If you could improve ONE thing from your ... - Endometriosis UK
If you could improve ONE thing from your most recent interaction with a gynaecologist/consultant what would it be?
JaneHJ_CEO1239 VotersPlease select one:
I'm dreading my next appt with my consultant in May! I had the GnRH injection fir the first time in nov 13 . Was a 3month injection and all my usual symptoms started returning on 24th Jan. Had no info re contraception after the 3minth period . All dr said is that they want me to go back two months after it's worn off and not to use any contraception such as pill, injection, implant, Uti in mean time. My consultant was awful, was loudly discussing personal info just outside of the airing room and shouting down corridor, had the wrong notes so started to say I had an ovary removed to which i almost had an anxiety attack, he gad someone else's notes and once he located my notes couldn't find notes from prev op and didn't have time to answer any of my q's or listen to me! I complained once he palmed me off to his assistant to whom I complained to but was told he was renowned for being like that with everyone?! I've seen him few times in past and he hasn't been like that before. All my lower bk pain, pelvic pSin, legs (which then hurt my shins and ankles), hips, headaches, feeling nauseous and hormones and moods all over place, sweating lower tummy aches and pains etc etc have all come bk! I still haven't had a period, is this usual??? Sorry for going on and on!!! Xx
I had to vote "other" - and here is my explanation. It would be IMPOSSIBLE to pick ONE option from those listed, as I would prefer if ALL of them were improved. Each and every one of the options is important - Gynaecologists/Consultants should be doing ALL of them.
Great answer. I found it really difficult to choose. You're right. They should be covering all these aspects.
Same. My gynaecologist couldn't wait to discharge me before actually trying any treatment. He just said 'yeah you have endometriosis, go on the coil, depo provera or pill' and discharged me. I went on depo provera and a year later, a doctor asked me why I was on it long term as it causes osteoporosis (and I had a broken hand at the time). That was three years ago and I am still struggling to cope every month x
I agree. I already voted. Wants me to do that again. Everything is important. When comes to having a Dr. That knows how to treat Endometriosis. And the more knowledge, respect, concern. And listening skills. Along with having all the facts. Is very important. Not every Dr. is accurate/correct, as others. Even if they're suppose to be. They may not have been given all the skills needed. When you find someone else who has more awareness, and all the facts. It helps more.
I voted "other" as well. You took the words rite out of my mouth; )
Completely agree with you here!
This is why I opted for more time to discuss things - as I feel that would cover me asking all the questions I want answered, further options available and so on.... But yes I agree in what you are saying 💛
I agree they all need to be improved.
I had to vote 'other' as I have a brilliant gynae who has always given me the time and info I have asked for.
I voted for better listening skills - should have been better communication skills really. I just had a total hysterectomy and ureteric stents for endometriosis. I didn't even know I had the stents, let alone that they need to be removed at 6 weeks. The complete failure to explain this, and that I found out by accident on discharge from the ward, is not good. 3 weeks later my GP has just received a letter stating I need an urgent blood test. Luckily I do not leave my care in the hands of the hospital in Brighton, but organise these things the best I can myself.
When I have a bad Dr. That's treated me recently. I find a different Dr. That can help me. I don't play games with my health. And let someone not help me. I know from experience. How important it is to have the right Dr., too. Can sometimes take to long. And leaves more problems for people with serious problems.
I think it would have been helpful to discuss thing long term we all know endo returns after treatment and in many cases it spreads as mine has my consultant told me he didn't want to operate as the risk was too high but there was no long term plan discussed.
Yes. I believe that, too. It can come back. And not all Docs are willing to admit this. And they aren't all experienced as others are in so knowing that. And when the problem doesn't get taken care of properly. Can lead to worse problems.
I voted for "better listening skills and respect for my views"
All of the options are essential but too often lacking!
More gentle during the examination.
I voted for "other" - because my current gynae is great on all those points. I just wanted to respond to show that gynaes ticking all boxes are out there, the tricky bit is finding them! I would like even more transparency and awareness raised by BSGE on actual endo specialists.
I feel the same as Tinkerjack 1912
A cure.......
