrong there are some really good doctors out there that try their very best but it feels like for every one of them there are 10 complete obnoxious ignorant arrogant ones who treat us like we are being over sensitive!!!

    Keep in mind that we pay for the NHS so we pay the doctors wages and therefore we have a right to demand to be treated better and to be taken seriously. Don't let them bully you into letting them wash their hands of you - you wouldn't let a builder leave a job half done on full pay so don't let the doctor away with it either - be strong and demand to be taken seriously and to be dealt with.

    Don't let them pull you down or make you feel like your exaggerating :)

  • This is what frustrates me, after years and years, I've now had to go private to get something done, despite years of paying into the NHS, and pretty much getting nothing in return. I've learnt now to basically be a bitch to these people and not let myself be sent away with a pat on the head and some painkillers. These people don't have to live our lives on a daily basis and cope with the pain and often the humilation that we go through. I once sat in a bank manager's office discussing a mortgage, only to find to my horror when I stood up that I had bleed through my underwear, jeans, and coat and on to his chair. When I told the doctor, it was a shrug I got in response. I cried my eyes out. xx

  • Yes, I've had nearly 18years of this experience. xx

  • I hope you find someone who listens to you soon, none of us should be left to suffer xx

  • Yes to all. My symptoms started at 12, and were completely ignored and discounted until my early 20s. After diagnosis I went into a good phase as I found myself the best specialists etc - now I've moved back to my home town I'm back to square one. I give up at this point.

  • I think there seems to be an odd attitude that young people do not suffer or are not susceptible to bad illnesses, so when we go in at a young age, we're largely ignored or sent away. I find this attitude utterly baffling, that only people over the age of 60 can get ill or suffer serious illness. Youth doesn't necessarily equal vitality! xx

  • Hi Ali in Somerset,

    I am really appalled at how many of the women on this forum have been badly treated on the nhs. Most people treat their pets with far more respect and dignity. For me, there appear to be two issues; one is the lack of knowledge and awareness of endo in the nhs. Second issue is the rudeness and disrespect with which some doctors treat their patients who clearly need help. Ignorance is not a great defence but treating other humans so badly is unforgivable. We are getting into the territory of it being a human rights issue.

    I was fortunate to have insurance with my job when I was diagnosed 7 years ago. I lost that job (because of endo) but I'm so grateful that I maintained my insurance. I was diagnosed in the space of a few days and a lap to confirm within two weeks. Endo has returned again. I did contemplate switching to nhs when my insurance is up for renewal but after reading so many awful stories I've decided to carry on paying even though the premium will go up quite a bit and I can't work because endo makes me unreliable.

    There are many stories on this forum of some women's horrible experiences on the nhs. If you have a good experience and do not require advice or help you are less likely to post on this forum so the full spectrum of experiences is not likely to be represented. Curlyjo's experience is useful to know about. It's not all doom and gloom.

    Best of luck

  • I think you're absolutely right about lack on knowledge, there just isn't the research done, and again it's down to attitude. People feel that "women's problems" aren't worth looking into, and that women have been suffering for thousands of years, and they can damn well go on suffering. Another issue I find (and I'm not being sexist) is that the specialists are largely men...and this is just not helpful. Just because they know the theory behind all this, they have no idea what it's like to live with it, and they also have very little sympathy. They don't feel the need to sort these problems and find a good solution to it all. I am so frustrated and tired by the whole thing, it's a constant battle to be fought. xx

  • I would also add that the problem seems to start with a GP either not referring a patient or referring them to a general gynaecologist and not an endo specialist. From what I have been reading on this forum Gynaecologists do not have the right skills to diagnose or treat endo. It's a case of pot luck. Only a gynaecologist with the correct awareness will know when to refer someone on to an endo specialist. My theory is that gynaecologists get rude and dismissive when faced with endo and that makes them feel out of their depth. You are in the 'difficult box' and they just want you out of their surgery.

    My other theory is that nhs prefer to throw hormone drugs and painkillers at women rather than spend money diagnosing by lap and treating surgically. That would be more expensive! This is why many poor women have to behave very aggressively to get the treatment they deserve.

    I hope the specialist you are seeing privately is an endo specialist.

  • it's so horrible to hear about the terrible experiences you all have had. My experience is quite different not sure if this is because I'm under the NHS in Scotland. I had a ruptured cyst when I was 13 so I was under the care of my gynaecologist from an early age. Even though this cyst was completely unrelated to endometriosis I was aware of the condition because two of my aunties suffer from it. When I suggested to my gynaecologist that I may have it he told me they don't usually diagnose until between 20-25 I was quite persistent though and after having an internal scan my gynaecologist told me I did not have it- I knew however it can only be diagnosed through a lap which he then agreed to do. I think they really play up on your knowledge of endometriosis as well. After this he took me seriously- well he had to when he diagnosed me after telling me I didn't have it! My problem however is the numerous gp's that I have dealt with have told me a few times that it is bowel pain that I experience and that I have ibs also- which i'm pretty certain I don't as my bowels are fine. Even after having the diagnosis they still don't take it seriously. I was not long ago reffered back to the gynaecologist but I didn't ask my doctor I told her I needed to be as they had suggested if the pain got worse I should be. I think if I just went in with the symptoms she would have just fobbed me off. After one appointment at the clinic I was booked in for a lap 2 weeks later, I'm also lucky because my gynaecologist specialises in infertility and causes such as endometriosis. Listening to your stories just makes me so grateful that I seem to have escaped the worst of the nhs... hope it changes for you all and you get the care you are entitled to xxx

