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 FLIPPING 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 absolutely unbelievable! 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 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 heck 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 fails to be completely mind boggling!
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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avelvetcrowbar
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Next time, when you arrive at the reception desk tell them you want to see the consultant himself, I think you have the right to ask that, even if it means you wait longer. Be firm with them.
This time, phone your consultants secretary and explain how confused you are, they are normally very understanding and helpful. Ask for a copy of the letter being sent to your GP. This may help you understand better. She also may be able to offer you another appointment or a telephone call or something to put your mind at rest.
Failing that put in a complaint with PALS at the hospital. It's not good enough if you cannot understand the consultant and he does not get your medical history correct!
I completely understand how frustrated you must feel.
Good advice sue,but I always ask for a copy of any reports,when you reach the secretary,on your appointment day ,I`am a man but I feel her frustration,i`am into my 6th year in neurology,3 consultants later I have now been passed back to number 2, still no diagnoses,the last appointment I waited 10 months,got 20 mins with him ,I hope Jordan to get sorted soon,i watch these blogs because wife has ovarian cysts,colin
Thanks Colin. I'll need all the luck I can get! It's also great to see that you've took such an interest in your wife's condition and i'm sure she really appreciates it.
Sorry to hear that you've spent so long trying to get a diagnosis with no help. Fingers crossed that you get the answers that you're looking for. I'm going to make sure that I request copies of everything I can get my hands on in order to stop it happening again.
The day after my appointment I must of called my consultants secretary about 40 x but it kept going to answerphone so i left a voicemail message just incase. I also went online and searched the internet for both his personal email and also his secretary's and sent an email explaining what had happened and how upset and confused by everything I was.
I tried to call again the next day and got through and his secretary had also emailed me to let me know that my consultant has requested I attend a follow up appointment with him in 2 weeks, also he is supposed to be calling me over the next few days with my notes at hand in order to set the record straight in regards to the conflicting information.
I made them aware that I didn't want to have to put in a complaint if it could be avoided but that I was really upset by the whole thing.
Hopefully i'll have things clarified for me and from now on i'm going to request copies of all of my notes that i'm able to.
Excellent, glad to hear things are being sorted out. The secretaries are the mainstay of the NHS, in my experience they are very helpful and keep the NHS going! I'm on first name terms with a couple of them! Take care and let us know how your follow up goes. xx
I will indeed! They definetly are. I've met some really lovely helpful secretaries and nurses so far! also a few less lovely ones too but it's the caring helpful ones that stick with you.
Fingers crossed I can get this all cleared up before going for my surgery.
I can see your frustration here. It sounds as though you need to clarify some things before you go ahead with surgery. You mention your medical notes: have you got your own copies of this and if so did you have it with you at the time of the consultation above ? It is always useful to have the same information in front of you that the consultant has and if in doubt take copies with you to give the consultant. This helps a lot to avoid misunderstanding.
It's always better to stay calm no matter how desperate/frustrated you are during a consultation.
Usually I do take my nhs file with the majority of my letters/hospital correspondence aswell as copies of reports on my last proceedures. As I was going to see my consultant who was the man who did the last surgery I didn't think it was necessary but instead I had another doctor so I had no way to argue with what he was saying. I'm definetly going to ask for copies of all documents that i'm allowed in future to make sure that it doesn't get this confusing again.
The day after my appointment I must of called my consultants secretary about 40 x but it kept going to answerphone so i left a voicemail message just incase. I also went online and searched the internet for both his personal email and also his secretary's and sent an email explaining what had happened and how upset and confused by everything I was.
I tried to call again the next day and got through and his secretary had also emailed me to let me know that my consultant has requested I attend a follow up appointment with him in 2 weeks, also he is supposed to be calling me over the next few days with my notes at hand in order to set the record straight in regards to the conflicting information.
I made them aware that I didn't want to have to put in a complaint if it could be avoided but that I was really upset by the whole thing.