I really really wish they would take this condition more seriously, just because its not going to kill me does not mean it does not alter my life to a point where I had to learn to re adjust, if you speak to any patient regardless of the condition they suffer from the one thing that is paramount to all is to control pain.
I find the absolute lack of concern from the medical profession absolutely disguisting, any lady who suffers from this condition should be seen by a consultant on a regular basis instead of only when things get unbearable, maybe if we all had regular check ups preferably with the same consultant our condition would not have deteriorated as much as it has for some of us.
Yes that's true.
I clicked other: in my experience all of these options need to be improved.
Agreed
I voted for other as even though I have a fantastically knowledgable consultant who does give me the time to research my treatment options, I feel like I'm made to feel like a bit of a trouble starter for not just bowing down and listening to what she says..
Better pharmacy support. My consultant treats me really well and wanted to "tweak" my therapy. The gynae dept is in the women's services wing of our local, massive, hospital. They have a small pharmacy in the gynae wing but it closes at lunchtime. Because I was at the end of the morning clinic it was already shut when I came out so I needed to go over to the main dept - quite a long walk, really busy and not familiar with the treatment. All together very time consuming and quite demoralising to assert myself and my consultant's instructions! If I hadn't been feeling well I might have crumpled in the circumstances and possibly not filled my prescription.
I had to pick 'othet' as I have found an amazing consultant and could not improve anything in my experience with him. Its taken only taken 21 years to get this far!
I had to make a complaint about my interaction with my consultant - one hour before my first lap - where I was nearly reduced to tears by being made to feel I was a fake and being prodded in my abdomen to see if I was 'making up my pain levels'. I have no idea what her agenda was, but she said that if they did find anything it probably wouldn't work. Suffice to say they did find something .. a LOT .. and no, it didn't work. Oh well at least she got one thing right!
Different pain relief options when I'm allergic to codeine and tramadol
It has taken me 8 years to get a laparoscopy to get a diagnosis! I only got this because I paid to see a consultant privately. My partner and I were wanting a baby but as I have been waiting for so long I am now too old! My partner will never be able to have children of his own now. I feel fobbed of for years!
Overall - was very pleased with surgeon and surgery.
The one element that caused me the gravest concern, was he didn't mention GnRH, it was never discussed at all, I was groggy from surgery, a nurse arrived told me the surgeon wanted me to have this thing in my tummy (could have been antibiotic or painkiller for all I knew) and in went Zoladex No.1
Only when I was discharged from hosp, did I see on the form that I was to continue Zoladex 4 months. I still had to do all my own research online, when i managed to get hold of a computer some weeks later, and was quite horrified by my research, and the worst aspect is just how many endo ladies are treated pretty much as I was. This is an epidemic of mal-practice in the medical profession. (some do get warned they are menopause drugs but little more than that.)
Judging by the vast numbers of enquiries on this forum to do with GnRH, the service provided nationwide from gynaecologists in regard to GnRH is woefully inadequate.
So my Number 1 request to all gynaecologists is
Much more care with GnRH please !!!
medical staff administering GnRH (nurses and doctors) must always provide the patient information leaflet to each and every patient in advance of starting treatment and for each subsequent implant or injection. Not everyone has internet access or is adept at online research as i have had to become.
Because the drugs are clinically administered, it is exceptionally rare for any patient to be handed the patient advice leaflet, I'm not even sure that the assorted applicators come with one to be honest. I hope they do, but I've not seen one in real life.
They (the consultants) must always explain that there are significant long term risks, they must always check with the patient's medical history as to whether it is suitable. Patients should be told it s optional, they can stop at any time, and that it will not cure their endo. That they must practice safe sex , and hormone contraceptives are ineffective.
These drugs have caused deaths, and long term side effects which add significant disability to an already existing chronic illness.
In my case i have been left with significant cognitive impairment (short term memory loss), and my experience with zoladex was absolutely dreadful. ishould have been warned, I could have been offered HRT but wasn't.
As they are not a cure for endo and do pose risks to pregnancy, I would plead with every single gynaecologist to provide acurate, comprehensive advice on these drugs prior to commencing treatment. and to never ever administer the drugs without the informed consent of the patient.
Perhaps you could poll the forum members to find out what % were given the patient advice leaflet for GnRH in their hands to read prior to commencing GnRH.