  • Definitely, if you go in with not much knowledge then they really do just fob you off, whereas if you go in knowing what you want to say and what you want to happen, they get quite flustered and realise you won't be sent away so easily. I really do feel that they don't want to spend time and money on these problems, which really really angers me when I see all the money that goes into helping the obese. Sorry, but when did knowingly eating too much become a disability? I have personally seen first hand how much help, support and finance these people receive, and yet we are treated like nuisances and told to go away. It angers me to the point of tears! xx

  • Gosh, I nodded so hard whilst reading this I nearly nodded my damn head off, it's like reading something from my own diary! When I was first diagnosed with endo, a thoroughly unpleasant consultant told me that I should just go away and have a baby, because that would sort me out....I couldn't believe what I was hearing. I was in no position just go away and have a baby, and do they really think that such a life-altering MASSIVE thing to do is a genuine treatment for this problem? I was floored and told him that his attitude was appalling. I refused to return for my next appointment with him and demanded to see someone else. But these are the attitudes us endo girls are faced with. It stinks.

    Like you, I also have IBS and various other stomach issues, and when I expressed concern that every time I went to the loo there was blood, and maybe this might be related to the endometriosis, I was told to go away, stop making a fuss and take some senna......wonderful.

    It's got to the point now where I'm constantly angry, frustrated and tearful and I feel like I need some genuine recognition from the medical community that this is a very real, very painful condition that needs proper attention. Until then, I think us endo ladies will be suffering for a long time. xx

  • Nodding your head, that is so funny hahaha. Have you seen Carol Pearson's YouTube Ted talk about endo? I recommended and actually made a few of my family members watch it. I have a good mind to email a link to it to all GP surgeries and gynaecologists but of course we can't communicate with them that way. Do have a loom though, it certainly made me feel a little better about my own situation and helped a few members of my family realise that this is not just me being negative and moans (cos I know that's what they thought). I truly believe people still don't understand the disease and think its just bad period pain and so they don't want to even learn about the disease. I just find it all incredibly frustrating, I go through phases of not caring and feeling like I can fight it, though to feeling angry and upset that no one seems interested.

    I've just suffered a really bad period but mainly because I kept going to the loo, wee and diarrhea - which left me extremely dehydrated which has taken me days to recover from. My mouth has been so dry that it's either from the frequent toilet trips or my hormones. It'd prefer it be from the former.

    I cannot believe your doctor told you to get pregnant, what a complete plonker.

    Lucky my gynea in oxfordshire does seem to understand a lot more than my first gynea did.

    Curlyjo I suspect we are under the care of the same guys, as mine are also fertility specialists which does help them understand how devastating an impact endo has to our bodies.

    It's my GPs who have been disappointing. I know they can't specialise in everything but some comments i have had from them are utterly bizarre and shocking at the same time.

    Post op my other female GP told me I should have a hysterectomy, she clearly had not even glimpsed at my records otherwise shed know i have been battling infertility as well as this disease.. Recommending that to a 38 year old who has not had children is just darned ignorant and crass. And, she is my 'named' GP and I have absolutely no relationship with her at all.

    Luckily a part time female GP is nicer but I am always so hesitant to book appointments. I just can't bare the ignorance.

  • Ooh no I haven't seen it but I'll certainly have a look later on this evening.

    What frustrates me is that they also don't seem to do much 'joined-up thinking', they don't look at your symptoms as a whole and try to find proper solutions. They just say "oh yes, IBS and endometriosis can be connected"...but they don't offer anything further and they just leave us be with all these problems.

    I'm so sorry to hear you've had fertility issues. If it's of any comfort to you, my mum was 38 when she had me and had had the same problems as us, and was told it might never happen, but it did, although I was the only baby that managed to survive. I hope that it happens for you, I'll be keeping my fingers crossed for you. I've been told that it's very unlikely I'll have children, but luckily for me, it was never in my plans, and I had already made the decision not to have any. xx

  • Unfortunately I had the same experience, patronising doctors telling me nothing was wrong and I should lear to deal with pain. I was still in Italy than, so it's not a problem common only to NHS. I think many doctors, and specialists as well, are unaware of endo symptoms and the correct way to diagnose it and treat it. A campaign to raise awareness both in professionals and the public is badly needed.

  • Read all your stories, ladies, its good (but also bad) to know I'm not alone in my experiences, havung been made to feel, since my teens, as if my always painful, sometimes excrutiaing periods were somehow my fault for having a low pain threshold or something. I've had quite a lot of GPs as I moved house several times - a couple of times I'd get one who seemed to listen, but then I'd have to switch Practices again and be told there was no further help on offer. They go on about the 'postcode lottery' in the media and sadly there is some truth to it. My latest GP sent me for a scan 3 years ago as I had started to get pains outside my periods - they almost missed my ovarian cysts as the sonographer was looking for kidney stones! I then had 2 horrendous internal scans, a few months apart, to be told the cysts were 'resolving'. A year later, I still had the pains, went to my GP again who told me the cysts would be gone by now and implied I must be making it up. Only after I insisted, did she agree to refer me to gynae. I was put Prostap, which helped me for almost a year before the pain came back. My Gynae had left and the new one suggested Mirena or more injections, or a lap (almost as the last resort). I asked for the lap, as I wanted a firm diagnosis and guess what? I had 'lots of endo', fused ovaries, adhesions etc. So they removed what they could and I go back to the Gynae in March to see what happens next! (Sorry, I ended up ranting too - funny how it gets to you, isnt it?).

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