Questions I asked my consultant - Are the... - Endometriosis UK

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Questions I asked my consultant - Are the answers red flags?

dir95 profile image
17 Replies

Hi everyone,

I have my first Laparoscopy coming up on the 15th October and after reading a lot on here and elsewhere, I felt I hadn't actually been told a lot about the procedure by my consultant.

So today I sent a list of questions over to the consultants PA (and explained I was aware so much is dependant on what's actually found during the op). HOWEVER I feel like her reply is throwing up some concerns... I'm also not sure if she has supplied these answers or if the consultant has...

Below are the Q's and A's which are the main cause of my concern. Please let me know what you think!

Q - Which areas will be checked during the procedure?

A - Uterus tubes and ovaries and near surrounding ~(gynaecological) as we are looking to treat endometriosis and cyst

Concern - A lot of my symptoms suggest endo would be in or near bowel, this reply sounds like an implication endo is only a gynae issue...

Q - If Endometriosis is found in areas other than reproductive (such as bowel) will this also be treated by *consultant* there and then or would that require a further procedure with a specialist?

A - The bowel can be treated if needed but not a lot of bowel is usually involved with the gynae organs with respect to endometriosis but he will look at all endometriosis as per his consultation with you

Concern - as with above this sound like a sweeping statement that endo doesn't often effect other organs but everything I've read implies its commonly found in areas such as bowel, bladder etc? Also how will he treat any found on the bowel if he doesn't look there as stated above?

Q - In what circumstances, if any, would I be required to have another procedure?

A - Some patients (as above) get recurrence of endometriosis so have multiple laparscopies in a lifetime until they feel their family is complete at some stage and may consider proceeding to a hysterectomy which is a cure

Concern - 'hysterectomy is a cure' ?! Am I going mad? Everything I've read has said a hysterectomy can help in some circumstances but is in no way a cure?

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dir95
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17 Replies
EndoJaz profile image
EndoJaz

I had a hysterectomy 3 yrs ago had another lap last month and endo found so def not a cure. x

dir95 profile image
dir95 in reply to EndoJaz

I'm so sorry to hear you're still suffering x

I had read about other cases of this happening. My consultants meant to be a specialist so I'm worried now if these replies are his (rather than the PA's) that he's not as knowledgeable on endo as he's made out!

EndoJaz profile image
EndoJaz in reply to dir95

It’s so bad. The secretary shouldn’t be dishing out inferior advice like this. At least you are on the ball enough to question all this. Good luck x

dir95 profile image
dir95 in reply to EndoJaz

She shouldn't - especially as someone could easily not have read up as much or recognised the issues. My boyfriends going to help me draft a reply to get clarity as I dont want to come across as rude but at the same time need to know the person operating on me knows their stuff! thank you - wishing you all the best to xx

KimPV profile image
KimPV in reply to dir95

Call up the secretary so you can hear rather than read her response. The. You will get clarity there and then, you can ask your go for a direct number if you don’t have it.

Good luck with your lap, I have mine on the 12th for possible ovarian remnant syndrome

dir95 profile image
dir95 in reply to KimPV

Thats a good idea I think I will try and call her actually - I just get so nervous I dont want to come across as rude by questioning everything she said but at the same time...

Good luck with yours! <3 x

KimPV profile image
KimPV in reply to dir95

That’s what they are there for though.. they won’t think you are rude at all.good luck and thank you x

Lindle profile image
Lindle

Oh my lord...

The detailed description of where they should look is in the European guidelines and it isn't limited to the reproductive organs.

The bowel can only be treated if it is limited to the overlying peritoneum. Otherwise you need to be referred to an endo centre. If in England this is a Prescribed Specialised Service in tertiary care under the Health and Social Care Act 2012. NHS England has published the treatment specification for this service.

You are quite correct in that a hysterectomy is not a cure and would be a last resort after all other surgical options have been exhausted. Again this is confirmed in the European guidelines.

You must only be operated on by a surgeon with expertise in diagnosing endo which means having done a training module as part of their gynecology training in their last two years or a sub-specialism that includes endo.

We are not allowed to give links but I'm sure admin will step in and direct you to all the publications you need to refer to. x

dir95 profile image
dir95 in reply to Lindle

Thanks Lindle, I'm so glad I'm not going mad that reading their answers made me nervous!