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My second request is much better provision for anaesthetic for all vaginal procedures.
Smears, hysteroscopies, IUD insertion and retrieval etc.
Not only are these procedures extraordinarily painful for many endo ladies, we do have a right to pain relief which is not being given routinely as an option.
And when we do know our right to insist on anaesthetics, the delays in arranging these additional requirements are ridiculous in some local healthcare trusts.
I am supposed to be recalled for smears every 6 months. I must have pain relief and anaesthetic to get through the procedure of a basic smear, but that takes booking to see my GP, discussing it with them, they then have to refer my case to the local hospital, who then have to get back to me with an appointment by which time (given the waiting lists I am fast approaching the time for the next smear) and so it goes on.
Why can't I and other women, automatically be recalled to the hospital directly for my smear or whatever it may be, with anaesthetic ?
There should be a system in place where any lady who knows they require anaesthetic should have that on record so as soon as any vaginal access procedure is required that they automatically get booked for anaesthetic too as a matter of routine. There would be cost savings as it cuts out a GP appointment or two plus the time spent on communications between GP and hospitals.
edited to add:
ooops that's two things - just demonstrating my short term memory loss for all to see. I didn't remember the question highlighted just ONE thing to change till I read the question again. There you go - welcome to my world.
I didn't even know we were entitled to pain relief for the smears etc - I was reduced to tears through 15 minutes of constant prodding and invasion which in the end she just stopped and ended up having to do it whilst i had my lap!!The most invasive and painful examination I have ever had.
I have put better listening skills. I feel this I haven't been heard properly, but this maybe because since I was diagnosed, I have been with a Fertility consultant, and not endo/gyne. Whenever I mentioned the pain and what would be done next about it, it was brushed under the carpet, and basically told the choice was to have a baby, or eliminate the pain, not both.
So after 2 IVF ICSI treatments, one working, but ending in MMC, and one not working, now that I have told my Fertility consultant the me and DH want a break, he has finally referred me to an endo consultant.
The reason I feel I haven't been heard properly though, is even after my 1st lap, waking up to my consultant next to my bed, and telling me briefly what had happened during my surgery, and then walking off, without asking if I had any questions. I didn't at that point, but later, when I had come round properly I did.
Then again during my fertility treatment, straight after my MMC, my consultant started off round 2, even though, I now know my body was't ready for it. At the time, I was excited to start again, but during the whole process, I was comparing it to my first round, and it was completely different. When I questioned this, I was told that he has X amount of years experience, and it will work. It didn't, and I feel now that he rushed me, because I only get 2 rounds funded, and have to pay for anything else. Now they are both out the way, I have to pay.
Sometime I feel that I am best talking to a wall, or banging my head against it at least!!
xx Trish xx
I voted other - I would like someone to be a point of contact for asking questions about any treatment after the appointment. Currently being made to feel like a pain in the backside and passed between various people through endless phone calls just to get some clarity on what and when my treatment will be.
I voted for seeing the same person regularly, as this never happens for me! Seen different person every time. Took over 20 yrs before I was diagnosed. By then, because of the postcode lottery, I was too old for IVF on the NHS. Unable to afford private, so will never have the gift of having a child. Why wasn't I listened too? Why wasn't I seen by 1 person!
To actually operate when you are in pain and not fob you off with treatments that don't work.
I have 2 admit dat i wud hav ticked dem all for d consultant id been attending bt last year(hav been suffering wit endo for 20yrs now)I found a new one who specialises in endo n hes absolutely amazing,explains everytin n sees me every time i go 2 d clinic....der r more like him out der...maybe dey shud do a survey on d best endo consultants in d country so people can access dem more easily 
There are some utterly amazing, and well-thought-out answers on here. I've read through them all. Honestly, how I wish that GYnaecoogists, Endo Specilists and medical professionals in general could look at this Poll and the replies here. They might really learn something!
Clearly (or what certainly comes across, here) women with Endo are articulate, prepared to do their research, eager for knowledge, keen to make informed choices, and want to be able to participate and feel fully involved in the diagnosis and treatment process. We are talking women of ALL ages, races, sexualities (as Endo is pretty indiscriminate in who it "attacks").
