Tuesday I had my 'consultation' with my gynecology specialist. After waiting over an hour over my actual appointment time I was called. (Hey it's the NHS) Only it wasn't him, it turned out to be some (i'm presuming) trainee consultant acting on his behalf even though I had seen him actually in his clinic.
So first of all I was a little bewildered as to why I had another random person to speak to. He seemed friendly enough although he was foreign and had quite a strong accent so I struggled to understand him for most of the actual appointment.
I had to (as usual) explain everything from the start going back 10 years, explaining all my symptoms, surgeries and everything up until now. First annoyance was when I told him I had been diagnosed with Polycystic Ovarian Syndrome several years ago to which his response was " just because you have the cysts on your ovaries doesn't mean you have the syndrome" So straight away I was pretty taken back. I'm a million % certain I have PCOS as it was both diagnosed by laparoscopy and also by my GP as for years I had suffered with severe acne, weight gain, hirutism (excessive hair growth) heavy and painful periods and so on. I'd atually love it if it was simply the cysts on my ovaries and not the latter. That would of been fabulous. I brushed it off anyway after telling him that I had been diagnosed and also had the syndrome for years.
I was asked to rate my pelvic pain on a scale of 1-10 on a daily basis, not in relation to menstruating, and I gave a 9 and then I was asked to rate it based on the time of menstruating and gave a 10. He scribbled all this down. I tried to tell him calmly ( holding back tears) just how much of a dominant effect my pain has on my life at the moment; that it makes going to the toilet excruiating, sex is a distant notion far away on a horizon because i'd prefer to be bludgeoned to death that experience the amount of pain it induces. I told him the fatigue and pain was mind-numbing and it had had a strong impact on studying for my degree and my quality of life in general.
After listening to me he scribbled a little more only to excuse himself to "consult" with my actual gynecologist. He came back almost 5 minutes later with a little encyclopedia of medicines and their uses. I saw him instantly flip to the z's. I knew straight away he was going to suggest zoladex. I tried again rather pathetically (at this point feeling really disheartened) to tell him that I was reluctant to try tablets again for months on end in the hope that it might make a difference. I'd prefer surgery because it's more pro-active and actually makes a difference in regards to the pain I feel. (I was about 4 months pain free after my last surgery) He gave me a dubious look and began the "not advising surgery speech" because if they can- they'd rather fob you off on medication that doesn't help instead. It was at this point I burst into tears and told him I couldn't possibly entertain the idea of another 6 weeks with this pain nevermind 6 months.
Again he got up to go and "consult" with my consultant.
After about 10 minutes he came back again and sat down with his little book and then said I should try microgynon.
It was at this point I wanted to both sob hysterically and grab his shoulders and shake him violently.
I'VE BEEN ON A COMBINED CONTRACEPTIVE PILL FOR 9 FUCKING YEARS.
And if anything- it's done absolutely NOTHING.
I just kind of sat there exasperated whilst he launched into his medical babble about my actual gynecologist trying to avoid surgery.
It was at this point that he said something that was an absolute mind-fuck. I'd spent most of the appointment trying to guess what he'd been saying or asking him to repeat himself or the question he was asking. I'd taken in my boyfriend ( I don't usually like taking anyone close to me into my appointments as I usually try to hide how bad I feel from them, that and it's super personal) and he said something along the lines of "the surgery didn't show/find any endometriosis" or thats what my boyfriend claims he said. I couldn't understand anything at this point as I was just trying to wipe my tears and not bawl like a lunatic. He excused himself AGAIN, to go and speak to my consultant and came back afterwards saying that they would put me for surgery if that's what I wanted.
During the time he was gone, my boyfriend turned to me and said- "what's he on about when he said about the surgery not showing endometriosis", instantly I was like.... "is that what he said?" I was completely and utterly baffled and convinced he'd said something along those lines but not actually that, am I going fucking mad?
After my last laparoscopy to diagnose and remove endometriosis 18 months ago, I was told both directly after my surgery I DID have endometriosis and also at my 6 week follow up appointment with my actual gynecologist (i'd taken my mum) he'd explained I did have endometriosis- showed me the surgery photographs of where it was found and removed (around my left ovary and the back of my womb) and told me that it was classed as a moderate case. You can imagine I was so relieved back then as I'd gotten a diagnosis and also a treatment.
Had I imagined all of this? Of course not. Where the fuck was this man getting his information from? He had kept looking at some documents he had up on the screen that I couldn't see for the life of me because I hadn't got my reading glasses on. After a quick physical examination and being given a surgery information handout and quickly ushererd out, I left absolutely confused as to what he'd said. I know I should of instantly queried it whilst I was there, but as I'd not properly heard what he had said I'd carried on talking about the next surgery. The past few days it's bugged me beyond belief. To the point where I've even been checking my medical notes and files which all have 'endometriosis' on them and explain that I had a diagnostic laparoscopy and the removal of endometriosis so what on earth. I've spent the past 2 days just completely baffled. If i'd been diagnosed how on earth could it be that this man was telling me that it hadn't been found? What on earth was going on? Had he got confused? Am i a raving lunatic who has imagined the whole thing? Or did he simply mean something else or was he talking about the surgery in the future that may not find any?
