After seeing a gynaecologist and having a pelvic exam recently, I have been feeling miserable for a few days, and now I am wondering if I should consider trying for another doctor, or if that would be a mistake. I want to know if what happened is acceptable, or if I am right in feeling that the gynae concerned is bad news, and I should look elsewhere.
The gynae did not have my MRI or ultrasound report (I have a large 9cm ovarian cyst, benign), but luckily I had brought copies. We talked and then he asked to examine me. When I was in the stirrups, he continued to chat and inserted a probe or gynae tool of some sort into me without giving me warning or explaining what he was about to do. We were looking at a screen that looked like an ultrasound as he pushed it in all different directions, and he talked me through what we were looking at, which was quite helpful, but it was only afterwards that I realised that he didn't say what kind of exam it was. Maybe it was a vaginal ultrasound? I felt a bit tearful during the exam but was doing my best to control it. It was a little painful when he pushed it in far, but not that bad. Pain wasn't really the issue, it was something else. I found the experience very disempowering and upsetting, which I was surprised by, as I have no trouble at all with smear tests. I think it may be because my smears have always been done by women (usually nurses) who show kindness and respect, and they always let you know what they're about to do. I was shaking and felt weak when I left the hospital, I wanted to cry, I felt overwhelmed. And then I had a bout of diarrhea, all a nervous response I suppose.
I think my distress was caused also, in equal part by the consultation, as a number of things alarmed me. He said that I may lose one of my ovaries; I asked how likely, and he said 60/40. I said I would prefer to keep it if possible and that I was worried that it might affect my hormonal balance if I lose one, he said 'no, it won't'. I said I wanted to preserve my fertility (I don't have children) and he said 'well if you do have endometriosis, getting pregnant will be very difficult anyway'. That was his answer, which I was very surprised about. I was expecting something along the lines of 'we'll do all we can' or maybe 'it may not be possible to keep the ovary, but we only remove organs with your consent and I'll do my best to not damage your ability to conceive'. I didn't seem to matter to him, and it seemed a foregone conclusion that i can't have kids now; I did not see him make a note of my wish to preserve my fertility. There were other things: my periods have recently become irregular/different, so I asked if there was a test that could show if I was perimenopausal, and he said 'no, there isn't'. I have since looked it up, and there is a test for this. I felt that he was unwilling to give information or answer questions properly, and there was no sense of us coming to a decision jointly. I left being told that I would have laparoscopic surgery that may become a laparotomy, that he would remove the cyst and look for endo, and that I may need more surgery later if endo is found. Since, I have been quite angry with myself for not asking the right questions or insisting on certain things, like a record being made regarding my wish to stay fertile, if possible. When I asked about recovery times, he seemed a bit annoyed and slightly incredulous that I was even asking. I think it's quite reasonable to want to know how long you'll be unable to work for, and if you'll need need care.
I will get an appointment quite soon, and I just don't know if it's right to have this person operate on me. My instincts say no, but he is the head of the team at that hospital and I think he is supposed to be an expert in endometriosis, so perhaps that is more important. I think I don't respond well to that power differential between doctor and patient when the doctor assumes total control and is not dismissive about your thoughts and questions; it's horrible to feel that you have no choice. It is my body, after all. I'd really appreciate some thoughts on whether my concerns about him are valid, or if this is just what's to be expected, or even if you think I'm being too sensitive. Perhaps it's more important to have a well qualified surgeon even if his manner and communication are poor?
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mountaincat
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Oh my goodness, what a horrendous experience. Bless you, I think I would have been crying. He should have explained what was going on and I think having someone who communicates with you is vitally important. I would not agree that his expertise should make up for this.
If you have an endometrioma, then it's likely that you have fairly extensive endo elsewhere. Often there's intestinal involvement. I was messed about by two gynaecologists, one of whom claimed to be an endo specialist. He wasn't. I ended up seeing a real specialist who skilfully removed the three endometriomas that I had. He saved my ovaries. The other gynaecologists said I would definitely lose them.
