Bit of a random question but I am intrigued so thought I'd ask.
We all know there seems to be an issue with understanding of endometriosis within the medical profession, sometimes the responses are uneducated, or they're down right derogatory/dismissive.
Can I ask:
- Do you challenge uneducated/dismissive/derogatory comments from doctors?
- If so, does it make a difference whether they're a GP or part of the gynaecologist's team?
- if you don't challenge doctors, what stops you from doing so?
Would be interesting to know what stage you're at e.g diagnosed or not, if diagnosed, for how long?
Best wishes
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TennisAM
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I’m a super polite lady but,this disease has been utterly relentless as it has for so many...
It took me 32years to gain a diagnosis and since 2017 I’ve had 3 surgeries and about to have another.
I absolutely challenge both GP’s,nurses consultants you name it!Always with that charm but,always armed with facts to support my thoughts!
I find it particularly distressing when a GP questions why I’d be suffering with the disease when I have no ovaries!!It’s my personal gripe forgive me...it’s happened twice in the last month!
Fortunately I have a cracking consultant now but, he took some finding...
I am not afraid anymore this is my body and it’s been through hell...in a way challenging what I am told gives me strength when I feel so out of control!
I have offered to support my GP practice with any information they need with regards the disease and also how it affects us....I feel there is so much education required and hopefully change is coming..
My heart goes out to all of us for how much we have to suffer...
Never be afraid to seek a second,third or even fourth opinion until it feels right...it may just be worth it...
Thanks for allowing me to rant!
Best wishes and if you need any support just say the word
Wow, 32 years. I can't imagine what that was like.
But on a positive note I'm so glad to hear your gynaecologist is a gem. Hope the next op goes well.
Can't blame you for being annoyed about that. Endo can create its own eastrogen afterall. My pet hate is being told my bowel issues are nothing to do with endo (even though I have bowel endo that's gone all the way through), it's IBS, of course!!
I'm the same as you, happy to challenge any doctors- GP to consultant level. Mostly also with charm (and knowledge). Ultimately knowledge is power! But if I need to wipe the floor with them I do!
I also meant to say thank you for the offer for support. Always happy to reciprocate. I have done a lot of research of natural things that help, if you're interested, feel free to send me a private message x
Hi. That’s a really good question 😊. My nature is to trust the medical profession but after they missed internal bleeding ( did result in my endometriosis being found 👍) I am much more wary, I do research and go into any appointment as well educated as I possibly can about the issue whether it’s endo related or not. My gp isn’t great and refused to follow the pain plan from my endometriosis specialist as she thought she knew better, I ended up passing out in pain and having a week in hospital, at which point the specialist told me to go through them for medication as unfortunately a lot of gps just don’t get it.. I started having problems at 15 and it took to 33 to get diagnosed and that was by accident also involving a doctor who said I was a time waster but that’s a whole different story🙃. What I have definitely taken from it is our daughters won’t be suffering like I did and I will fight for them to get proper diagnosis if they show any symptoms like I did. Mine is currently under control but with endometriosis you never really know what it’s doing. Are you questioning your care at the moment? Xx
Thanks for sharing your story and your approach sounds spot on. I really can never understand why GPs think they know better. As far as I can tell GPs are the main reason women are undiagnosed for an average of 8 years.
I have severe endometriosis and felt I wasn't being taken seriously by my GP surgery or consultant. So I sought a second opinion at another hospital (which turned out to be fruitful as the MRI showed deep and large amounts of endometriosis, which wasn't seen on the MRI at my first hospital). I ended up choosing to change my Gynaecologist (within the same bsge centre) and have replaced my colorectal surgeon too. I'm much better off as a result.
I find with my GPs that I have to challenge regularly but I hope I don't need to do this with the new team at the hospital. Knowledge is power, so I adopt the same approach as you, I'm always prepared before a medical appt.
My periods started when I was 10, despite being told everything was normal my GP put me on the pill at 12 to "settle" things down. It didn't help.
At 22, after a decade of being ignored by GPs, I was diagnosed with stage 4 endo. I'm 36 now I've had 7 surgeries my last one was 2015 and number 8 is in the pipeline.
In answer to your question. I always challenge GP's. I was told student doctors get roughly 10 hours training in gynaecological conditions 😱 vs my 14 years of living with the diagnosis I'm the expert as far as I'm concerned not them but like most of us I've had to become the expert through necessity.
I've had some great consultants but also some not so great ones that leave you with absolutely no confidence in the system.
It can be very difficult to challenge the medical profession but you are well within your right to do so and I think any good doctor/consultant will say that you learn more from your patients than text books.
