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Health - - Botched procedure and Dr's closing ranks

(25 Posts)
Sweetpeasue Thu 05-Aug-21 22:38:11

Ist time on Gransnet. Not sure if this is exactly the right message for a 1st time. It's really too complicated. Would like to ask others if they have come across the medical profession at their worst and if they are dreadfully affected by it and feel completely alone. At this time, particularly, we all appreciate the NHS for the wonderful work they have done, but when things go wrong it is a very isolating experience. 10 months ago I had a investigative hysteroscopy for post menopausal spotting(had 2 before under general anaesthetic). Something went wrong, I still don't know what,but am now getting bleeding every 3 weeks. I had pain and bleeding every day for 5 weeks afterwards then pain almost daily with bleeding every 3 or so weeks. Was told he'd took away submucosal fibroid but he'd only taken away part of it, as I found out later by sending away for medical records. Many many discrepancies, too much to write in 1 post. MRI now says I have Adenomyosis but in MRI 7 weeks after op no Adenomyosis was found. It must have developed after the op. Dr said he'd taken away a polyp but Histology report says part of fibroid. Op lasted an full hr. Only meant to be 10 min procedure. Sorry but probs wrong introduction to Gransnet as I initially said. Just so distraught and down.

Sweetpeasue Thu 05-Aug-21 23:09:47

Just thought I'd add that the fibroid was a mere half centimetre. Multiple fibrous can be taken away with no trouble. Why has this happened to me? I don't understand. Have came out of the hospital Trust and am now under a different consultant in a different trust. Also waiting for counselling with 1st appt in September. My GP has been very supportive but has limited influence in this. I don't sleep have beta blockers for palpitations and I understand may need hysterectomy. Have bowel probs so could mean endometriosis too. Should definitely add that anyone considering any hysteroscopy should not be put off by my post as this is certainly not the normal out come of this procedure. Over last 10 yrs have had 2 and no adverse outcome.

GagaJo Fri 06-Aug-21 00:28:56

I have known of someone who lost their sight following laser eye surgery. And yes, the profession closed ranks. It is a real old-boys-club, medicine. But they do talk between themselves and those who are not so skilled develop reputations. Not that the patients are aware of this. I'm afraid, I don't have any suggestions.

I would say though, that if you do end up having a hysterectomy, that it can be a minimally invasive procedure and the recovery from it can be total. I had one at 45 and was back at an active job within a month. No more terrible periods, no more mood swings and no side effects.

I wish you well and hope you get some resolution.

CafeAuLait Fri 06-Aug-21 00:38:30

Unfortunately medical procedures do carry risks, as you're aware. It seems to me like a bit part of the problem here is that you just don't know what has happened, what was removed - just a general lack of communication and explanation. I'm sorry you're going through this. Do you have a patient advocacy service you could contact who could support you to get a full explanation of what happened and what was found? This might help as a first step.

sodapop Fri 06-Aug-21 07:28:43

I agree with Cafeaulait get a complete explanation of what happened Sweetpeasue I'm sorry you are in pain and distressed by all this.

Aldom Fri 06-Aug-21 07:40:29

I'm sorry you have had a bad experience. Have you contacted PALS (Patient Advice and Liaison Service) at the hospital where you had the surgery? They will help you find answers to your questions. Best wishes.

Lincslass Fri 06-Aug-21 08:32:01

Sorry you are in pain, but yes contact PALS, they will help you get to the bottom of this. You need some answers.

Luckygirl Fri 06-Aug-21 10:03:09

Yup - they close ranks. I walk with a stick following an ortho consultant mis-diagnosis. He only noticed one fracture in my foot and after about 6 weeks he said it was healed. He missed the other fracture which was not healed, and is still not. I have a piece of heel bone loose in my foot which causes me lots of pain.
I wanted to try and convey to the staff that listening to the patient is important - I had told them endlessly that something was still wrong and I could not put weight on my foot, but they ignored me. I was not allowed to do that but it had to be in the form of a complaint, which I worded very carefully so as to understand that mistakes can be made, but I just wanted to suggest that things might have turned out better if they had not dismissed what I was saying.

Closed ranks of course - they simply denied the second fracture was there, in spite of the fact that I had been to a specialist ortho hospital who confirmed what the problem was and said that at that stage all they could offer was breaking and fusing all the bones in my foot with no guarantee that it would help.

When I have had to see the local Ortho team again they have been very dismissive to me - clearly the complaint is on the notes.