I'm so utterly confused and upset and just generally stressed as to why he said that- where he had his information from, why had i been told something different?
At this point I'm waiting for a date for my next surgery, but am unsure as to how I can actually check what had been said without having to have an appointment.
I don't know if anything similar has happened to anyone else but I'm now a very paranoid and confused lady. The NHS never fail to be a complete mind-fuck.
This is where I'm at now. I don't know if it's pointless to try to call his secretary as I have no idea if they can relay any information like that to me.
I'm just so totally confused.
It's things like this that really make me doubt the NHS.
Not only can they not even give you an appointment with your actual specialist despite waiting months and months just for the apppointment but then you get told completely conflicting information about the conditions you have.
UGH.
Has anyone else experienced this?
Jordan.
x
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Hi Jordan I really do feel for you I had a similar issue with my doctor this time after him telling me to "have a baby" I broke down and told him that I couldn't have a baby when sex was not on the top of my list due to pain. He also told me my MRI had come back clear with no sign of Endo, yet when I got my letter back it clearly stated that there was some endometrial plates also that I had fibroids. He at first said no to surgery but after my breakdown (and my mum hearing how her daughter couldn't face sex) he finally agreed. It only got worse when he told me I needed to lose weight being a 14/16 I am bigger that usual but that is due to the bloating I constantly have.
Hi Chelle! Thankyou for your message! So sorry to hear you're having the same sort of trouble! It's absolutely ridiculous how often this happens! It's so confusing when you have so much conflicting information and when you're relying on these professionals to diagnose you properly it's even worse. I'm in staffordshire in the west midlands. I've gone from a size 10 to a size 14 and have been told that I'm in an unhealthy bmi and I need to lose weight. Not that I'm not trying! I'm so bloated all of the time that I can't even fit into jeans or trousers at all. I have to have elasticated waistbands and leggings or tights. It's terrible
Thanks again for your message- it's nice to know that I'm not the only one having some much trouble just getting a correct medical diagnosis. Since I last posted I managed to get through to my consultants personal secretary after sending several emails and one directly to him aswell and have been requested to go for an urgent follow up appoint in 2 weeks and also my consultant should be calling me to discuss what was said by the other doctor so we can all be put on the same page!
Hi, I've had many similar experiences to this, and also worked in an NHS hospital for 5years. Even knowing how the system works did not help me. You can speak to PALS (patient advice liaison services) at your local hospital to tell them how you were treated. They will then contact the department involved and investigate for you. They should at least be able to find out the latest info on your case. I encourage women everywhere who are treated badly by people who have no understanding of this condition, that we didn't choose to have, to complain and campaign for better standards of healthcare. I showed symptoms from the age of 12, was told at 16 to get pregnant but not necessarily to have the baby, finally diagnosed at 18 by laparoscopy, and in the last 15 years tried every available treatment. Now I am living abroad and soon to have a test to see exactly what hormones I have in my body, and have the option of bioidentical hormones (derived from natural sources not synthetic). I'm hoping that will improve my symptoms
All the best with your surgery. I hope you can find the strength to know what you want and to push for it. It sounds like you have a good family to back you up.
I'm feeling pretty confused too! I am actually going to have my first lap and I see on the letter "operation" but I hear from people its nothing! Like it's just a few small scars! So I try to gather info everywhere... I saw people write "when I woke up" and my husband is certain I can't be put to sleep for something like this... the doctor did not say anything, only " I'm going to put you on my list for lap and see you soon" why not give me some leaflet to prepare and read about what's going to happen? Why I had to quess if they will send a letter or call, when? I now found myself in a situation I have lap in 21 days I was informed two days ago and now I'm desperately trying to get holiday because how should I survive from statutory sick pay for at least two weeks after the surgery? I hope you will feel better knowing that many of us is scared, confused and we all have to go through it. I hope some time I will know everything about my endo but the truth is that nobody knows...
I completely agree with you. They F with your mind.
I went for an initial scan and tests with a private fertility clinic to diagnose Endo and cysts etc as I wasn't getting anything except a 'how are you' with someone in Gyn on the NHS. My private clinic suggested we go back to the NHS as I needed a relatively simply op and the cost would be high with them - they said we should save our money for other needs such as ICSI or our future if things worked out. They (private clinic) had already written letters on their findings, provided scans etc from my initial op and sent them across to our consultant - and copies to us.
