Doctors not telling full information?

[Hannah818]

Is this happening to anyone else? I don't know what to do. When I go for gynae appointment the gynae I see or someone from their team doesn't give me full results or full explanation. It's a bsge centre.

For example found out I had ovaries attached to bowel because of endometriosis at last appointment. However they did not tell me I also had uterine adenomysis, I don't even know how to spell this. Just read that I had it on the nhs app. Its within the same results.

I've been misdiagnosed for two years . Been told it was abscess issues whilst the endometriosis has been spreading further inside and now more organs involved.

The only reason now know its endometriosis is because I've been pushing for MRI for last few months.

Waiting for a surgery date and hoping things don't get worse whilst waiting. I've been given no advice on hormone medicines etc . I rang the centre once to find out if I could speak to endometriosis nurse , was told one was off sick the other too busy.

My gyna consultant is in a rush everytime I get appointment or I don't see them and it's someone from the 'team' who says they don't have the information but the consultant will.

Feel like I've been going round in circles for two years with this thing spreading inside me .

[TennisAM]

Hello, I'm so sorry to hear this, it sounds like a very stressful experience.

They do not sound like they are providing effective care or information to you.

I have been at a bsge endometriosis centre where they regularly fobbed me off and I had to fight for many things. I decided to leave there and go to another centre.

I'm glad I did because I realised they are bad at their job, both care and also surgery. I did not want to put myself at risk. When surgery is performed by a surgeon that isn't good enough, it then sets the patient back even further.

This happened to me once, where my bsge surgeon missed a lot of endometriosis (December2021). Then I went to other endo centres for care (June 2022, October 2022 and October 2023) and they all fobbed me off. They were very naive, saying that endometriosis isn't causing my pain. Some of them stated that I'd been operated on by a BSGE specialist, therefore, it can't be endometriosis causing it. Of course, endometriosis can be missed and not l surgeons are good at their job, but these doctors didnt think that. This is despite my symptoms being the same for 5 years and not going away as a result of the December 2021 operation.

Please note in January 2024 I had surgery with a competent bsge endo surgeon who found severe endometriosis disease. These previous bsge "specialists" were totally wrong. Having surgery with the wrong specialist is one of the worst things that can happen, it delayed my treatment and left me in pain for 2 years longer than I should have been.

Could you please send me a private message with the name of your consultant/endo centre? Thanks

I hope you get some proper help soon.

[Jade2006 in reply to TennisAM]

That’s awful care , where was this ?

You put your trust in them and we don’t get the care we need and deserve, pain management try and fob me off with crap pain meds and don’t listen x

[Hannah818 in reply to TennisAM]

That sounds awful, sorry it took them so long to reach proper diagnosis, was it easy to change bsge centre? There is another bsge centre in same health Trust nearish me ,but I read on Internet if I ask for a change I will go right ba k to square one on waiting list ,

[TennisAM in reply to Hannah818]

Hey, sorry, I probably should've said I've had a diagnosis of endometriosis since 2012. These bsge "experts" told me endo wasn't causing my pain despite having had endo removed via surgery three times before the appointments with them. This is why I said it's very important to have a good bsge specialist look after you. Some of them are simply pretending to be experts. In January 2024 I was diagnosed with severe endometriosis for a second time after being fobbed off by 3 bsge endo "specialists".

It's not just the waiting list that's the issue. If a new referral is made then the process starts again from step one. You would need to ask your GP to refer you for a second opinion at another centre. The second opinion part is very important so the current endo centre doesn't discharge you. Alongside writing second opinion on the form you can also specify a specific consultant by name if you wish.

[Hannah818 in reply to TennisAM]

Thank you , so sorry to hear about your experiences being fobbed off, its so disheartening when it happens. A few freinds have advised me to complain but I don't want to as the doctor will be performing surgery on me in next few months. Also feel worried about asking for another doctor as it will most likely set back surgery date , which has already been delayed.