What really stands out, is that NO matter how confused, intimidated, fearful or concerned a woman may be regarding the diagnosis and treatment process; many, if not all, fight long and hard to get the care that they so need and deserve.
Here are women who write about being "fobbed off"; about being made to feel like "hypochondriacs". Women who are talked to rudely, insensitively or abruptly by medical professionals (who ought to know better). Women who are refused the treatment of their choice; or who are coerced into accepting treatment they do not want. Women who are not given information on risks, or side-effects of treatment; or are not told of the full range of treatment options. Women who are subjected to mis-diagnosis and delayed diagnosis. Women who are made to feel they must choose between starting a family, or taking medication that will make them pseudo-menopausal just to temporarily stop their symptoms. Women whose diagnostic delays or failed treatment means they miss the chance of ever having children. Women who find spurious diagnoses, or personal comments written in their medical notes. Women who are picked on at work by insensitive colleagues; or are frustrated at home by lack of family understanding. Women who feel uncertain as to how good their Doctor, Consultant, or Surgeon, actually is. Women who know nothing about "accredited centres"; or if they do, are unsure how to find one. Women who do not know how "accredited centres" are rated. Women who are unable due to "postcode lotteries"; or due to lack of information; to access quality care, or valuable treatment.
DOES THIS NOT SAY SOMETHING ABOUT THE STATE OF DIAGNOSIS AND TREATMENT FOR WOMEN WITH ENDO?
IT'S PRETTY APPALLING!
Now that I have read through this Poll again; along with the responses; I would have to say that, frankly, I would pick each and every response. There is much that could be improved. And the fact is that we patients KNOW this, and VOICE it.
WHEN will somebody finally listen to US?
Oh! Just another thing I thought I'd add...
I'd LOVE it if medical professionals WOULD REFRAIN FROM JUMPING TO CONCLUSIONS or ACCUSING YOU OF BEING "MAD"!
Women with Endo are not "mad"; they have genuine, physical symptoms and a genuine physical illness. Just because they have something that cannot be seen, does NOT mean that ALL the symptoms are "in their head" (i.e. "madness").
Rather than telling women that symptoms are "stress", "emotional", "anxiety" or "psychosomatic" (implying that the woman is both a "malingerer" and "crazy") it would be helpful if medical professionals would refrain from saying anything of this nature until such time as ALL diagnostic tests have been thoroughly carried out; the woman has had a lap surgery to confirm diagnosis; and Endo has either been diagnosed, or not.
I have a history of generalised anxiety disorder and depression but I am most certainly not mad although as soon as my gynaecologist read in my notes that I have a history of mental illness he visibly rolled his eyes and sighed with what could only be described as exasperation. Ever since then he has treated me as if I am an annoying little girl who does nothing but waste his time. I have an appointment this week but am dreading it because all he does is make me feel stupid and MAD.
I prepare myself for my appointment and say I'm going to ask this and that, even took a symptom diary with me once, get there and start off explaining why I've been referred etc, the Dr then ends up picking up on one snippet of information and I end up leaving feeling I've not explained myself properly, or even feel like I'm making my symptoms up. I guess I would just like longer to be able to explain my symptoms my way without ending up off on a tangent and then feeling I've wasted my appointment.
yes.... this always happens to me too... i bring a long list of symptoms and they pick out one or two that fit their way of thinking.... my nausea ALWAYS gets ingored.... to be honest that is my biggest symptom... daily nausea and yet it's ignored... I have seen a gastroenterologist regarding the nausea and he has run all manner of tests even he thinks it could be related to the endo! for crying out loud - it's not even his profession and he agrees with me... aarrrggghhh!!!
I HAD to reply "other" as for years I suffered severely from Endo and all I was offered was pain kills a roller coaster ride of various HRT and painful laparoscopies. I do not understand why I was not offered any alternative options, other than to put a plaster on the problem i.e. pain kills and HRT's.
During my long journey of searching for alternative healing, I came across something that actually worked! I'm no longer in pain, no longer have to adjust my calendar around "that time of the month", am amble to think clearly, have fun, basically enjoy life without having to think about what's to come at the end of the month.
