I'm not happy with what my surgeon is planning... What can I do?

[Sick-and-Tired]

Hi, I have my first diagnostic laparoscopy booked in for 15th November.

I spoke to a girl who had ablation for her first surgery and warned me that the scar tissue she's been left with has really impacted her health, so I need to ask to excision.

The whole way along the process I have asked what method they would use for removal, but everyone kept getting vague and said I would get a chance to ask the surgeon at the pre-op assessment, at the assessment they said I would be able up find out when I got my appointment etc etc.

To cut a long story short, I managed to speak to the surgeon on the phone the other night who basically laughed and said my friend just doesn't understand and that the scar tissue isn't caused by the ablation. I said I wanted excision and she said that she's not an endometriosis specialist so she will be ablating, but if it's extensive then she'll just take photos and sew me back up and send me elsewhere.

After the phone call I googled it and have seen lots of case studies of people saying to avoid ablation, and even a statement by North Bristol NHS Trust saying there is no place for ablation in the treatment of endometriosis.

I feel like I'm not being given any choice, and it's either this or not find out if I have endometriosis.

Does anyone have any idea what I should do? I'm very aware that my surgery date is fast approaching and am very stressed.

Thanks for your help xx

[Christin_a]

Hello

Do you know if your surgeon has a specialist interest in endometriosis? This is different to being a specialist. You can normally find out by googling their name and finding out what their areas of interest are. But it is a requirement that they have a specialist interest in endo if they are doing surgery on someone suspected of having endo.

As to which is better it's down to the skill level of the person doing the surgery. And some areas are more risky than others.

Be aware that there's 2 types of ablation. So where the Bristol Trust have said it has no place check which they are referring to. Endometriosis ablation a way of removing the endometriosis cells and endometrial ablation which is a way of reducing the amount endometrial lining inside of the womb.

[Christin_a in reply to Christin_a]

Also if you really aren't comfortable with this after finding out some more as I've suggested above, you have a right to informed consent so if you are not happy now you know more you can pull out. You are also entitled to a second opinion on the NHS if you are really uncomfortable with the situation. If the surgeon has no specialist interest in endo then you shouldn't have been referred to them in the first place as this is a requirement per the NHS NICE guidelines for diagnosising endometriosis.

[Sick-and-Tired in reply to Christin_a]

Hi, sorry for the delay in responding. Thanks for the information.

It's not listed in her specialist interests! They are:

Early Pregnancy ultrasound

Emergency Gynaecology

Ambulatory gynaecology including outpatient hysteroscopy

Labour ward practice

General Obstetrics and Gynaecology

Thanks so much for your help... I'm not quite sure how, but I'm going to see if i can get someone else to do it.

Thanks!

[Christin_a in reply to Sick-and-Tired]

Hello.

She shouldn't be doing the surgery then. If you contact the PALs team of the hospital and tell them that you have learnt that only a surgeon with a specialist interest in endometriosis should be doing surgery as per the NHS guidelines on diagnosising endometriosis. And state that you want the surgery to be done by someone who has this specialist interest.

They are a middle point on the hospital who listen to complaints and speak to the teams required to get a resolution for you. I've used them once or twice and found them nice and useful and pleasant.

[Sick-and-Tired in reply to Christin_a]

Amazing! Thank you SO much! Honestly, one of the most stressful things is that I have no point of contact about my surgery (even finding out who was carrying out the laparoscopy has been a nightmare!)

I really can't thank you enough!

[Hopeful1s]

Hi, I had ablation in August using a new piece of equipment called plasma jet, and have healed well. My first 2 periods were the same as before but third one now has been better (it didn't floor me). I went to a specialist endometriosis centre and my surgeon is particularly skilled in this. My main aim of surgery was to restore anatomy and preserve fertility which meant ablation was the most suitable surgery for me.

[Sick-and-Tired in reply to Hopeful1s]

Were you able to go to a specialist endometriosis centre on the NHS before a diagnostic laparoscopy?

I had asked to go to a specialist centre but they said I'm not diagnosed with em

Endometriosis, so they wouldn't do it!

[Hopeful1s in reply to Sick-and-Tired]

That's rubbish, I had my MRI at the endometriosis centre because my GP was great, she said there was enough information from my ultrasound to point it to being endo, and we have been trying to get BFP for last 2 yrs. The ultrasound was enough to refer me and she let me choose who to be referred to, she contacted 3 clinics on my behalf and I went to the one that gave me the earliest appointment. I used the endometriosis UK website to find specialist centres near me. You need to be firm with your GP, you want to be in the best care for your laparoscopy.

[Lushbookkitty]

I’m sorry you’re going through this. Honestly I would say go with your gut and your research here; excision is proven better. The surgeon has admitted not being a specialist, as well as performing an inferior treatment, they may even miss the endo altogether. My endo was missed at the first surgery by a team planning ablation, but was found this week by North Bristol. I was referred here for a second opinion on the nhs.

I know waiting for excision will mean a delay in diagnosis, but not waiting may mean an unnecessary surgery, like I had. If you’re on Facebook, there’s an amazing group called Nancy’s Nook, it’s not a support group, but a library of evidence based information which might help you decide. Good luck xx

[Sick-and-Tired in reply to Lushbookkitty]

Thanks so much, I'll check it Nancy's nook.

I'm so sorry you've been through that, but glad you've finally got answers!

I'm going to see if they can refer me elsewhere... Thanks for your reassurance that I'm not being insane to be concerned! Xxx

[_EndoWarrior_]

I also had ablation in 2000, and was also put on the Combined Contraceptive Pill. Ablation does not remove all the Endo and it will carry on growing and spreading.

17 years later I was diagnosed with Stage 4 Deep Infiltrating Endometriosis.

Excision by a highly experienced surgeon with ‘minimally invasive excision’ training is the best treatment.

reddit.com/r/Endo/comments/...

Either way I do hope your Endometriosis does not recur.

[GrittyReads]

I believe you have a right to 'insist' on having a purely diagnostic laparoscopy.

I would check this out with Endo UK, or your local 'Endo UK Support Group'.

Ask Endo UK if there is a group local to you - as the ordinary women in that will know a lot about the local surgeons. I had partial removal back in my 50s (just over 10 years ago) and the pain was all back and much worse within a year, or less.

[Sick-and-Tired in reply to GrittyReads]

Thanks, I'll try to find my local group. I'm really sorry that your pain came back even worse.

I really appreciate your help and advice!