This has happened to me on several occasions. Report this to PALS I have done so in a few occasions now as I'm at my wits end with doctors. If you do so you may get another appointment with the actual consultant I did within a week. Always ask that it's the consultant you want to see and not registrar. After reporting to pals I have never seen a registrar again I always get to see the consultant not that they know much either. Good luck x
Thanks for your reply Kate. It's really appreciated.
The day after my appointment I must of called my consultants secretary about 40 x but it kept going to answerphone so i left a voicemail message just incase. I also went online and searched the internet for both his personal email and also his secretary's and sent an email explaining what had happened and how upset and confused by everything I was.
I tried to call again the next day and got through and his secretary had also emailed me to let me know that my consultant has requested I attend a follow up appointment with him in 2 weeks, also he is supposed to be calling me over the next few days with my notes at hand in order to set the record straight in regards to the conflicting information.
I made them aware that I didn't want to have to put in a complaint if it could be avoided but that I was really upset by the whole thing.
Hopefully i'll have things clarified for me and from now on i'm going to request copies of all of my notes that i'm able to.
I feel very sorry for you velvetcrowbar - you certainly do not deserve to be treated like this. It is so ridiculously unfair.
I agree with the other posts, you should consider reporting it to PALS and try to get a message to your original consultant, or his secretary, explaining what has happened and how very distressed you became as a result, and ask if under these exceptional circumstances your original consultant can fit you in at short notice to see you. Good luck!
The day after my appointment I must of called my consultants secretary about 40 x but it kept going to answerphone so i left a voicemail message just incase. I also went online and searched the internet for both his personal email and also his secretary's and sent an email explaining what had happened and how upset and confused by everything I was.
I tried to call again the next day and got through and his secretary had also emailed me to let me know that my consultant has requested I attend a follow up appointment with him in 2 weeks, also he is supposed to be calling me over the next few days with my notes at hand in order to set the record straight in regards to the conflicting information.
I made them aware that I didn't want to have to put in a complaint if it could be avoided but that I was really upset by the whole thing.
Dear Jordan, I have lived through your horror a few times and it's not the fault of your NHS. I live in NYC and pay about $400 per month through Medicare so I can access what are supposedly the best doctors in the world. I am 71 and am determined to never see a gynecologist again. From the time I was 14 years old I had constant horrible bleeding and terrible pain during menses. My first baby was born through a clinic in Brooklyn and I had to pay what was considered a low fee at the time to sit in a crowded clinic at 8 AM every Monday give urine and wait to about 11 AM to see a doctor and you got a different doctor every time. One time I was about 8 mos. pregnant and the doctor said, Oh I guess it'll be another 3 months for you (I didn't look that big) and I cried "Oh I hope not." and he then looked at my chart and chuckled "guess not." Every Monday when they called us for the gyn exam we were marched through a series of exam rooms where I could see the women with their legs up uncovered for all who were taken to our exam room. I was 18 years old and we had no health insurance. My delivery was horrible as the doctors kept telling me that I was not dilated even though I was in agony and all sorts of interns kept coming in and doing rectal probing which hurt a lot. One of the doctors saw my water was bulging and he broke it and my baby came rushing out splitting me open from vagina to rectum. (She was 8 1/2 lbs and had a large head.) I went crazy with the pain and jumped up over the rails screaming while a bunch of hands grabbed me. I woke up hours later in a ward with 9 other women. I was covered with needle marks and no one could tell me whether or not I had a boy or girl. I managed to go home a day and a half later refusing to pay the fee the clinic had doubled while I was under treatment and the clinic sent bill collectors to bang on my door even though I had a card that said I was paid in full. I could not sit well until I got repaired by a lovely doctor I had for the 2nd child delivered her. Before I found this lovely female doctor (a holocaust survivor) I went to a gyn doctor for the menstrual pain and the painful vaginal tear. I was only 19 then and was a fool who didn't catch on that he was molesting me every time I went (twisting my nipples and probing my genitals while he asked me did I feel anything.) My sister-in-law clued me in after she went to this same doctor. We moved to Staten Island and I lost the gynecologist whom I had really liked. I continued to go to doctors for