I'm kind of praying for best outcome at the moment and just arming myself with lots of info so that I can make sure I've had all the tests needed etc and asked everything relevant , it's hard and I hate feeling like I'm being perceived as an awkward patient ,but I'd rather be awkward than regret later

[TennisAM in reply to Hannah818]

I definitely agree, do not complain about them as they may change their behaviour towards you and you need them to be their best in the op.

Have you put in a Subject Access Request for all of your medical records since you started seeing them at the endo centre? here should be a page explaining this on their website. Then you'll have all the scan copies, all the handwritten notes etc etc. You will know everything they've written down. It could make you feel more secure.

Also have you asked them if they will excise or use ablation? Ablation is useless, they just burn the top, like the top of a creme brulee, the cream underneath is untouched. Therefore will continue to grow and cause pain.

Do you know others who have had ops with your surgeon? Are there reviews?

[Hannah818 in reply to TennisAM]

Hi, thank you for your advice. I put in access request last week for scan notes , wish I'd done it earlier. Apparently this health Trust has huge backlog so could take months. I can't find any reviews with this surgeon but they are well known in their field

I think the op I am having is classed as excision (although not totally sure) as it involves taking out ovaries tubes uterus and possible bowel shave

[CrazyCat1996]

I'm in the exact same position now, not sure I can help but it's nice to relate to someone else.

I'd been in and out of the doctors and I felt they kept fobbing me off too, saying it was just the affects of coming off the coil. Went to A&E after having a period for 2 months for them to say it's nothing serious and to take some tablets to stop the bleeding. Eventually I went private as I was sick to death of waiting for a referral. They told me they couldn't do anything unless I had an MRI, 4/5 months later I pushed for the MRI which found out I had Endo. I was told 'suspected Endo' on a letter on the NHS app and no one told me what it was or how servere it was, even trying to speak to someone I was being directed here there and everywhere!

Finally after 2 and a half months got a appointment and when I sat down she went 'how can I help you'... well for a start she didn't have the MRI results!!! So pointless appointment.

I was told 6 months before I had POCs and a cervix fibroid which this gyny told me I hadn't got... so I'm very confused as to how severe my Endo is or if I had POCs/fibroids at all, as to be honest... I didn't believe they gyny.

Im managing it currently and will head back when I start feeling like I can't cope.

But I feel like everywhere is the same in regards to nurses not fully understanding the condition.

I hope you get it all sorted x

[Hannah818 in reply to CrazyCat1996]

That's so confusing, I hope you get some clear answers soon, it's so draining having to ask and search all the time and repeating appointments with doctors who don't fully understand or who haven't got time to talk things through. Keep on advocating for yourself- you know your body best

Best wishes xx

[Thistlegirl49]

Hi,

Sounds stressful.

2 years is actually quick to be diagnosed, the average is 8 years, even now in 2024! Some wait 18 months just for an MRI unless you go private. Current wait time in my area are 35 weeks for ‘routine’ MRIs! 🤦‍♀️

I wish you the best as laparoscopic surgery is the only definitive way to obtain an accurate diagnosis, However, it sounds like the team have a good grasp of what may be going on via MRI/CT. results which is reassuring.

If you feel ill informed by the consultant/team you are entitled to request your medical notes via your GP or localised NHS service… just a thought.

Hope you get answers soon.

[Hannah818 in reply to Thistlegirl49]

Thank you, yes I think I've had endo for much longer than two years , it's just been more acute for 2 yrs with repeated hospitalisation and iv drips. Glad I pushed for mri and one gynae recently sent for ultrasound which helped alot with clarifying what was happening and hopefully will help plan surgery.

I've requested scan notes , the health Trust has a huge backlog so might be long time before I get. Wish I'd asked sooner lol.

I'm so glad have found information on these forums which have helped me ask for tests and notes , as without this , I'd still be in dark and wasting nhs time and money by taking up a bed every few months and iv drip!

Feel like making some progress

Hope everyone out there gets the help they need xxx