Had an awful experience at my gynaecology appointment yesterday, and just feel really upset and deflated about it.
I was referred to the gynaecologist under the 2 week wait referral because ultrasound picked up an endometrioma, and my bloods came back with super high CA125.
Gynaecologist was awful. Refused to treat the endometrioma because I don't have children, and because it's "painless". Insisted I should be on contraception, when I've gone through every type of contraception four times, and it's done nothing to help me. Explained I'd had two miscarriages this year, and was told "the first ones never stick"...
Repeatedly spoke over me, wouldn't discuss anything other than the pill. Asked about a laparoscopy, excision, or chemical menopause as options, and she just laughed and said I need to have children first.
She also completely rubbished the cancer risk, told me I shouldn't have been referred under the two week wait because I'm blocking appointments for those who need them, and was just really dismissive and horrible about the pain and heavy bleeding I've had since I was 13.
I ended up walking out of the appointment because I was just too upset and distressed to continue (I'm autistic and have a huge phobia of anything medical).
Are all gynaecologists like this? It's really knocked my confidence and trust now, and I'm at a loss on what to do now. I don't even know if I'll be offered another appointment or be discharged back to my GP.
Can I request a second opinion or asked for my treatment to be moved to another Gynaecology clinic? If so, who from?
I was so hopeful and feeling positive that things were moving forward, and I just feel like that appointment was a waste of time because the gynaecologist refused to treat me for my endometrioma.
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GrouchoSparx
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I am so sorry to hear you have been through this. You were treated appallingly. I would complain to your local PALS and ask to be transferred to a different consultant. I would also ask if they can make reasonable adjustments for your Autism. Keep us updated x
Hello no they aren’t all like this you will be glad to hear & sorry to hear you had a terrible appointment. We put high hopes on our first appointment and praying that we can get answers and it’s so disappointing when we get nowhere.
You could complain to PALS at your local hospital, ask for a referral to another gynaecologist as soon as possible too.
I agree with all of the above about PALs and you can go back to your gp and explain plus tell them you want to be referred to another gynaecologist and ask for an endometriosis specialist where hopefully they are more understanding. That’s so terrible and so sorry you had to go through that but no they are not all like that at all I’ve had good experiences with nice endo specialists and gynaecologists so they are out there you just saw an awful one. I’m sending big hugs xx
Not suprised because I was told I was 1000 percent no chance of having endometriosis and she reluctantly gave me a laproscopy a year later.... oh low and behold 16 years of pain from my teens I woke up to be told by the same woman who was 1000 percent sure I don't have endometriosis that I do havebit and it couldn't all be removed so now ve got to see a speashilaist and have another op. Don't let her fob u off and the fact your bloods are suggestive of cancer defo stand your ground. I also had 3 nodules one which a biopsy was took. Thankfully results were no endometric cancer after 6 weeks waiting. Xx
Hi, this is completely unacceptable, I am sorry you had to go through this. You should definitely ask to see someone else. Could you take someone with you to the next appointment? Let us know how you get on xx
I'm so very sorry you were treated so badly, no they aren't all like this but some are I had a female gynecologist and she was horrendous. But the male ones were lovely. After her I asked for a second opinion, and he was just marvelous, listened to what I had to say and was brilliant. I would put in a complaint to pals and ask your doctor to put you in for a second opinion. May I ask how high was your ca125 results. Sending you a big hug too x 🤗 oh and I understand I have a phobia in regards to anything medical x
My CA125 was 63 U/mL, which my GP was a bit worried about as she said it was twice what it should be. I have a family history of ovarian cancer too, which is adding to the worry
Hi my ca125, was at 55, so I got fast tracked. But one radiology consultant and three gynecologist's told me not to worry. It can be raised by periods, cysts, endometriosis and adenomyosis oh and fibroids too I believe, I have all of those, I was told it has to be in it's thousands to be a sign of cancer, I hope this reassures you a little, but I can understand your concerns, especially as you have a family history of cancer. I was told straight away by the person who rang me at the doctor's it can be a sign of cancer, and at least you're not going to wait at least a year for gynecology. Then went on to say it could be other things. Thankfully I was booked in for my ultrasound at the time a week later. But a scary year it was. Hope this helps you and you get the care you deserve, again I send you a big hug too x🤗
Just on the back of this I know a girl with stage 3 ovarian cancer and her readings were never higher than 156. Doctors have to send you for an urgent referral with raised ca125 because it doesn’t have to be in the 1000’s.
But yes all health issues related to endo etc can raise the levels. I hope everything is ok and I would try not to worry. I just wanted to clarify that levels don’t need to be in the 1000’s x
Thank you for that, I do feel less anxious now, especially as when the blood test was done, I was in the second half of my hormone cycle, which is when my endo symptoms flare. I just wish the gynaecologist had listened though, as I'd have worried a lot less!
