Gp has expedited my laparoscopy appointment, how long will I wait

[Mindfullness4791]

I saw my go, who was brilliant and agreed 70 weeks was too long to wait for my Laparoscopy. She is writing to the consultant to expeditide. How long generally do you wait once it is expedited? Many thanks xx

[Endosufferer1]

6 months at least the time to stop your periods and the tissues to decrease a bit, that's for sure! And then a few months on top of that! And when you get your surgery, make sure to ask if it's the specialist that will be operating you on the day you're getting the surgery (not someone else who will make things worse or won't be able to remove everything)!

[Endosufferer1]

What are your symptoms? Did you do a MRI (and obviously they could see nothing)?

[Mindfullness4791 in reply to Endosufferer1]

Thank you. Pelvic pain, that radiates to the left hand side. Gets worse before my period and had it for 20 years but all scans were clear. I didn't realise Endo doesn't show on scans, until recently.Bowel and bladder issues too. I have a Mirena. He specialises in Endo, the surgeon but this is purely a diagnostic lap.

Things have got a lot worse over the past 2 years.

[Avourneen in reply to Mindfullness4791]

Why are you saying endo doesn't show on scans ? There are literally thousands of women on here who have been diagnosed with endo from scans, I am one. It is how surgeons know where to remove it from and a scan often shows issues like adenomysiosis better than a lap does.

I'm not saying scans always show endo especialy very mild superficial endo but the definitely show deep endo, although if you have a scan with an inexperienced sonographer they may well miss the endo. This doesn't mean the scans don't work it just means you need to have your scan done by someone who knows about endo.

Scans are a vital diagnostic tool and can make excision more effective plus they can reduce the need for unneccessary laparoscopies which is importnat as laps cause internal scarring and adhesions can make endo symptoms worse long term.

Giving out information like endo never shows on scans is misleading and it could make other endo sufferes end up not getting the right treatment. If your specialist told you this you should be very careful as he/she doesn't sound as though they know what they are talking about. Please think carefully about what you write.

[Littlebug77 in reply to Avourneen]

it doesn’t always show up in scans and scans are NOT the 100% diagnostic tool.

They are effective but endo CANNOT be removed or improved by any scan of a sort if it can please link me the study where it says this I am eager to learn more. Please read up to date information on endo.org to find out about the gold standard diagnostic tool which is the lap but more procedures and breakthroughs are happening every months.

Endo shows up in scans for a small percentage of women and can help show stages but it is not a 100% diagnostic tool and cannot make symptoms better.

I think you also should do you research and stop misinformation as well.

Thank you 😊

[Avourneen in reply to Littlebug77]

Little bug look at what I wrote. I said it doesn’t show up endo 100 percent of the time. I definitely didn’t say that having a scan cured or removed endo. But it does help identify endo and where it is and is a great help to surgeons.

I think scans show up endo for a large percentage of women with endo not a small percentage and I was pointing out that telling people scans are a waste of time is just not true and could lead to women getting a diagnosis missed.

It is important to base information on scientific fact not only anecdotal experience and I can’t see the need to get angry with someone for saying that.

Mindfulness I’m sorry to have upset you that wasn’t my intention but even if you add in usually the info still isn’t true. Most MRIs do detect endo as do TV ultrasounds but you do need to see someone who knows what they are doing.

Perhaps the endo moderators here could provide some clarity and confirm that scans are not a waste of time and that they are a very important diagnostic tool but are not always effective in spotting endo. Little bug please read my post and you will see I have very clearly said not 100 percent.

I’m just trying to help.

[Endosufferer1 in reply to Avourneen]

Well, to be honest, it depends on the specialist doing the MRI and most of them are not trained to spot endometriosis (it's much harder to detect it if you didn't receive a specific training). And also it depends on how old the MRI is. And for those endometriosis was detected on a MRI, mostly it's because cysts were present (otherwise, good luck to see it on the MRI).

[Mindfullness4791 in reply to Avourneen]

Thank you for upsetting me! I omitted the word usually and now have a full page rant. I am really surprised at this, as am just in the process of booking an appt with the professional you advised me to see.Just to clarify, I have been advised that it is difficult to see Endometriosus on scans but the right professional can find. Also, just to clarify, the gold standard for diagnosing Endometriosis is a Laparoscopy.

All of us on here are in a vulnerable place, please can you also think carefully before you write.

[Endosufferer1 in reply to Mindfullness4791]

You've got a saliva test and special blood test but you must do it privately or travel to some countries to do it (like Switzerland). And it costs a lot of money.

[Endosufferer1]

But normally, while getting the laparoscopy, they can remove your tissues! You never had any issues with your lungs/ thoracic cage or ribs (including pain in these parts of your body)? How about when flying, are you in a lot of pain?Before the surgery, make sure to look at what food you can or cannot eat a week prior to doing the surgery (no ginger...).

[Mindfullness4791]

I've had pain in my ribs a couple of times but apparently it was costochondritis. No pain on flying. Thanks, will do x

[Endosufferer1 in reply to Mindfullness4791]

Costochondritis is an inflammation of the cartilage that connects a rib to the breastbone. But guess how you get that inflammation? I wouldn't be surprised during the surgery if they look at your ribs to see some lesions of endo, there (unless you're an athlete or I don't know and would have used too much your ribs somehow).