I would have never considered challenging the medical profession when I was first diagnosed but I've lost so much and it leaves me so debilitated I just won't be ignored anymore. I will make myself heard and hope it makes a difference in the future.
Sorry its been such a challenge but you are right we have become experts and that is a great thing. Being able to spot rubbish advice from a mile off is a great skill.
I'm the same, I make sure I'm heard too. A lot of doctors aren't used to being challenged and really don't seem to like it 🙄
If you need a laugh, this is my most favourite time when I challenged a doctor: a female gynaecologist was very nonchalant /didn't care about the side effects of me taking a nasty medication for endo (think it was the menopause medication zoladex). I must have been about 25 at the time. I said: "I think you should take it. I'll review you in 3 months time. I'll see how well you've survived the experience, then I'll make a judgement based on that". It was the beautiful pre covid days so I got to see her mask-less face drop. Beautiful 😁x
Yes. You definitely are the expert where your own illnesses are concerned. GPs are GENERAL practitioners and they can't know about everything. It was actually a consultant who told a group of us with blood cancers that WE HAD TO EDUCATE OUR GP'S because we are the experts and doctors don't know anything unless we tell them. With a disease that is not well known, they actually have to rely on lots of patients telling them what is going on in their bodies so that they can become knowledgeable.
Any doctor who thinks they know everything knows nothing. I remember being given an internal examination in hospital by a young male doctor while I was threatening to miscarry, and firstly, I knew I was pregnant and didn't need this invasion, secondly he could make things worse and thirdly, he could hurt me, and he did. When I said it hurts, he said "No it doesn't" Ha b****y ha!"
That's awful. The GPs don't seem to know anything at all. That's never acceptable especially as endometriosis affects 1 in 10 women. They understand far less common problems, women's health doesn't seem to be taken seriously. Because it's hard, there is no easy test to hand the diagnosis to them on a plate, they prattle on about it being "so hard". As a generalist (solicitor) I pick up new technical information all the time. With effort it's possible. They're just not trying.
Also my GPs aren't interested in listening to me, which makes them the worst kind of doctor!
I heard a young doctor on TV the other day saying that she wanted to be a GP and didn't intend to spend more than a year or two out in the field. How can they get general knowledge with less than five years working in hospitals?
Thing is all professionals have continuing Professional Development requirements. It seems that most GPs are pretending when they tick the box (to renew their licence) that says they've continued to develop.
They should also learn on the job. Its not all picked up from courses.
This is a great post. I had Endo identified in 1998 during lap pelvic investigation and they removed it as far as I can remember . Years of awful heavy periods and couldn’t and can’t take progesterone. Now 52 and had hysterectomy last year. Over last 3 years have had gall bladder ( and 5cm stone) removed and failed endometrial ablation. Now have a lot of pain post hysterectomy and medics are telling me they can’t do further surgery to check / remove Endo as it would make more lesions? Anyone else being advised this as it seems the lucky ladies who are listened to by consultants have had several surgeries for excision? Anyone recommend a good gynae knowledgeable in Endo in the east please? Thank you all xx
Hi, sorry to hear that, I guess they mean adhesions? Doesn't sound like you've had too many ops. I know someone who is about to have an 8th op - BluStarFern - did you have any thoughts on this?
Whereabouts are you in the East? Have you posted asking for recommendations (they can't post publicly because of endometriosis UK rules so ask for private messages)
If you would like info on natural things that work, let me know I can send it to you via private message. I have severe endo and it all reduces my symptoms x
Hey yes, sadly surgery is a double edge sword, in removing adhesions(scarring) you create more. After my 2nd lap I was told you've had 2 ops what more do you want? Come back when your 35 for a hysterectomy!! so I found a new consultant. Its quality of life versus risk of surgery.My understanding is not even a hysterectomy can guarantee endo won't come back, they would only need to leave a microscopic amount of endometrial tissue behind to cause a recurrence. Think of endo implants like ice bergs..only 10% is visible on the surface and to an untrained eye implants can be easily missed.
If your symptoms are impacting your quality of life, you can request an MRI ,which is better than surgical investigation, to make sure there isnt any endo left lurking or another underlying condition. It could be caused by scarring from your hysterectomy in which case I could recommend a supplement I've been taking and its helped with my adhesion pain?
I hope I haven't said anything to upset you, please don't loose hope, if its endo helps available, its its adhesion pain helps available.