the excessive bleeding and most of them just dismissed me and told me I was hysterical although a couple said I had large fibroids but not to worry they would shrink eventually. I was told I had a tipped uterus Ibs etc. but nothing was done. I had constant fungal infections and urinary track infections and was terribly constipated. All the specialists were useless and I started depending on my family doctor for my help. He saw that I was really bloated during my periods and gave me water pills to take a few days. I had three terrible bleeding episodes where I was hospitalized and had to have a DNC. My cousin was a doctor an ER surgeon and he advised me to have a hysterectomy vaginal because in his experience the fibroids were not going to get better and I would continue to suffer. I was 37 at the time and afraid of this and all the doctors said surgery was not a good idea. I gave up on gynecologists and GI doctors who just pushed tranquilizers and laxatives (which made the bloating worse as I had a rectocele this name I only knew years later when a pelvic doctor saw the repair but I told the doctors I had to put my fingers up into my uterus and push the stool down through the wall.) A few times I asked after looking up my symptoms, "Could I have endometriosis?" and was told no. Finally struggling with this stuff for years having all your symptoms while working full time and being a single mother with three children I started going into menopause. I had irregular bleeding and sought out a woman doctor nearby thinking (WRONG) that a woman would be more sympathetic. She examined me and prescribed some hormone pills. Then she told me "If it's giving you so much trouble your might as well have it out - after all you don't need it anymore." I was really shocked and didn't want to do it then. I was 52 at the time. The hormones made me worse and I started bleeding every day (this was my reaction over the years when I tried these and even birth control pills). So I went back and agreed to the surgery. I was told it would be about one hour and I would go home a day later. It turned out to be 8 hours of surgery and 2 transfusions with effusive apologies from the doctor to me and my daughters that "they had not know how bad the situation was." All this was verbal. A surgeon who had been called in to operate on me after the surgery started came to see me and talked to me about it. He told me my rectum and my cervix had been completely fused and it had been like "reverse knitting" to cut save the cervix. I hardly listened to him because I was overjoyed at the fact that something had finally been done. I was sure I would get better and my life would now be normal. Unfortunately I now had nerve pain in my groin which actually took my leg out and my rectum refused to open when the stool came down. All of this took years to diagnose and as I had a bad back things were complex. I got a clinic in NYC to do one laporascopic lasis to clear away some scar tissue and I got well enough to go back to school (I had been laid off from my job at Chase and couldn't find another job) to get my masters in education. My primary doctor warned me that scar tissue could come back. I continued to have terrible rectal pain and intestinal blocking for which I went to the ER was sent home with Darvocet and GO-Litly which made me vomit up everything. I would then have to evacuate the stool manually and have a high end enema to find relief. I had constant bladder pain so I went to a combination urinary/gyn woman doctor who sent me to a rectal doctor and told me to come back to her if the pain continued. I like her and trusted her I went to the rectal doctor and he sent me for months of rectal retraining which didn't work and made me worse (he was mad about the "IT WORKED FOR ALL MY OTHER PATIENTS HE SAID" loudly. So I went back to the gyn doctor waited almost 2 months for an appointment and waited in a room with a dozen patients for about 2 hours until I was shown into the exam room. I found a strange woman doctor who I didn't know at all and was told my doctor was out on maternity leave. She was really cold palpitated my belly which really hurt and told me I was fine. I begged her that I couldn't live with this pain and she told me really coldly "You have no choice you have to live with it." I got hysterical and told her I couldn't stand the pain and I had another choice. I was weeping as I ran out of the office. I just sat on a stoop near the subway and really thought seriously of just throwing myself in front of the train. I decided to call my daughter Sheila and she comforted me a bit. I had a long trip home and when I got on the ferry she called me and told me she had a clinic for pelvic pain in New Jersey that could help. I felt some hope now. I got home took off my clothes put on a house coat and the Police came to my door and told me they had to take me to a Mental Hospital for and exam as I had threatened suicide (which I contemplate all the time especially after seeing some doctors). The hospital which has a mental war is a crumbling old Public Health hospital run into the ground by the Sister of Charity who took it over and bankrupted it. Garbage and people who have absolutely no other choice go there and the staff is underpaid and