So yes I've HAD to say "OTHER", because we should be offered alternatives!
I am in complete agreement with you NoMorePain - I have the same thing at the moment, being fobbed off on painkillrers. As soon as university is done (in 2 weeks!!!) im going to start pushing for much more. I have never been given options for alternative treatment, or referrals. Its just "lets try you on this, and that and this" and at one point i went back to the doctors because i was feeling so physically sick of taking so many pills everyday, i just wanted the amount to be reduced. What did she do? Offer me another one!
Alternative options would be fabulous!
I consider myself fortunate in that my consultant gynae has most of the above and importantly has good listening skills and is willing to consider treatment options I put to him. The drawback is that he is not an endo specialist and sometimes I feel I know more about the condition than he does.
My last appointment with my endo specialist consultant was awful. The way he treated me and spoke to me was condescending, insulting and rude. I just wanted him to listen to me, understand my views, and be supportive. Instead he cut me off, snapped at me and he actually used the word "god" to describe himself. I'm not joking! So yes, I would pick 'Better listening skills & respect for my views" in a heart beat. That can go an awful long way in reassuring a patient that they are being looked after.
I voted better listening skills. I had my first gyni appointment on Monday. I barely got asked any questions, was asked why I had been sent there and why I thought it was a gynecological problem (which i don't know, all i know is that I am in pain), didn't acknowledge that I was in pain during the internal as i couldn't pinpoint where the pain was coming from and she kept bringing up that my symptoms were similar to the pain i had 4 years ago with my appendicitis. I was told that it was unlikely to be a gyni issue, there was no reason or evidence to do a diagnostic lap, and to go on the pill.
She was also quite impatient, tapping her foot and asking if i was decent when getting changed.
When i mentioned that PCOS runs in my family and that my surgery 4 years ago showed cysts on my ovary, she stopped me and said that PCOS doesn't cause pain so it wasn't that. She didn't mention any conditions to rule out and said it was mostly adhesions and that i might just need to live with the pain.
Voted better listening skills. As a young person I have felt so many times that my GPs and consultants are desperate to get me out of their treatment room as quickly as possible!
Greater awareness/understanding of endo by pain consultants, my pain consultant still seems to think I have pelvic inflammatory disease and doesn't understand why I can't "get on with my life when other people with pain manage to". This despite chronic neuropathic pain that means I can hardly walk. Wish I knew where I am supposed to go next as he doesn't believe in pain management programs either, I have a feeling a whole new journey is about to begin!!
I voted "other" - I'd prefer my consultant not to insist everything will be solved when I decide to have kids. Which isn't something I'm planning on doing :/
I've had this exact response too. I'm a 23 year old student who intends to continue my academic career and complete a PhD. I don't want children now! But my delightful male gynaecologist doesn't seem to understand this.
I had this too.... i don't want kids... needless to say I no longer see this gynae!
Getting to the bottom of my pain and not fobbing me off back to my GP
my consultant is great. will listen to anything u say and does checks properly, i first had a lap in dec 2012 and again april this yr. anyone in bolton area i would go to him...
I picked other as I didn't get offered any pain relief as the registrar said the pain relief wouldn't take the pain away. As far as I'm concerned I need pain relief because I have waited until I saw the consultant who I didn't see this afternoon to see if I would get pain relief. The registrar that I saw obviously doesn't suffer from endo otherwise I would have got the pain relief I need. She told me that she write to my doctor advising her that I need a hormone tablet which I think is a progestogen one but I can't remember what it was called. I feel as though I have been abandoned by my consultant.
I have been passed from pillar to post and seen a different doctor every time, they dont document enough and I am repeating myself over and over.
Had to vote other, I have had good consultants and very very bad consultants I find they all need to have more or even some knowledge about the condition as it is in their specific field as a gyne.
They are really rude and just canny wait to get you out of their room , like 'were wasting their time'! And the nurses and exactly miles friendly either xx
To be able to tackle endo
I voted seeing the same person regularly. It's too easy to go back & see someone different & then explain your symptoms again. If you had the same gynaecologist they would know your symptoms your treatment & could refer you.
I voted for more discussion of treatment information/options, I did not absorb what I was being told, and did not ask the questions I know wish I had. And now have so many.