Serrapeptase. I've had it through 3 cycles now and the big thick band of gunk through my right hip is finally easing..i dont like to recommend anything unless I'm sure it's made a difference for me and I did full body yoga for an hour whilst on my period.. TMI I'm sorry.. but between your essential oils recipe and serrapeptase I can move for once 🤗 much love x
Hello, just jumping in here, I’m currently sat in A&E yet again due to endo, I’m just wondering how long you took the Serrapeptase for before noticing a benefit and also did you get any side effects? Are there some essential oils recommended? Tia
I also waited around 32 years for a diagnosis. What I went through off and on over those years being patronised, hurt physically and emotionally etc was hell. I had a hysterectomy and oophorectomy 17 years ago and continue to suffer with severe Endometriosis. They say things along the lines that I 'can't be having any trouble with that now'.
I'm lucky enough to have the best GP and consultant I could wish for but yes took some finding like the other lady who waited all those years for diagnosis!
I've even got the help of my M.P. who has written to a number of universities on my behalf, pleading with them to improve the basic training of doctors on the subject so that things improve for future generations.
Yes some doctors really are ignorant. Sorry it was such a struggled. I understand the pain of derogatory comments so you're not alone. I'm impressed you've got your MP contacting medical schools. Glad to see there are some decent ones out there x
She was brilliant! She wrote to quite a few. Some of the universities responded really positively which was encouraging and said they would alter their training. Getting basic understanding at the start must help I'm sure and hopefully things will improve for futures generations. XX
That's great and i agree it will help. My issue is that a lot of doctors don't take the condition or symptoms seriously. That mindset is far harder to stamp out xx
Wow! I have ready your messages and everyone’s comments and we all have the same experience with the GP ... we all have been told at some point that the pain is normal or we need psychiatric assistance ( that was my case) the fact is that we are in our rights to ask for the right treatment, information and support. I am also a very polite person but I have lost it all after been mistreated and humiliated by the medical professionals. I think many of us endosuffers know more about this subject than the actual gp’s and it’s all down to the fact that we spend a huge amount of time researching as to why we are feeling the way we do. For 10 years I was in and out of A&E no one was able to diagnose me until I told my gp to refer me to a gynaecologist because I think I have endometriosis, unfortunately we need a specialist in endometriosis not just a general gynaecologist to treat endometriosis better.
You're absolutely right, most diagnose themselves after years of suffering. I have also been told to get mental health advice rather than being given a painkiller. I hope your symptoms are under control now?
Well... after 6 laparoscopic procedures and long waiting lists to see the specialist I decided to get treated in Germany, and it has been the best decision I have ever made in regards to my health.... I am not saying they symptoms have improved or miraculously been cured, but at least I have an amazing specialist whom he has sympathised with my illness and pretty much supports me (I think we all endo suffers need that) I have my gynaecologist one phone call away and she will see me straight away and the best of all is that I get checked every month and the gynaecologist practice has ultrasound machines which is a plus!! I have an ultrasound every time I get to see her! No more waiting lists just for a simple ultrasound! I believe the medical system in UK 🇬🇧 needs to change urgently!! Specially they way women with endometriosis are treated.
Wow yes it does need to change. The other thing is patients need to be proactive. I was told an ultrasound would take 2 months. I got a cancellationby calling them within 5 days of referral. Do you mind sending me a private message with the details of your gynae in Germany please? thank you
Its hard one, as I have had years getting to where I am but I got here through research and by accident...I had moved from where I grew up 5 years ago and moved to london and very lucky to have alotnof resources here in London and access to specialists...through accident mind I went and paid £300 private consult 3 years ago and was the best £300 I have spent he brought me onto his NHS list and I'm now having my second big surgery in a few weeks.
But also I have recently learnt and understand more so now that actually doctors, consultants, specialists, nurses etc are all trained in different professions of care and medicine...so some health professionals dont have the knowledge the specialists understand and know within in these conditions. It's hard but give them the benefit of the doubt and people can always ask there GP to be referred to bsge team to undergo further investigation and help.
I think there's many issues at play. There's an average of an 8 year delay in diagnosis of endometriosis so that is a huge failure at primary care level with GPs. Endometriosis is common as 1 in 10 women have it so it shouldn't be ignored in the way it is.
I've been told by GPs excruciating pain and heavy bleeding is normal, to just take paracetamol and go away. Told its all in my head. Told there's no cure for endo so no need to treat it. Regularly misdiagnosed by GPs despite me experiencing classic endometriosis symptoms. I had to bully my GP to refer my to Gynaecology. None of these doctors deserve the benefit of the doubt. These and worse derogatory comments are common place (not only to me but many other women with the condition) from both GPs and some Gynaecologists too.