Sweetpeasue Fri 06-Aug-21 10:35:24

Thank you for your kind concern. A little more info about it. After the 1st month of pain and bleeding I knew something was very wrong so went privately to a woman gynaecologist who I'll refer to as K. She agreed to take me on NHS and get an MRI so a referral note from the operator to K. In note it said a 'False Passage' was made but no perforation. Apparently 'FalsePassage' is when hysteroscopy goes into wall of womb when inserted through cervix. K pointed it out in letter and thought I knew about it. I was shocked and with backing of GP wrote a formal complaint stating that the'Duty of Candour 'had been breached and I should have been told. Reply was that I didn't need to know! I continued under care of K with appts over 3 months and was told she didn't know why I was getting pain. I sent for my medical records. There were forgivable discrepancies but op note indicated that operator thought the fibroid initially a polyp but then realised it was fibroid and decided to remove it. Wrong, wrong wrong. It wasn't causing me pain, it had been there when I'd had procedure before and wasn't necessary to take it away yrs ago. I hadn't signed for fibroid removal. Anyway at appt in April a registrar stood in for K and mentioned something about distention medium filling fallopian tubes. She seemed to change subject when I asked if it was normal but was very open and asked if I wanted print out of previous MRI a nd Histology reports. Also arranged transvaginal ultrasound. When I read MRI report at home it said operator had told K that he hadn't took all of fibroid away. I looked up what this meant and it was what was called incomplete resection. I'd asked on every visit if there'd been any other complications and was told repeatedly, no. I've since learnt fibroid are vascular and have blood supply from myometrium (underneath endometrium). So sorry to bore anyone with these details.
I sent in another written complaint, after Pals advice, saying I felt betrayed that K hadn't told me this. I was distraught, still in pain, and completely in the dark as to what was going on, apart from I'd supposed to have had a 10 minute investigative procedure which my medical records said had lasted an hour. A record meeting about this complaint was had in which I insisted include my DH. It came to nothing and was horrible. I remained polite at all times but got nowhere. They said no information about fallopian tube business could be found and they didn't think it Gynaecological!! I was still having episodes of bleeding and not from my nose! They agreed to me having another MRI but said they didn't believe anything would be found and then I'd be passed on to pain management. I apparently didn't need to know about incomplete resection too. Id been for Transvaginal ultrasound appt where I only had abdominal ultrasound. MRI report showed I now had Adenomyosis and was given this info over the phone in a curt one minute phone call and told I'd get another appt in 6 weeks. I didn't know what Adenomyosis was exactly. I was so stunned at the way I was told and the Gynaecologist said she was in a hurry to get away. I believe she was afraid to be questioned. A few weeks later I signed at my GP surgery for the abdominal ultrasound scan report. It said K had mentioned to radiographer I'd already had transvaginal one but had found it painful so to do an abdominal one. I've never had a transvaginal one ever. Transvaginal can show up Adenomyosis. So sorry for this long winded, complicated medical saga.
Have been in touch with solicitor 4 months ago but these No Win no Fee medical negligence cases are very difficult for solicitors to prove and they were doubtful at the time about taking my case. I've learnt that they like to take on cases where pay outs are very significant--i.e. one's where working people have lost income--their cut would be larger. I have never wanted to pursue this for money. I just want justice for my agonising experience and to know what's happened. I'm a 64 Yr old woman and in all my years have never experienced this sort of behaviour from our medical profession. I can't describe my feelings adequately but a pro publica document called When Harm in the Hospital Follows you Home does it pretty well. I know of course that there are far worse things that happen to patients, harm that they have to live with for good. But psychologically this has done for me. I still don't know what, apart from a Hysterectomy, may be necessary. Present Gynaecologist wants to do Laparoscopy to investigate other organs outside womb as well as look inside uterus again.
I will not rule out persueing legal redress again as its been some time since I last looked into it.
It appears that when we get older our uterus is not considered as important, which of course, its done its job if we've had children. I feel I'm worthless.
Am now awaiting counselling to try and come to terms with it all. But how can I 'move on' when it's ongoing and I've had no justice. I've done nothing wrong!
This is my introduction to Gransnet as a poster. I joined yesterday and I'm sure I sound like a pretty miserable person. I just needed to try and get all this stuff out. I've read many different experiences of other grandsnetters over the last Yr and it has often helped to distract me from my own problems so I thank you all for that, everyone. ๐Ÿ™

Sweetpeasue Fri 06-Aug-21 13:33:39

Luckygirl so sorry for what you have been through. To be left with such disability must be devastating. I hope there is a possibility of further improvement and you've managed to overcome the very real trauma that these experiences cause. Thank you for taking the time to reply. I've posted on general health forum and not Menopause, as I didnt want to limit responses to Gynaecological problems. Thank you also to NotSpaghetti. ๐Ÿ’