I’m really angry to hear that you were traumatised by this Dr who treated you appallingly.
You have a right to complain. Put everything in an email to PALS and ask for a reasonable adjustment regarding your neurodiversity, Also: a second opinion with a BGSE accredited Endometriosis Specialist Gynecologist. These have experience and are skilled surgeons who are trained to excise the disease as this is shown to be better than ablation (or burning it off with a laser).
Also, you can ask to see a Medical Psychologist who will help support you through recovering from this appointment and medical trauma in general. They can provide a safe space for you, about your health related struggles, to find a way forwards.
Similar happened to me. I have had support for over a year now and it’s made so much of a difference to my mental health and well-being. The GP prescribed me diazepam to take for all medical appointments and it helps to calm me down.
You deserve much better treatment and to be spoken to with respect and dignity. It is outrageous what happened in your appointment and 💯 unacceptable, totally inappropriate.
You have got this. We are here if you need to talk about it all. Do take good care of yourself and know that you’re not alone in your experience’s x x x
Thank you for the suggestion about the medical psychologist, I'm going to look into that as I think it would really help. I do use herbal remedies like Rescue Remedy, and I do try and do some breathing exercises, but sometimes the fear is just too strong, so I'll maybe ask my GP about anything I would be able to take to help me stay calm.
I'm also going to do some research into the endometriosis specialist, and then see if my GP can give me a referral to the specific specialist.
I believe, from my experience, that more likely to get support from an email to PALS detailing what happened. You can see the GP, see how that goes and then decide, if you want.
I've emailed PALS this morning, so will see what they come back with. I'm due to see my GP soon anyway to sort out my prescription so will probably have a chat about what happened with the gynaecologist then if there's time.
I hear a lot of such stories, there are a number who are terrible, one woman was told “well I could rip your guts out!”. These people should not get a pay rise. Turn to something positive. Endometriosis cancer is very rare and ca125 is always high with endometriosis. Many people get relief from changing your diet and lifestyle. Research has shown that 80% of endo sufferers get some relief by avoiding wheat and gluten from the diet. This can be very hard to do at first but can have some dramatic results. Be aware that wheat is hidden in many foods and it does not need much to cause pain and discomfort. You could always get help from a nutritional therapist who knows all about endometriosis like Dian Shepperson Mills who wrote “Endometriosis: a key to healing and fertility through nutrition “ https;//endometriosis.co.uk/
This is awful but also quite common unfortunately. I am so sorry you have been treated this way. This gynae clearly knows nothing about endometriosis and is fobbing you off with the pill which will only mask symptoms and not treat them. She has no right to speak to you like this and I would definitely consider making a complaint. Ask for another gynae who specialises in endo. I promise they aren’t all like this. Your symptoms sound like endo to me and I’m no doctor, keep pushing for the support. Don’t give up, sending hugs 🤗
Forgot to say, I fought with my GP for years to refer me and the first gynae I saw was appalling so I asked to change hospital and ended up with an amazing gynae who immediately referred me for a laparoscopy. It was such a relief to be finally listened to and supported. You will get there, it’s just unfortunate that it has to be a fight 😢
Thank you to everyone for all of your suggestions. After reading them all this morning, I've emailed PALS at the hospital, and PALS have agreed to look into how I was treated, and look at any support the hospital will be able to give me for my autism and phobia in the future. I also now have details on how to make an executive complaint to the Director of the hospital, and I am considering this approach too.
I'm also going to do some research into the other gynaecology clinics in the area and ask if I can be moved to a different one, chat with my GP about the experience when I see her for an appointment in a couple of weeks, and look into seeing an endometriosis specialist.
I’m so glad you have contacted pals. This treatment you received is completely disgraceful and this gynaecologist should really be ashamed of themselves. I sometimes wonder how these people end up in these job roles where they are supposed to help people! It’s baffling. I hope you get some answers and manage to move forward with another specialist x
Hi everyone, I just wanted to give you a little update on my complaint, as I've had a response today.
I've had a full apology from the hospital, with full acknowledgement that how I was treated was wrong. My complaint has also been forwarded to the Clinical Director of Women's and Children's Services, as well as the gynaecology team, and the individual gynaecologist who "treated" me for future learning and improvements.
The Patient Advice Liaison Service are going to set up an appointment for me with a different gynaecologist, so that I can have a second opinion.
I am feeling positive, like it's a step forward, but also a little worried that I'm just going to be treated the same way because whoever I will be seen by for the second opinion is part of the same gynacology team. I'm also a bit worried of being treated a bit coldly because I made a complaint. I know clinicians aren't meant to treat you differently because you complained, but I just have this nagging feeling that the same thing is going to happen all over again.
I think I'm going to ask PALS to set up the second opinion appointment, then if it is the same, ask to be discharged back to my GP so I can be referred elsewhere.
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