We are lucky here in London with a lot of choice. Most women outside of London do not have a BGSE centre nearby as there are very few across the country. BSGE centres are for the severe cases only, therefore, most women are seen by general gynaecologists, if they are referred by their GP. Not all general gynaecologist understand endometriosis well, during laproscopy these general gynaecologist's seem to only check the uterus and ovaries. I know someone with endo who had 4 operations via general gynae where nothing was seen. This is because they hadn't looked beyond the gynaecological organs, only when she insisted on a referral to a bsge centre, severe endometriosis was seen on her bowel etc during a 5th surgery. This is a shameful state of affairs.
Although there are some great doctors, you just have to read the many stories on here and Endometriosis UKs page to know that a lot of GPs and some Gynaecologists are failing their patients. The only way to succeed with these doctors is to stand up for ourselves, insist on tests and referrals, and remember we are not imagining these debilitating symptoms.
Not all women will know they have endometriosis when they go to a doctor with Gynaecological issues, therefore, its so important that the GPs actually understand this common issue.
I asked the question to gauge if people are standing up for themselves and driving their own care like I do.
Of course many women don’t even have a clue or heard about endometriosis! It’s all up to us to raise our voices in unity, it’s the only way to go forward. Xxx
I always challenge doctors in any capacity when it comes to my endometriosis and I try to empower any women I read about struggling in this forum to challenge their GPs, gynaes and "endometriosis specialists".
I've had GPs respond with the following uneducated statements:
- Painful and heavy periods are normal.
- As long as your periods arrive on-time within the normal range, you don't need to worry.
- Bowel symptoms? It's probably IBS.
- You have bowel symptoms? That's not endometriosis, endometriosis only occurs within the womb and ovaries.
I've had gynaecologists give shocking responses:
- It sounds like you're experiencing sympathy pains, from the way you describe your sister's symptoms. Are you sure you haven't mentally taken on her pain as your own?
- You experience night sweats... How about trying a progesterone-only pill?
- Regardless of your bowel symptoms and that fact that endometriosis was found on your rectum, rectal bleeding in between periods is not endo-related.
I've visited not one, but three endometriosis specialist clinics in London:
- One advised I continue taking hormone pills as treatment, despite my symptoms worsening.
- Another tried to force the Mirena coil on me, which I later read saves the NHS money because it's a "one-off" treatment as opposed to the regular supply of hormone contraceptive pills.
NHS practitioners will gaslight you, make you feel like it's in your own head and try to fob you off with the most cost effective treatment - and those are the ones who have some idea of how endometriosis works.
Women need to remember their suffering is real and believe that they know their body better than anyone else, especially an incompetent doctor.
I honestly urge all women to do their own research, challenge any advice they don't whole-heartedly believe in and push back on any treatment they're not comfortable with.
Unfortunately, we have to fight for the right to basic healthcare with it comes to endometriosis. Or most gynae issues for that matter
Awful. I'm the same, I fight for my care and try to empower others.
I've had a lot of the same said to me, my bowel endo symptoms are always IBS. Thankfully my specialist at my bsge centre took me seriously and it was treated. But it seems to be back with a vengeance according to a recent mri. Not sure why doctors are so naive, a consultant Gastroenterologist said my bowel issues are nothing to do with endometriosis after Radiology saw no endo in an MRI last year. Ummm... maybe its not always reliable because the radiologist is trash?! (Sorry my local hospital's radiology department makes my blood boil)
A radiologist at another hospital saw 11mm of endo in my bowel. Shows the importance of a second opinion.
I should also say I had a few dismissive comments from a doctor (normally a bsge specialist in a London nhs hospital) while seeing him privately. Because they do nhs and private work it's all the same idiots, just seeing them when they're tired in the evening 😂
Let it rip! It's really unfair and it almost always feels like a lose-lose situation. If they acknowledge it's endometriosis, they're at a loss when it comes to treatment and managing symptoms. If they outright dismiss it being endometriosis (regardless of how well they can read a scan) they rarely investigate further and you're left at a dead-end. What's a girl to do but rant and rave?!
And 100% regarding second opinions. At all stages! When you're being diagnosed (or not diagnosed as was the case with you and the first radiologist) and also when treatment is advised. You'll be susprised at how the medical advice differs. And in the end, you'll just have to go with your gut as to who you trust.
I manage my symptoms by not bleeding. I've tried about 7 combined contraceptive pills and finally landed on one with minimal and bearable side effects (for me it was Marvelon). I take it continuously and only stop if I have a break-through bleed. I take a 7 day break and then continue. I've also changed my diet: Less sugar, dairy, wheat, eggs, red meat. And finally, I take supplements: Vitamin C, Vitamin B complex, Vitamin D and Magnesium. Such changes have really helped with my symptoms. I highly recommend trying the above and hope it helps xx
You're right. Very little is done. Do you mind me asking if your bowel endo had been treated?
