Referral consultant operating on bowel/ur... - Endometriosis UK

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Referral consultant operating on bowel/ureter and possible left ovary removal... Should I be concerned?

dinzel profile image
13 Replies

I am currently on the waiting list for my first laparoscopy following diagnosis of endometriosos via MRI.

The gynaecological consultant has an interest in endometriosis. Her clinic is described as a 'one stop shop'. She attempts to treat issues quickly and with minimally invasive options. I appreciate that may work for other conditions, but I feel that this isn't the right approach to endometriosis.

The MRI has shown both ovaries have endometriomas. The left side is worse than the right, but the right is strangely small. There are also lesions on the right uterosacral ligament which seems to be touching the ureter and bowel on that side. Obviously there could be more lesions but they won't know about those until they do the laparoscopy.

The consultant has said she will try to save my left ovary and remove the lesions on the ligament, ureter and bowel. She has said she may end up having to cut into the bowel so I have been given picolax to clear the bowel. She will be performing ablation, not excision.

So my question is, should a consultant with an interest in endometriosis really be operating on my bowel/ureter and should she have already told me that she may just remove the left ovary?

From the reading I've been doing, she shouldn't be attempting any bowel or ureter surgery without a specialist being present for those areas.

Can anyone suggest what I need to ask the consultant or who I can ask for a second opinion?

I am under the NHS for care and cannot afford to go private due to personal circumstances.

I am really at a loss as I know I need to get this sorted but I want to make sure that I get the right treatment from the get go. I am 36 years old and have been suffering with this condition and related immune issues since I was 11 or 12 years old.

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dinzel
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13 Replies
Christin_a profile image
Christin_a

In short no a gynecologist shouldn't be doing anything like cutting into the bowel. Only a bowel surgeon should be doing this.

It sounds like you need to be seen by a bsge centre and gynecologist, you can Google this to find your closest centre and the listed gynecologist at that centre. Depending where in the UK you are either your gp can refer you or your gynecologist needs to.

dinzel profile image
dinzel in reply toChristin_a

Thank you for your reply. This is what I thought from the research I've been doing. The consultant did say if the bowel/ureter damage is too extensive she will just leave it, but she will then refer me to a specialist. But in my mind that means she will attempt to do some work on those areas herself which I'm not happy with. I've been looking for my local BSGE centre and it's not too far away, so if I'm still unhappy when I next speak to the consultant (I'm going to call her on Monday) I will ask about referral.

Fedupnurse profile image
Fedupnurse

Hi there,

Just wanted to give you a bit of peace of mind. If a gynaecologist has told you that there could be a chance of surgery on your bowel they would always get a colorectal surgeon involved to assist with your surgery and would do that part of the operation however gynaecologist do have experience working with the bowel as part of their training.

I’m a scrub nurse who works in colorectal surgery and we regularly have joint cases with gynaecology.

Hope this helps

dinzel profile image
dinzel in reply toFedupnurse

Thank you for your kind reply. It's good to hear from someone in the 'industry', for want of a better word! She has specifically said she will refer me to a specialist if she can't fix things herself, but that could mean that she will attempt to do more than she should, so I'm really worried about that.

Fedupnurse profile image
Fedupnurse in reply todinzel

You can always speak to your doctor and express your concerns but If you’re having doubts in your doctors ability they might not be the right doctor for you, but just know, they would never put you at risk, the whole team who are involved in your case are looking out for your welfare!

Hope you find the answers your after to ease the anxiousness

tiger-cub profile image
tiger-cub

Yes it seems you are having a complicated surgery . I would definitely recommend having a second opinion from bsge Center . These surgeries are quite complex and quite one way really . And have they first put u on zoladex before your surgery to calm everything down .

dinzel profile image
dinzel in reply totiger-cub

Thank you for your reply. As the endo is in a few places and there is a chance I could lose both ovaries I really want this to be done right the first time understandably! I'm going to call the hospital on Monday and see if I can either speak to the consultant about my concerns or get an appointment to go in and see her with my ever extending list! They haven't put me on any medication as of yet and not mentioned any to me either other than wanting me to agree to the mirena coil.

Linley profile image
Linley

Firstly, I wish you a speedy recovery after your surgery-I agree with Christin_a. You need to ask questions. For experienced help try

1. The Patients Association

2. Endometriosis UK

dinzel profile image
dinzel in reply toLinley

Thank you for your reply. I plan to call the hospital on Monday to see if I can either speak to the consultant via phone or get another appointment so I can go in with my extensive list of questions. I'm sure she will understand my concerns as this isn't a 'one stop shop' condition and she should know that herself.

I have signed up for a virtual meeting this month for people who have recently been diagnosed with endo. I found that via the endometriosis uk site.

I'll look into the Patients Association site too. Thank you for that link, I didn't know that existed!

StefaniaJW profile image
StefaniaJW

I suggest you PM the name of this surgeon so I can help you understand how trained and skilled she actually is or check her out yourself. Technically only a colo-rectal/bowel surgeon touches the bowel. I would ask her if she works with an equipe during surgery.

There are many BSGE centres and Nancy Nook surgeons working within the NHS. I suggest you check out the list of BSGE centres here: bsge.org.uk/centre/ (research each centre before deciding to go for it) and join the Nancy Nook group on Facebook to access names of highly skilled surgeons. Then make an informed decision based on the info gathered. I am here if you need any help

dinzel profile image
dinzel in reply toStefaniaJW

Thank you for your reply. I'll send you her name just as soon as I'm done with this reply. I have been looking for her details online and it only seems to mention an interest in endometriosis. I can't find much or any reviews either, other than that she has a good bedside manner, which is good but not very informative. My most local BSGE centre isn't too far away so that's reassuring at least.

I'll be calling the hospital on Monday to try and either speak to the consultant over the phone or see if I can arrange an appointment to go in and see her with my list of questions.

StefaniaJW profile image
StefaniaJW in reply todinzel

Yes, please do ask all the questions mentioned + whether she performs ablation or excision surgery (that's important info to gather!!)

dinzel profile image
dinzel

Just an update to the above! I have requested a further appointment with the consultant gynaecologist so I can talk through all my questions. In the meantime I've found that there is actually an endometriosis centre at the same hospital I'm being seen at currently. I can't work out why she hasn't referred me to them :(

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