What are the options .. can I do stuff to prevent things getting worse.... hence I am having to find on line forums to discuss, what is a difficult subject for me to discuss fully anywhere.
Its sad but reassuring to see that Better listening skills & respect for my views (which got my vote) is the highest answer.
I voted other as my most recent appointment with a gynaecologist was very dis satisfactory. As I am not currently trying to get pregnant she was not even willing to consider tests, gave me no pain manage ment advice and basically informed me I would just have to cope with the pain and tri cycle my pill until I decided I wanted a baby. Didn't make me feel particularly well cared for!
I am one of the lucky ones who's diagnosis to laparoscope 'only' took 9 months. I just found that the care throughout was minimal and I had to fight and fight to get things sorted. The hospital where the laparoscope took place was stretched for staff and I was left sitting alone, scared out of my mind, for hours. As I came round the consultatant came to speak to me....I cannot remember what he said and the nurse was none the wiser. I phoned the next week to see if the secretary could shed some light and she told me a letter would come in the post. Nothing else. I just wish that there would be quicker commnication between the patient and the staff. The health care profession seem to forget that women are run down and painful and just a little bit of empathy and listening would go a LONG way. Sorry.....rant over :).
That they actually give me decent advice! I'm looking for consultant number 3 after the last gynae told me to get pregnant. When I said it isn't that easy and I am in a lot of pain he just prescribed a ton of painkillers. I was sad and now I'm just very angry!
Information on what endometriosis was, would have saved me n my mum the heartache of looking online and getting mixed messages off Google, I had no clue n its a worry, even a breif description would have n been a big help xx
My gynaecologist is of the opinion that I have IBS, not endometriosis, despite my detailed evidence and explanation of symptoms which totally support a diagnosis of endometriosis. He insists that because I experience pain for every 3 weeks out of my 4 week cycle that it can't be endometriosis because in his words 'with endometriosis you only have pain when you're bleeding.' I'm a student who has access to a vast medical library and know that this simply isn't true. I'm due to have a laparoscopy in a few weeks time but I don't think I actually want this man anywhere near me. I appreciate he is a well educated man and deserves my respect but I actually think he's a bit of an idiot.
I wish docs could think "outside the box". Many OB/GYNs I have seen have been on the job for 15-20 years without expanding their knowledge.
For example, I asked my doc if endo on ovaries can cause hair growth in areas where women normally shouldn't have hair and two have said no way. The thing is that yes way, it can.
I miss smart doctors...
Feeling rushed and not listened to and the details are not explained enough.
I would like more information on what can go wrong afterwards, although you do get told about infection, you are not prepared for the extent of types of infections and how they would treat them if that does happen. Also if there of ways to reduce the risk such as lose weight get fit (if well to do so) as I have found out that endometriosis and obesity are just two things that may cause these infections. There needs to be more done pre op and during op to prevent infection.
time to think through the options presented then an opportunity to ask questions once you know what your questions are. I had my appointment yesterday, and it is today that I know what I want to ask. My next appointment is months away.
The Ob/Gun Dr. I seen today. Wasn't familiar with me and my history. Wouldn't listen to me. Or believe me when I told him. What I'd been told before. By my On/Gyn. He said, that Endemetriosis can't come back after a Hysterectomy. He's wrong. Oh yes it can. The only reason I don't have the Dr. I had before... Is because I moved out of state, and got Married. They believe I have it back in my Abdomen. But this Dr. today said, that can't happen after a Hysterectomy. Wrong!
A better On Dr. That's not arrogant, lack knowledge, and is more understanding. That admits their mistakes. Better listening skills and communication. Not rough doing exams, but more gentle. And that is helpful.
I already voted. Other because I feel they need a lot of help in all areas with this. It's not right the way some Dr's. treat patients. And have such a lack of knowledge. About Endometriosis. And aren't good doing exams, because they hurt you so bad. Not taking you serious about how much pain you're in. And not seem to care. And being rude and argumentative, with a patient. And arguing with facts they've been given. Along with a diagnosis is just wrong.
I would want more time to discuss the disease and talk about newer treatment options. I would also like better cocktails for pain management as I have one physician managing the pain and another the Endometriosis.