[ILoveCheese2023 in reply to Mindfullness4791]

Hi mindfulness4791, I started with chest pain 7months ago and have been told it’s Costochondritis too but in March this year (after lots of cardio investigations ruled out my heart) found out I had endometriosis, multiple endo cysts on both ovaries and my bowel and ovaries are tethered to my uterus by the endometriosis. I’m convinced the chest pain is endo but waiting to see a specialist. I’m on an urgent waiting list but told I could be waiting up to 12months as the list is so long! I’m definitely asking for them to look into if the endo has grown onto my diaphragm/ribs etc.

[Mindfullness4791 in reply to ILoveCheese2023]

You poor thing, that sounds awful 🥹 I really hope you hope you get some answers 🙏 Mine was a couple of years ago, so not sure if it is related. Take care 💕

[ILoveCheese2023 in reply to Mindfullness4791]

aww ok. Thank you, you too xx

[635703]

so…write into PILS to complain about waiting times. They have process to follow you could go on a cancellation list. Be sure to get the Dr you want to do the lap.

Don’t be afraid of speaking up as they’re on your side. Very sorry you’re going through such a tough time lovely 🫂

[Mindfullness4791 in reply to 635703]

Thank you so much for your lovely message. I will do and am on the list for the correct surgeon. I feel slightly more positive after my gp appt xxx

[635703 in reply to Mindfullness4791]

aww glad your gp is supportive and recognising you need help 🫶🏻💗☀️

Sometimes people surprise us in the middle of the worst times in our lives - hope you have lots of those people in your journey 💪🏻🏆🥇look out for them 😃

[Mindfullness4791 in reply to 635703]

This page has been so supportive and I am so grateful for all of the help and support. I'm not sure how I would have got through the past few months without you all. I don't even know if it is Endo, but my gp thinks it is. Hopefully I will get some answers soon 🙏🥰

[635703 in reply to Mindfullness4791]

good stuff and my Endo was back…it’s gone now but I probably have Xhrons disease 😵‍💫🤦🏻‍♀️

[Mindfullness4791 in reply to 635703]

Oh, bless you. My husband has Crohns xx If you need any advice xx

[635703 in reply to Mindfullness4791]

ooh that’s good to know - waiting on diagnosis letter and treatment plan. It’s been very traumatic going in via ambulance with rectal bleeding and then the colonoscopy 😞🥴💩 and then the double incontinence 😭😭😭 and needing aids and adaptions and being isolated due to anxiety of double i continence 😫😫😫😫😫

[Mindfullness4791 in reply to 635703]

It's an awful illness. My husband was poorly for a very long time. Thankfully, since starting on a biologic drug, he has been in remission. He also swears by cbd oil, kefir and sauerkraut! The Crohns and Colitis site is fantastic and they have a brilliant helpline. Sending lots of love and strength to you ❤️

[635703 in reply to Mindfullness4791]

thank you so much….sad he has illness like this but yay for remission. Yes the helpline and the website I’ve used and found so helpful. Particularly the helpline has been a godsend to me. The volunteers are very professional and thouroughily well trained. Fermented foods are on my radar to try making. Symprove is a liquid probiotic and is very expensive but it was life changing, easy, with fast results. Thank you for the love and strength I need it but just having to dig deep. I’m exhausted and I’m in adult nappies and have to use a stick….heartbreaking. The Endo has gone but now this 😭😤😡🤯😱😳 Ugh 😑

[Mindfullness4791 in reply to 635703]

I'm so sorry to hear how poorly you are. It is a cruel disease and so unfair that you have this after the endometriosis. My husband also found a local support group, which was a lifesaver. He was very close to having a colostomy bag as it was severe and aggressive. This new treatment put him into complete remission and he still is now, 5 years later. Fingers crossed they can find you a treatment that works. You are always welcome to dm me anytime.Take care xxx

[Lofty1589]

It really depends on your hospital. For my previous lap in August 2022, I waited 66 weeks despite being upgraded in priority and having had 3 expedite letters sent through. Usually an expedite letter can help but it really depends on who your surgery is due to be with and the waiting list in general

[Mindfullness4791 in reply to Lofty1589]

Thank you. My original wait was 70 weeks, so anything sooner is a bonus 🙏 As you say, it depends on so many things. It's just hard without a diagnosis, as many on here know x

[Lynne_support Partner Endometriosis UK]

Hello everyone.

Thank you for replying to this post and supporting Mindfullness4791.

I can see that there has been a bit of a debate about the use of ultrasound scans and MRIs for diagnosing endometriosis. At the present time laparoscopy continues to be the definitive way of diagnosing the condition, however scans can be useful in certain circumstances and when done by trained health professionals. For example transvaginal scans can show endometriomas and MRI scans can show up deep infiltrating endometriosis. However, often superficial endometriosis doesn't show up on these scans. There is more information on this in the ESHRE guidelines eshre.eu/Guidelines-and-Leg.... You can see a webinar on these guidelines on our website youtu.be/Pslej74gTQg(Not working as expected?).

Best wishes

Lynne - Endometriosis UK

[Mindfullness4791 in reply to Lynne_support]

Thank you Lynne and for all of the support this board gives. You are all amazing 💕