I am in the UK so will look up the guidelines...

The consultant is apparently a specialist and the following is on his NHS page 'He performs endometrial resection for heavy periods and was one of the contributors to the original *** study in 1991. He introduced laparoscopic CO2 LASER surgery to *** Hospitals NHS Trust in 1998, and has successfully treated more than 700 women suffering from endometriosis since that time.' so all sounds legit and like he should definitely know the guidelines...

I'm really HOPING the PA has written the replies herself and not the consultant.

I dont know what to do otherwise.

(I've hidden certain details from the NHS text for his privacy)

Lindle profile image
Lindle in reply to dir95

Just remember that he would not be able to operate on severe endo should you have bowel involvement unless he is part of a tertiary endo centre team. A special interest is very different from an advanced endo excision surgeon whose main expertise is advanced endo. For example some with lap skills often treat endo when their main interest may be gynaecological oncology. The main interest must be endo and they must work from a tertiary endo centre. But hopefully the surgeon has the expertise to diagnose and treat stages 1 and 2 and let's hope you don't have anything more severe. x

Moon_maiden profile image
Moon_maiden

I’m trying to clarify as well, you do need piece of mind.

I’m due a hysterectomy and asked when I saw him that he would check everywhere and excise any endo. He said he would and although he doesn’t think it’s in the bowel (consultant who did lap thinks it is) said he’d have a bowel surgeon available. The follow up letter mentioned endo, but not part of the actual management plan. Left a phone message earlier this week. I’ll try again tomorrow. I did speak to the secretary but I want it in writing.

Good luck, it’s important.

dir95 profile image
dir95 in reply to Moon_maiden

Good luck <3 hope you get some reassurance!!!

Harriet_health profile image
Harriet_health

This is really surprising, makes me wonder if the PA wrote these answers instead of the consultant?

I cancelled my lap with a non specialist as she gave me similar feelings of doubt and concern (but I asked these questions face to face with her). She even told me that she did not believe in using excision as a technique!

Ultimately it’s your body and this is major surgery so you have to trust your instincts.

I am now awaiting surgery with a specialist and he has filled me with confidence.

Only you can decide what to do and if you do go with this person because you need to get some relief right now, then no one can judge you for that. Equally if you want to walk away that is totally your call too. Best of luck to you xx

dir95 profile image
dir95 in reply to Harriet_health

I sort of think that as well as when I spoke to the consultant in person he did make me feel comfortable and confident. But now my heads just all over the place. If it is the PA that has answered she needs to be told she cant be dishing out false information but shes been really nice and helpful up until now so dont want to get her in trouble.

Nelly_Star profile image
Nelly_Star

Is your consultant an endo specialist? If your endo is on the bowel you should only be treated by an endo specialist at a BSGE centre - if this is a diagnostic lap they should not be touching it. Have you had an MRI? My bowel endo was diagnosed by MRI and I'm awaiting my excision lap with the BSGE Centre

dir95 profile image
dir95 in reply to Nelly_Star

How would i find out if he's a specialist? He has endo listed as his interest and has done a lot of work with endo patents and developed new treatment techniques etc etc but don't know if that actually makes him a specialist - I thought it did but I could be wrong!

I dont know if I do have endo on my bowel, or at all yet, this is my first lap for diagnosis and inserting the coil but I assumed to diagnose they'd need to check everywhere. He said if they find any endo tissue while in there they'd laser it away in the same op.

No I've not had an MRI

Missy100 profile image
Missy100

A hysterectomy is NOT a cure for endo. There is no 'cure', only ways to treat it.

Endo creates its own estrogen. For someone who is not an endo specialist it can be incredibly difficult to rid the body of all traces due to growths not always being plainly clear.

If you have a hysterectomy removing all parts they usually treat you with hormonal treatment that contains estrogen, afterwards.

I would also be concerned that they said they are checking the reproductive areas only but then say if necessary the bowel can be treated at the same time.

One other point, have they specified if they are using ablation or excision? One is like cutting a weed off and leaving the root behind to regrow. The other is like digging the root out as well.

I'm not surprised you are feeling uneasy - I certainly would too!

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