I always find that due to my age, my opinions are disregarded. I've been going to see my GP for pelvic pain since I was 11, and even though it was leaving my physically sick and crying for the majority of my abnormally period (which lasted up to 14 days), I was told this was a normal thing that all girls went through. When I was 14, I'd become so anaemic through my period problems that I was almost given a blood transfusion - and still they didn't start listening until I was 19 and started to add painful sex to my list of symptoms.
Yes!I think that age plays a huge role in how doctors take your seriously. I was told for so long that i was young and that the pain was "normal"... pretty much to just suck it up and not be such a wimp about it. It has become more and more debilitating and at 21 I find that I still cant truly be heard. Hopefully things will get better
More contact after surgery
I'd actually like to have been examined rather than everything being done across a desk looking at scan reports. It would also be nice if he could have acknowledged that the adenomyoma and ovarian cysts on the ultrasound may cause pain instead of whitewashing them. I felt like I was on a conveyor - quickest possible ideas of what is wrong and out. I don't think the level of pain was really acknowledged enough nor how to deal with it.
All of the above. Any discussion/explanation about anything would have been fantastic, respect, being allowed to share my concerns, and not being rushed through.
I had two laparoscopies and I've yet to see anyone for a follow-up. My GP has been fantastic but my actual gynaecologist has been terrible tbh
to not be fobbed off at every angle and for someone to actually care about the utter pain and discomfort i am in daily. so disheartening and upsetting to think just because someone doesn't understand it they don't care! unless we were to find gynecologists who actually suffer like we do we will always be fighting a losing battle 
Other - all of the above
I had to repeat myself too many times to too many doctors. There was no continuity in the discussion. Different doctors, different answes. I got discharged last year by one of my consultants team and now having issue with the mireana they implanted for the second time. My GP is far from happy.
How can we pick one?! They're all important and would all help.
I've recently been referred to the endometriosis clinic in Bristol. They are brilliant. I've been assigned a nurse who I can email or phone anytime with concerns.
Hi I had my surgery at Southmead at the end of September, Sanjay Vyas did it. I haven't been assigned a nurse? What Endometriosis clinic do you go to please? I go to the Endo clinic at Southmead, Coltswold building.....? I only got Southmead and Sanjay Vyas because I started to go private and then he offered to put me on his NHS list.... Much love Jo 💛
All of the options would be good really!
Although my gyni is a lovely person and had listened to everything I've said and couldn't be more understanding, I do find that I wait months for an appt and then he's keen to get me out of the door ASAP!
Possibly the worst appointment I've ever had with any health professional! Didn't listen to a thing I said and the outcome is that I have no treatment plan in place other than really strong pain relief for at least four months.
Honestly I have a great gynaecologist but at the end of the day he's a man. Without sounding like a crazy lady it just isn't enough to be able to know the problem and another to live it. I feel like I didn't get enough information about what endometriosis really is just try this and that and we will go from here. It's so frustrating so I would want a lot more information definitely!
Hi I used to use the old endo board, which was set up for example as general, treatments, surgery, fertility and fundraising. It was really organised into sections and people knew what to put there post under. Today I have signed back up and it looks like it has all been changed but looking at it, I feel posts could just get mixed up etc and it doesn't feel like how it used to x
I voted other. I would just like doctors to recognise the signs of endrometiosis and want to diagnose it. Every female in my family has had it so far and the doctor still didn't want to refer me. Just got different pill after pill and non worked. It's taken 8yrs to finally be refered to see a gyne that specialises in endrometiosis and even now I'm scared there just gonna do the same. It needs to change its not fair on people.
Correct / up to date information (my gynae told me that fatigue is not a symptom of Endo, that my fatigue must be due to something else)
I voted other because all those options are really important!! I would also like to say that I had a internal examination at my last gynae appointment, I was grateful he took me seriously and seemed to really care about what was going on in my body and didn't just listen to me for 5 mins like the last gynae I had (who told me to come back when I was married and wanted to start a family when I'm about 30). I think he took me more seriously because he could see how much pain and discomfort I was in when he examined me so I would say that even though the examination is gonna be painful and hurt you it helped me get my laparoscopy and be taken seriously.