Sweetpeasue Fri 06-Aug-21 23:17:52

It is late, but needed to elaborate on my first post.
The operator sent letter to my GP saying he'd took away a fibroid AND a polyp. Not so. The histology report says part of a fibroid.Operator told me it was half centimetre fibroid. To take a full hr, with the previous 'false passage' complication (see previous posts) there must have been more to it than the 'uncomplicated resection' that the operator mentioned at end of op report. Women have multiple fibroids, much larger, taken away in far less time. And they don't have pain and bleeding afterwards - - - for 10 months! Sorry - - again๐Ÿ™„---but I'm in angry mode. I don't have any way of finding out what has happened to me. I can't go to PALS - - they don't seem to want to know, I suspect this is too big. I really want anyone to post if they've experienced this sort of thing from Dr's. A 'Wall of Silence'. Very much appreciate GNs replies. And yes--we do have amazing Dr's in our NHS. Which is why my experience (please see previous posts) is so confusing and difficult to process.

HarlemShuffle Sun 08-Aug-21 16:28:18

OP, I am in a similar position. I did lose my job and my income as a result of a misdiagnosis, so PALS wouldn't touch me and I had no choice but to make a formal complaint as my only way of maybe finding out what actually happened to me.

I've just had the hospital's response, which is full of inaccuracies and things that are just not true. Their basic problem is that they cannot tell me what happened because my notes are incomplete, but they clearly don't want to admit that.

It is very difficult to mount a successful complaint against a hospital, but I wish you well in your fight.

Deedaa Sun 08-Aug-21 16:38:48

They don't just close ranks against patients. One of DD's friends (a hospital doctor) had to sue her trust after an incident that left her unable to work. The evidence the trust brought against her was incredible and in the main untrue. The judge kept telling them to settle out of court because he was going to find against them but they carried on to the bitter end and she was awarded a large sum of damages

Blossoming Sun 08-Aug-21 16:48:13

Hello Sweetpeasue, sorry to read about your horrendous experience. The Campaign Against Painful Hysteroscopy is a campaign group raising awareness of the safety flaws that exist within the processes surrounding hysteroscopy procedures for women. I think it would be worth your while to get in touch with them, Google will find their contact details for you.

Sweetpeasue Sun 08-Aug-21 21:23:40

Thankyou for the further posts on this thread. I hadn't realised, until my own experience, how much psychological harm on top of the physical harm that Dr's can cause by not owning their mistakes.
I'm very surprised by the fact that even a Dr's own Trust will not support and back one of their own employees when things go wrong Deedaa. It's truly shocking.
My heart goes out to you HarlemShuffle. You must be devastated by the hospital's response.
I have found also that notes are very often missing or incomplete. I'm so sorry and I wish you luck with your future health. I understand completely that need to know the truth. There doesn't appear to be any specific forums for patients who have suffered through Dr's mistakes or negligence. In the present time of this Pandemic when our Dr's, nurses and carers are under unprecedented strain there is little appetite for revelations of anything that paints them in a more unflattering light. Understandably so. But makes it worse for those of us that have suffered harm at their hands. It only serves as a further deep wound when friends or family rationalise our individual predicaments. As I said earlier. I Do understand that error is human. But I can't forgive the 'Gaslighting' inflicted on a patient by a group of Dr's who try to dupe you into thinking they have no idea what's happened or why you're in pain.
Thankyou Blossoming for highlighting the Campaign Against Painful Hysteroscopy. I know many women don't have painful experiences with them but I've never come across any myself. One of my sisters had a traumatic time with one as I did myself some yrs ago. That's why I was determined to hold out for a GA this time. I don't think the C. A. P. H can help as my Hysteroscopy was under a general anaesthetic. I think post menopausal women, particularly have a raw deal with these procedures as they're more likely to have stenosed cervixes. All women should be entitled to receive effective pain relief for Hysteroscopies.
Thankyou for all of your replies and kind words of support. I really do appreciate it. Joining Gransnet is my first dip into social media so this is all new to me.

CafeAuLait Mon 09-Aug-21 01:50:10

Sweetpeasue, what a horrible experience. :-( I'm sorry you have gone through that. And still are. I think it can be hard, as a woman, to be taken seriously. When we get older, I think this becomes worse. If you can deal with the stress of it, a formal complaint sounds very justified.