overworked. Any monies collected by this clinic never seem to have an impact of the upkeep of the buildings (which were supposed to be taken over by Salvation Army in 2008 but the crash stopped this.) After being interviewed by a lovely young woman to whom I lied completely that I had never attempted suicide and never really though seriously about it) I was allowed to leave as long as I came for sessions with a psychologist. Now I thought I had a new hope a clinic which would help with the pain. I went to a psychiatrist and a psychologist which were pretty much a cruel joke. The psychiatrist just looked exhausted and talked about anti-depressants which I had tried (they made me suicidal and in 1983 I had taken an overdose and ended up in a hospital) and which had just made me more tired, more depressed and did nothing for the pain. The psychologist just talked to me had no idea what I was going through and had me sign a progress plan whose goal was "Find out why Maureen is Depressed." I was paying for a premium health plan and was covered for this clinic but the receptionist refused to let me even see the psychologist until I gave her a $20 co-payment. The building was falling down I had to go down long halls where mental patients on the verge of homelessness wandered. I asked to come later in the day as mornings were very painful until I managed to go to the bathroom but i was refused and told to come at 8 AM. I called the head of the department and he apologized and didn't even bother to defend the place. He put in a call to the receptionist and she just glared at me balefully when I went for my 3rd visit. I never got my $60 back from seeing to Psychiatrist and 2 visits to the psychologist. When I went for my 4th therapy session I sat in the waiting room in pain stared at by the receptionist and the therapist finally arrived and hour late carrying her tea and asking me if I would like some. I looked around and lost it telling her the place was a joke
and I didn't have the energy to deal with all this. I stormed out and went home determined (AGAIN) never to see a therapist again. I went regularly on a 2 hour drive to the Athena Pelvic Pain Clinic with my daughter for almost 2 years where they tried to inject stuff into my scar which made me scream in pain. The first visit was with a rather pleasant salesman type who gave me a lecture on their work for pelvic pain. He gave me a DVD which showed all the women they had helped. I had to call 2 months ahead for a visit and every time I was told that they would get approval for botox which might really work. Different assistants talked to me and my daughter. I went for tests which they said I had interstitial cystitis and bladder spasm and they prescribed Elmiron which does seem to work but you have to take it every day and even with my premium health plan I have to pay a co-payment for this and living on Social Security alone this adds up. But they continued to say they would get the Botox although my health plan kept denying it. I filled in all sorts of papers but my health plan would not pay. The Athena clinic kept charging me and my health plan for every visit. On my last visit I was shown into the exam room and an assistant of some sort examined me (why I don't know) and when I got dressed she sat down on a computer and asked me to tell her my whole medical history which i had typed out on 3 sheets of paper and given them 2 year before. I asked her why I had to repeat this and told her I had it all written down. She looked really annoyed when I handed the sheets of paper with my surgeries illnesses and therapies and typed in a few words and stopped just looking at me. She had no answers and told me they would get back to me. She went out of my room and I had a giant temper tantrum where I threw the hangars and gown on the grown relieving my frustration to some extent. My daughter then gave me a lecture about controlling myself and I told her what she could do with that lecture. I never went back. I went twice since to a gyn doctor for my Pap tests and was told they could do nothing for me. I haven't seen one for over 7 years and am determined that my next and last exam will be on an autopsy table and not before. I have increasing pelvic pain and my primary has sent me for xrays which show oteitis pubis (a degeneration and chronic inflammation of the pelvic girdle for which there is no answer.) I have had Ketamine treatments for chronic pain which number up all my other joint pain (I have some kind of inflammatory arthritis and have had knee replacements and now I need shoulder replacements) EXCEPT FOR MY ABDOMINAL PAIN!!! I was high as a kite and every part of my body blissfully numb but crying in pain because I had not had a bowel movement for 3 days despite tones of stool softener. The pain finally became bearable after tones of senna and more colace and I was sent home. I've had epidurals for my back and just recently and epidural for pudendal neuralgia which took away the belly pain for 2 days - the first time in as long as I can remember that I did not have pain there. I was told to go back for more but these treatments are temporary and I am so disgusted with the doctors and the treatment that I just want to stay home and die. In the sixties I lived with my grandmother who suffered with degenerative arthritis and refused to see any doctor than this old Polish man who just gave her advice on her bowel problems and low doses of cortisone. My grandfather we had to drag on his knees to the hospital when his hernia of a decade rendered him unable to stand up. (He was about 60 then.) I remember my grandmother saying to me, "What is this with AMERICAN doctors - they are like gods?!! In Poland they are technicians and we respect teachers, philosophers, historians and the like. But here they are revered like gods!!!"