Better listening skills & respect for my views: Every time I have spoken to a consultant they have tried to pressure me into using hormone therapy, even though it has never done anything for my pain. A particularly nasty consultant all but bullied me into having a coil fitted, which actually gave me 3 months of non-stop pain and frequent agony - I endured it, and even after telling him my plight, he asked in a firm baritone, "are you sure you don't want to try it for another 3 months".. I will never forget the nurse who held my hand as I cried after it was removed.
Doctors I have seen also strongly "encouraged" hormones which I had already tried several with nasty and debilitating side effects. Even after telling one doctor that the nuva ring was making me have suicidal thoughts (something I have never experienced before the ring) they still pushed more similar birth control on me. I'm sorry this experience happened to you. I feel your pain 100%
I hear this so much girls. Straight after my laparoscopic surgery I was pushed into trying hormonal treatment. I explained my strong view of staying away from this due to the extensive history of breast cancer in my family, it hasn’t missed one woman on my mothers side.
I expressed this so strongly and I was told this was pretty much my only option. I was told that hormone therapy would treat this condition. This was explained to my by a gynaecologist!! The same gynae who told me that my bowel was stuck to my pelvis and although it’s causing me severe discomfort she’s just leaving it like that, with no further explanation!! It’s crazy what we have to put up with!!
One OBYN I saw was more concerned about me not using a condom while having intercourse (with my partner of 2 years) than the actual intense pain from sex I was trying to explain. Not sure of it is because this was a Male doctor? Either way I was so discouraged and felt that I had been shamed for my sexual activity rather than heard for my pain. The pain has been almost consistent, always with intercourse. I wish some doctors would better hear their patients on a level that goes beyond judgement.
I would say ALL of them. Many of the gynaecologists and doctors that I have spoken to aren’t aware of this condition or even suggested it before my diagnosis - although I was showing classical symptoms, including bowel and bladder involvement. I was often dismissed and was only referred for laparoscopy after a year of pushing.
After my laparoscopy I was discharged back to the care of my doctor, given no further information on the condition or as to what the next steps would be. It’s a very confusing and emotional time, and everything was rushed over whilst I was still under the influence of the general anaesthetic. They told me my bowel was stuck to my pelvis but they were just leaving me like this.
I think there’s still a lack of understanding surrounding the condition with a lot of GPs, especially considering how common the condition actually is. Another thing I find is that GPS commonly want to mask or ignore the condition with contraceptives without acknowledging the condition and treating it properly.
This survey made me feel so much better...just the fact that someone is asking that question.
My last visit with my consultant was to explain the results of my MRI scan post-lap. He gave me bad news and then "sorry, I don't know what to say to you". I've been to see 6 doctors and truly feel like nobody can help me.
Recommendations to deal with endo seem to be:
1. Have a baby ASAP
2. Chop it all out
3. Take hormones
Agree with this Katy. It’s almost as if they want to mask it (by taking hormones or painkillers) and then get us out of the door. Why should we complain if we are not trying for a baby at this moment it time, right? This is almost every GPs or gynaecologists stance that I have seen.
I just want a better quality of life and to preserve my fertility. Why is this so wrong?! If having the correct surgery or coming up with the correct cocktail or painmeds/ hormones can help with quality of life, I say they should be doing everything in their power to do so! But my question is, why is getting a diagnosis so hard and why is this condition so common yet so unheard of?
Yes...and it has very often felt like they want to cover their a**es as much as possible because they don't feel sure about treatment. For them its a risk management strategy and causing the lowest possible amount of fuss with the patient.
It is a complex condition and I would probably do the same if I was a doctor! But it leaves us with nowhere to turn.
Here's to improving the quality of our lives and preserving our fertility, like you say.
I hated my two old gynes one never told me anything after my first surgery.... i was in hospital overnight due to heart problems and still never heard a word from her. Not until 6 MONTHS later when i finally got a follow up.... my second Gyne told me i was a liar, that i had never had surgery and that i was attention seeking....yeah safe to say i refused to see him again pretty fast too... My new gyne is amazing and a specialist in my condition. So far i really like him. I just wish the new hospital was closer because to see him i have to travel so far.