Sweetpeasue Mon 09-Aug-21 10:02:56

Thankyou CafeAuLait.
I've sent in 2 complaints, which I mentioned in previous posts. The first after discovering a 'false passage' was made and I hadn't been told. The second after finding out K, second consultant, had known for 5 months that the operator had not completely taken away the half centimetre fibroid, despite me asking on every appt if there had been any other complications I hadn't been told. A recorded meeting with dept head was reply to 2nd complaint, where I was told I didn't need to know(whose damn body is it?), and they didn't think it was a Gynaecological problem, despite my bleeding. I was made to feel like I was some strange phenomenon and sometimes doubted my own sanity. It's all just too crazy, I still struggle to believe its all happened. At one point K strongly suggested I have 3rd opinion. I was so relieved and over the moon that the Gynaecologist she suggested was also an important lead in clinic(trying not to give too much detail). Full of hope I arrived at appt and was told I could bring my husband in. Strange, as I'd had to be alone (due to pandemic) at all other appts. The Gynaecologist then produced a copy of my Formal Complaint, to our total confusion, and questioned me on every detail. No examination or anything apart from to say he thought my pain would resolve with time. It was like an interrogation. I've since learned that this should not have happened.

Sorry once more for the rant. I just thought by posting my experience there may be others out there who've had, or are having, a similar bad experience. Thankyou for all of your posts. If any others are going through anything like this and couldn't bring themselves to share it, I want you to know you are not alone and you've my heartfelt sympathy.

GillT57 Mon 09-Aug-21 11:55:30

Your case sound very similar to the unfortunate women who underwent mesh bladder support surgery and were not believed when they were left in agony, and effectively disabled. They did finally get recognition and admissions of responsibility, so perhaps your best way is with the hysteroscopy group? One person is very small against a massive institution.

User7777 Mon 09-Aug-21 13:26:12

Sweetpeasue... I am so sad for you, and you must be suffering. As long as they get consent, after that I dont feel they care. I have turned down many ops, out of distrust for the health service. No one seems accountable in the present. Sending you a hug....

Visgir1 Mon 09-Aug-21 13:59:25

So sorry about your experience.
Contact Hospital CEO with the facts.
But.. Because you signed a consent form, not sure how you stand?
The CEO should be able to sort out some form of answer for you.
Best of luck and hope this is resolved soon.
Best wishes to you.

welbeck Mon 09-Aug-21 14:08:14

have you approached a law firm that specialises in medical negligence, there are several n london, and probably other cities too.

luluaugust Mon 09-Aug-21 14:40:16

I am so sorry to read you are in this very difficult situation. I have had a few run ins with the NHS myself although not quite on this scale and I do appreciate how difficult the psychological side of things can be to deal with as much as the physical stuff and how even the loveliest family and friends don't always realise how difficult it can be mentally. I hope the physical side is sorted out soon and wish you all the best.

Deedaa Mon 09-Aug-21 19:40:13

I knew someone who had the mesh operation for a prolapse. All went horribly wrong and she's still not completely over it some years later. She consulted a solicitor but was told that the surgeon had used the technique that was accepted at the time. The hospital retrained the surgeon and my friend's consultant had to arrange appointments for days when the surgeon wasn't working because my friend certainly didn't want to see her again.

Sweetpeasue Mon 09-Aug-21 19:57:18

Thankyou all for your words of support and your wishes for my recovery. It is heartening to know that many of you have taken the time to care and offer suggestions.
I wouldn't place myself in the same category as those poor souls who've had mesh bladder support surgery - - but how is it that we women are expected to put up with this sort of stuff in the field of Gynaecology?
At moment waiting for MRI results at appt at end of this month. If Adenomyosis still shown I'll take advice from this new Dr who I've started seeing in different hospital Trust. It does feel, even now, a bit like walking on eggshells. He doesn't want to talk about previous Dr's and problems under them. I knew this would be the case no matter how further afield I went for treatment. If I keep on having bleeds something will have to be done. Some small things have helped - - and they can be noticed in the blackest of moods. In the beginning of summer 2 Robins nested in my back garden and I fed them while they brought up their young. Chocolate! Reading Gransnet (when I wasn't googling medical stuff ๐Ÿ™„) Thankyou again GNs.

Sweetpeasue Sun 15-Aug-21 18:53:36

And now, as of yesterday, bleeding again. I'm so scared of what is ahead. Sorry if its TMI.And I sounded a right Pollyanna in my last post! Chocolate and Robins! Before GN never publicly posted before, so just getting used to what I should and shouldn't put. See Consultant for MRI results in another week so will find out soon.
Thankyou Visgirl. I signed consent form for biopsy and possible Polypectomy. Not fibroid removal which I believe is Myomectomy. He messed that up and left me like this.
Anyone out there with problems with Dr's deliberately concealing mistakes have my heartfelt sympathy.