Have you looked at the BSGE list to see if there is a specialist near you? I found mine on there then went onto the Facebook group endometropolis to ask for the advice of other ladies who had had experience of him. I haven't looked back. He was amazing. Please private message me if you're in the north. But either way, it's critical that you are seen by a skilled endometriosis specialist who can expertly excise whatever is there. Don't let this comsultant being the lead in a general gynae unit or being a self proclaimed specialist mislead you. He could do more harm than good.
Thanks for being understanding, I need a bit of that at the moment!
This happened at my local BSGE accredited endometriosis centre; he's the medical director there. I won't give him name here as I know it's not within the rules of this forum. Would you say that this isn't what you'd normally expect at a specialist centre? I was expecting a more sympathetic approach.
Thanks for the tip about endometropolis, maybe someone on there has had treatment with him and can discuss with me. I'll get on there and see..
That's so worrying that a specialist would make you feel like this, I'm so sorry. I would expect a more sympathetic approach from anyone in the medical professional. It's very sad that you have experienced this. I would be tempted to move, just because your gut feeling about him is not right. Good luck!! X
Hi I think how you have been treated is absolutely awful . Personally I would contact the hospital and request to see someone else. I myself have done so as the doctor I saw sounds similar .
I am really sorry you had such a negative experience. It sounds like he thought you knew it would be a TV ultrasound - did your letters from the centre not tell say you would be having this? You should also have been offered a chaperone, so you could have a female member of staff in the room with you while it was being done.
It might be a good idea at this point to contact PALS at the hospital where you were seen and talk your experience through with them, as they may be able to get you an appointment with someone else so you can talk through the scan and ask more questions.
Re the tests for perimenopause - it's my understanding that although there are hormone tests, they are very unreliable and don't generally give a definitive yes/no answer, especially not for perimenopause.
No, the letter didn't mention any specific scans, no mention at all of any types of examination. There was a female nurse present in the consulting room and she came through into the examination room also. She only spoke when the consultant was not present.
That's interesting about the tests for menopause. I think it was a reasonable question though, and he could perhaps have said that there is a test, but it isn't conclusive. I would have been able to understand that, and wouldn't have come away with the gnawing feeling that the doctor is fobbing me off/isn't being straight with me.
I am the kind of patient who prefers to be informed, I like to know what's going on and what could happen, even if the news is bad. I know some people have different needs, and they don't want details that might worry them. Is there a way of getting it across to doctors that you're the type that is actually reassured by information and getting your questions answered honestly?
If you feel uncomfortable with the consultant then it is better to change. You need to trust the consultant 100% to be operated on. Excellent surgical does not equal excellence bedside manner or vice versa. I am a dentist so I know plenty of dentists who are popular with patients but not clinically that great.
I prefer to see a surgeon will excellent clinical skills. However you need to trust the surgeon for it to work.
I now have a surgery date, and got the letter back to my GP.
The letter says my cyst is an endemetrioma. This is interesting as it has not been referred to in that way before, so I suppose that confirms that it is endo. The letter also mentions the urgency of surgery*, which makes me feel that it would be unwise now to try switching. If time wasn't an issue, I would try it. Also, i got no responses for recommendations on endometropolis. I would prefer to find a gynae who can listen and share what he knows, but maybe it's better to just get this thing removed, and afterwards I can see if there's another way.
I called the Endo UK hotline and spoke to a nice woman there, and I've decided to contact my gynae and ask for confirmation on key points that I am most concerned about. I already spoke to the secretary and she gave me his email. I will draft an email today; my op is in 3 weeks so I hope he responds.
Maybe after surgery I will contact PALS and explain my concerns about him. I don't know if this will have any effect, but maybe sometimes it needs to be reiterated to gynaecologists that inserting things into a patient's body is invasive, and a simple 'I'm going to do X now, is that OK?' before would make a lot of difference.
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*The letter says:
'she has a large 9.5cm right ovarian endometrioma filling the Pouch of Douglas and distorting the bladder neck.'
'she obviously needs to have an urgent laparoscopic ovarian cystectomy if at all possible and I have explained to her there is a small risk of oophorectomy and that we may not be able to do this with keyhole surgery. I think it would be sensible for her to have a full oral bowel prep the day before as it is likely to be adherent to the bowel, but there is no evidence of endometriosis in the bowel on the MRI scan'
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