The NHS resulted in over a year of 'on/off apts' with the same old questions "How are you" What do you think it is? have you tried, On a scale of 1-10... The pain I was experiencing at the time was quite debilitating. I had to take time off of work for these apts (which they assumed was helping) and actually I just felt I was saying the same thing on loop over and over, whilst they told me that "yes, that's what they said but they are Private and we're the NHS and need to "know for themselves". I had a similar meeting whereby I took my partner for a consultation. I don't usually bring him as he prefers to be in work, says he can't do anything and gets really angry when you wait and wait and things over-run.
One day we had an apt which over-ran from a morning apt till - after lunch as they had been busy and understaffed. I had to call my boss and put a member of staff from the hospital on the phone to confirm this (that I now needed an additional afternoon off work) as they had over-run. My consultant came into the waiting room and said with a huge grin whilst looking at us "welcome to the NHS". Anger didn't even cover it. My partner also took the whole day off saying "this had better be worth it".
When we got in she said "what can I do for you" same old questions same stupid little note taking. Our consultant had a 'training doctor?' in the room with her who said nothing. When I finally exploded and said our private clinic suggested surgery, we can't have IVF without surgery my pain levels. What don't you understand". She got really angry and said "you want surgery, I'll do it".
My surgery was for fischer clips, to remove Endo and cysts in prep for IVF'. It all moved quickly within a week. I went for my 'pre- op bloods, weight test etc. and the nurse said something really strange to me. "you're getting your ovaries removed? isn't that bit strange if you're wanting IVF... unless of course you're getting donor eggs or maybe I don't understand, please ignore me" I questioned what she said, and read the paperwork a second time to try to make sense of my consultants handwriting'. Sure enough, when I took a picture on my phone of what it said and sent it to my private clinic, she had agreed surgery to remove my ovaries nothing else. Needless to say, the following morning (day of my surgery) I had this confirmed this again by my private clinic (as I was confused and going out of my mind). I phoned and cancelled with the NHS saying I didn't consent to this surgery, it was never agreed or discussed. I had no faith in my surgeon/consultant.
I can tell by the tone of your post that you are angry with the NHS etc. Please, please, please, get whatever copies of your notes from meetings, apts and especially paperwork concerning any surgery they have planned and get a second opinion and maybe even a third opinion. I have NO faith in them what so ever, and feel my partner and I wasted maybe a year and half of this - hoping we could get IVF before my 40th birthday. She dragged things out so much and after I had private surgery she said "It's a shame because now you're too old". Haven't been back to her - complete waste of time. We're going to start ICSI with private clinic next month. I'm sorry to rant and share such a story, but I feel they (some of them don't have a heart) don't want to help and just want to fob us off and we're living with the pain and heartbreak everyday trying to stay strong and get on with our lives as best as we can and you hear a sarcastic "welcome to the NHS". I could have strangled her.
Please check any 'surgery paperwork you get signed up for'. Ask for it to be written down in CAPs and so it can easily be read and you know what you're getting'. When you're faced with a few lines of 'undecipherable scrawl you can't read and physically told one thing verbally with your partner present you think you're ok, when actually they've signed you up for something else it's quite frightening'. I was reduced to tears by someone who didn't want to do a suggested surgery from the Private sector as she just wanted to give meds, and take the easier option out. Wishing you all the best in the world. Stay strong and try not to let them get to you. If you can go private, take control of your own life without them. x
As other people have said I would request copies of all paperwork. I have requested these from my consultant and the GP. Someone is usually happy to print off copies or give you test results or you could pay and get a copy of your whole medical file. My consultant is happy to copy me all paperwork and I chase this up when I haven't received something.
As for your appointment, that doesn't sound helpful at all but I can relate to your experience. My first ever gynae appt was with a registrar (instead of consultant) and they did an internal and couldn't find anything, kept telling me to relax when I was in excruciating pain. Fobbed me off with 'the pill' and '?endometriosis'. I had said I don't know how it was gonna help as I'd been on it for 12 years. He said if you don't want to take it and come back then don't. Luckily my GP had sent me for an MRI and within a week I had an appointment with the consultant as Endo was shown on the MRI. I had an internal with the consultant who could feel the endo and could see why it was so painful and therefore didn't complete the internal as it was too tender!! So I guess what I'm saying is that now I will only ever see the consultant at appointments. If they send you to the registrar in the clinic say you only want to be seen by the consultant.
It sounds like you really stood your ground and eventually got the option you wanted.
Hi ladies, my main concern is that you keep saying gynaecologist, 2nd concern is that he is only doing surgery because you have asked for it and when you are going to put your body/health in the hands of someone you need to be really clear on what is going to happen, why it's happening, what the surgeon hopes to achieve, what results you can expect. Please I know it's hard but do not be fobbed off. Main question is he an accredited Endometriosis Consultant? If so he will openly be able to answer any questions you may have. If you need any help ask. Take care
Hi Claire thanks for your reply. My gynecologist is indeed an endometriosis specialist and the main consultant for my part of the UK.
I always try to be as concious as I can be in regards to the processes I go through, the after effects and so on but I agree it's definitely not something to take lightly.
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but I agree it's definitely not something to take lightly. 
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