I also take the pill back to back but always seem to bleed every 3 months. Can't stretch longer than that. It doesn't help with symptoms but happy to not have monthly periods.
I do all of what you do too. I found other natural things that help, happy to share my research if you send me a private message. There are links to other websites so can't post here as endo uk have strict rules!!
My honest answer is I don't know. I had a laparoscopy back in 2016 - only because an endometrial cyst reached 5cm. When I woke up the surgeon advised that I have endometriosis on my bowels, bladder and rectum and that they were able to "remove some of it". I never received a definitive follow-up report post-surgery to understand exactly where I have it, which stage I'm at, and what they were able to remove and from where.
The cyst (since gone) was on my left ovary, which I've been told is currently stuck to my bowel. I experience pain there, only now and then. Before I'd be in agony every bleed.
Now I have ultrasound scans every 6 months to keep an eye on things.
Yes, please to you sending me your research I'm happy for you to private message me.
Yep, just a general gynae surgeon. They advised that they wouldn't be able to touch my bowels much and would need a bowel specialist for that. Why a bowel specialist isn't involved from the get-go I'll never know. The majority of endo cases involve the bowels, it's not rocket science to know that you'd need one present at the surgery.As with all things NHS it all comes down to budget! x
That's terrible. There's a big difference in my opinion between the service at general gynae and the bsge specialists. I had a fixed sigmoid colon and my bsge endo Gynaecologist dealt with it himself, and did a good job. This time my consultant (new one) has involved a bowel surgeon in advance.
General gynae are poor, they seem to be happy to let people have multiple ops whereas the bsge specialists try to keep operations down to a minimum by doing as much as they can within one op.
I think if there's signs of bowel endo (whether through scans or symptoms then they should always be there). If there's no signs of bowel endo then of course no need.
It is an extremely underfunded service, recent govts have closed a lot of hospitals and cut funding again and again. There's a lot of blame at Westminster's door. x
Absolutely challenge doctors! A few years ago I wouldn't have dared, but after being tossed to and fro and fobbed of and lied to so many times I take no prisoners 🤣🤣 always be polite, but firm. GPs won't know they're doing anything wrong to patients if we don't tell them!!
I even stick my nose in where its not even about me now, e.g. a doctor mentioned offhand that PCOS was super normal, not really a problem and apparently if you went to the Mediterranean "half the women there have it" (🤔🤔🤔). I don't have it myself but have a friend who does and its certainly not 'normal' so I shut that down and told him about all the ways it can affect someone. He was a bit taken aback to get a lecture but took it on the chin!
It's why I normally take my mum with me to appointments now (or have the phone on speaker with her in the room). Had an awful GP appointment a while back with the standard 'its all in your head/nothing wrong with you/you must just be mentally ill' gaslighting and he was so rude I broke down in tears, luckily my mum was there and did the work for me! He stuck to his guns so we complained to the practise, they told him off and booked me in for a double appointment with the Head GP who actually took me seriously and we made some progress!! So its always worth challenging!
I would say my doctors are very educated and I speak with the same one doctor all the time!
Then I bang my head with the hospital. Id say 90% of the gyni team are uneducated or simply just don't care. Ive argued with all but 1 consultant and believe me I've seen them all
Ive spent a lot if hospital trips so much so they all know me by name 🙃 and probably around 6 years to get diagnosed (which is quick in Wales) but I rang everyday to chase appointments and my doctors helped a lot and awaiting my hysterectomy wow don't get me started! Again doctors amazing consultants thought they could fob me off yet ive seen consultants from othef departments absolutely amazing like urology for example had a better understanding
I think aswell if they kept in touch a bit more the anxiety wouldn't build do much. Ive had so mamy appointments promised dates and then been cancelled (before covid) and not a single phone call to say try this while you wait or has the pain got better or worse just nothing and expected to wait years inbetween suffering
Hy I'm just in the middle of trying to convince 2 g.ps that I feel I have endo on my bowels having had a full hysterectomy but they keep telling me, no ovaries therefore no endo is possible!! Just been referred to a colorectal surgeon so I will have to convince him/her yet again so the answer is just keep at the g.p for referrals and know your not on your own with this amazing endometriosis UK it has well and truly helped give me the confidence to stand up to the doctors who just keep giving me meds (16 tablets a day)and thinking I'm pestGood luck 🙀
Sadly a lot of doctors are ignorant. There's studies that show endometriosis can create its own eastrogen that's why pain continues after menopause/hysterectomy.
Glad you continue to fight. If you're in London or anywhere near Harrow I have a great colorectal surgeon I can recommend x
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