I read some of the stuff here and talk to other patients like me as I wait or am transported in vans back and forth for doctor visits. It's curious to me that you on this site who are in the UK seem to be blaming the NHS for your problems when we over here have the same and worse and WE HAVE TO PAY FOR IT!!!! This is not a NHS problem this is a DOCTOR ABUSE problem. These doctors all look for an easy answer. (There are, of course, the exceptions.) If your problem is a complex one they want a computer code for it a computer code for your treatment and a prescription which will keep you happy. I hear these days from doctors "the idea is TO DO NO HARM," when the conversation drifts towards a patient wanting some kind of surgery. My daughters have the same gyn problems I do and have been back and forth to the ER with pain but even a laporoscopy is looked on as "HARM." Years ago there was more of an effort to use minor surgery to try to investigate abdominal problems and there was probably too much of it. Today everyone is trying to find the perfect pill unless you have something they can see such as terminal cancer or a bad heart. A friend of my daughter's continued to have pain and they found a cyst the size of a grapefruit on her ovary. (Why this grew this large when she had gone regularly for checkups to the doctor is a mystery.) She went to NYC to Columbia and had it removed. She went home and had a year's misery until it was obvious she had a bad hernia. She already had a scar from her pubis to mid chest and they cut her bikini style. They put in mesh and she went home for another year and a half and had even more pain. The mesh had folded and she had to go back in for more surgery. The last time I visited her in the hospital it was a semi-private room which they had turned into a three person room. It was awful almost no space and three looming TV's booming at once no chairs for visitors. I didn't see her when she had the mesh redone. She had developed an infection and was told she had to stay longer but she had to give up her room She would have to be in the hall for the rest of her stay as another patient had booked her room and it was no longer available to her. She had some local political connections and exerted some influence and was given and isolation room which she said was "fine but you realize no one comes." Finally last year she retired from the NYC police force and took her savings and went to a bunch of plastic surgeons until she found one to take the $10,000 cash and do a tummy tuck. They cut out all the scar tissue and tucked her tummy and she has had much less pain and constipation since. I write all this because I don't hear stories much about what the health situation is in the USA from patients who need to complain. What I do is find stuff to which I can relate from people in the UK and Australia who seem to think this is because they have socialized medicine. This is not a problem with socialized medicine. This is a problems with health being a source of money either from the government or from private people. The world is inundated with ads showing elderly people (of which I have become one) tripping along having great sex and still being beautiful. "Wellness" is the new slogan where, only if the patient does everything right, restrains from any bad habit, eats perfectly, exercises correctly, takes the right meds and LISTENS TO THE DOCTOR they can live well and perfectly. This takes regular checkups which used to be performed by your family doctors such as heart, lungs, blood tests, breast lumps, skin exams, PAP tests. Now the patient is sent to a number of different doctors who couldn't care less about the whole patient they see and get paid better for one visit that a primary can for a year. Now computers will diagnose patients with the touch of a button. We in the USA suffer the same humiliation wait times and strange substitute doctors that those with NHS but we pay millions more than you do and out of our own pockets on top of tax payer money. I am convinced that, until patients get it into their heads that THE DOCTOR IS WORKING FOR THEM - THE DOCTOR IS GETTING PAID BY THEM - THEY ARE THE BOSS - THEY ARE THE CUSTOMER - NOT HIM - medical personnel will continue to do the least harm and pay no attention to doing GOOD. More than enough said. Good luck and hope you find some relief somewhere. I've begged – it only invited contempt. I've cried – dismissed as neurotic. I've gotten angry – dismissed as psychotic. I've kept quiet controlled my anger quietly listened to everything the doctor said and then realized I'd tried it before and it hadn't worked. I'm 71 now and I look forward to sleeping and dying most days. That's how it is.
I am so sad to hear that you've had such a long struggle and had such awful treatment. It really is heartbreaking to think of how many years you have suffered with no relief or helpful medical care. To a certain extent I can completely understand how you must feel. I always tend to leave my appointments in annoyance or tears. Sometimes it feels utterly impossible. It's great though that you're willing to share your story in order to encourage other people that this happens all around the world and is not fair or just.
I'm hoping that you do manage to find some relief.
Sending lots of love.
Jordan.
x
I have also seen a lot of consultants on the NHS. I recommend Germany instead. Try and see if it is possible to get a consultation with a private (english speaking) consultant there.
I have been to Germany on and off over many years and seen doctors there from time to time having lived there. I think it is a pity they don't have a multi-disciplinary approach to persistent pelvic pain. Most consultants there work in isolation, they do a lot of unnecessary and costly procedures and the cost of healthcare in Germany is not far off that of the USA ! The one great thing about Germany is the spa facilities, therapeutic massage and other treatments which are often covered by the health insurance. I had this for neck pain when I was a newly qualified teacher working in Germany many years ago, was told it would never get better but it did after several sessions with the therapist , wrapped in heated volcanic mud ( fango ) !
I agree about asking, or should I say insisting, to see the actual consultant. I did this last time and did see him.
I've had similar experiences to you in the past - diagnoses thrown around and rescinded. I actually had a PCOS misdiagnosis for 10 years. It turned out to be a combo of autoimmune thyroid disease and endometriosis and polycystic ovaries that together were mimicking PCOS as a syndrome.
I insisted on being tested for the syndrome properly (I ended up being tested twice in two different hospitals). It is an endocrinologist who does these hormone blood tests. In that respect you may wish to push for an endocrinology referral and hormone & insulin resistance testing if you've not already been given that. That would 100% confirm either way.
I would also write to your consultant and copy in your GP, and ask for confirmation that you do or do not have endometriosis - you can mention that you were left confused after your appointment and in doubt etc.
Since I posted and the day after my appointment I must of called my consultants secretary about 40 x but it kept going to answerphone so i left a voicemail message just incase. I also went online and searched the internet for both his personal email and also his secretary's and sent an email explaining what had happened and how upset and confused by everything I was.
I tried to call again the next day and got through and his secretary had also emailed me to let me know that my consultant has requested I attend a follow up appointment with him in 2 weeks, also he is supposed to be calling me over the next few days with my notes at hand in order to set the record straight in regards to the conflicting information I had from the under-doctor.
I made them aware that I didn't want to have to put in a complaint if it could be avoided but that I was really upset by the whole thing.
Hopefully i'll have things clarified for me and from now on i'm going to request copies of all of my notes that i'm able to.
That's fantastic news Jordan! I'm so pleased for you. I hope that they follow through on explaining all this and give you the information you need so that you know how to proceed in treating & managing your condition. Xx
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