Coil it go straight for a laparoscopy?

[KJ26]

Hi everyone. I'm completely new to this and after some much needed advice. I've recently been told by the GP that I'm likely to have endometriosis. I am due to have the coil fitted in order to hopefully help ease the symptoms I am experiencing. However the GP offered to refer me for a laparoscopy buy said often people try the coil first to see if that helps. Therefore I have put off having a laparoscopy and was just wondering what everyones opinions and experience on this is? Should I just go straight for the laparoscopy to get a definite answer to all the pain and problems I'm experiencing? Many thanks to you in advance 😊

[beckymonique]

My dr and I have had several discussions about this and she always says that laparoscopy should be done second to other treatments like contractions, unless your symptoms are very severe, as having a laparoscopy will leave scar tissue (as all surgeries do) and if your aim is to preserve fertility then scar tissue doesn’t really help with that.

[Imo82]

My experience was to have the coil fitted and have the referral at the same time. My symptoms were impacting my daily life. Fatigue, pain, nausea etc. The referral wait can be long. My coil settled my bleeding but none of the pain symptoms disappeared. A subsequent MRI has showed that i have deeply infiltrating endometriosis, rectovaginal and have now had my excision surgery brought forward as i have so much bowel involvement. I think its best to cover all bases. My GP and first gynae wanted me to try coil and wait 6 months before referring me so I'm glad i went against their advice. It's got to sit right with you as this disease manifests itself so differently. Good lu k x

[Ginger24]

It would be the case of trying the alternatives before a laparoscopy. Even with a referral to the hospital or specialist they would review you first themselves and determine if other options have been tried before resorting to a laparoscopic diagnosis. This is mainly because trying different types of contraceptives and treatments can help identify if is endo based on your response to hormonal changes

[Christin_a in reply to Ginger24]

The guidelines for diagnosising endo have changed in the last year or so. Theres no more of this delaying a lap because you haven't tried various hormonal contraceptives, which don't tell them what it is or isn't (how you react absolutely does not tell them if it's endo or not).

More onus is on getting a diagnosis so the right treatments can be offered. Rather than sitting and waiting and letting it get worse before even attempting to get a diagnosis.

[Ginger24 in reply to Christin_a]

This must be a fairly recent change as I have had my first diagnostic lap and excision lap within the last 18 months. It really does just depend on your symptoms and personal preference for surgery. It’s just worth considering that even with a referral for a lap it is still likely they will check what you have tried previous to this to manage symptoms as any surgery comes with its complications.

I am 24 and had stage 4 endo with a 5 hour excision laparoscopy with a specialist in endo. He was fantastic and it has greatly improved my symptoms but everyone’s journey is different. I mentioned that they will suggest trying different contraceptives not because it identifies endo, nothing really can except from surgery but it does give the surgeon the most information possible to see what you symptoms react to. For example all the contraceptives I’ve tried slightly eased my symptoms at first and then over time got back to the stage they were at or worse. This showed my surgeon the reactivity to hormones and helped him decide to put me on zoladex to try and slow down growth before my removal.

Hormonal contraceptives don’t mask your symptoms it highlights how your body reacts and ultimately the best procedure moving forward and the best plan to manage your endo moving forward. Even surgery doesn’t ‘get rid’ of endo it’s not a one off fix. Everyone’s journeys are different but for many endo tissue grows back much like it does in the womb.

The chances are following your lap they will suggest the coil to help reduce the risk of regrowth and help manage your endo moving forward.

It is just something to be aware that you will most likely be asked by the surgeon (rightly or wrongly) if you have tried the coil so it may be beneficial to go down both routes to tick both boxes so to speak. With the amount I was struggling, especially at such as young age where endometriosis is rarely recognised, I really took my own stance of I will try anything that comes my way because even if it makes you slightly more comfortable till you can get a diagnostic lap and then further than that excision lap then it’s your self your managing 😊

[Christin_a in reply to Ginger24]

Yep totally get everyone's journey is different I'm just highlighting that they are getting away from this try loads of contraceptives before we'll consider a lap. As people like me had to jump through these hoops and because some worked and masked my symptoms it took me 12 years to get a diagnosis so I was 28 when I finally got an answer.

Hormonal contraceptive can mask symptoms (not in everyone but they do in a chunk of people) they do not stop endo growing they just help manage/mask the symptoms.

Yep there is no cure for endo. Surgery though I think is best as it's the only way to get an actual diagnosis, and to allow what can be seen to be removed. Which usually helps ease the symptoms. But as you said endometriosis can regrow just like the lining of the womb which is different to endometriosis cells.

Just be aware that they can not withold treatment or diagnosis because you haven't tried different contraceptives. Something I wish I knew years ago.

[Christin_a]

Get the surgery.

Hormonal contraceptive only mask symptoms and do not stop it growing. So if it is endo and the coil helps your symptoms all your be doing is masking your symptoms whilst the condition continues to grow.

So absolutely best to know if it is endo and have it removed now rather than waiting years as that can make it a much more surgically complex case.

[KJ26]

Hi everyone, thank you so much for all your replies. I really appreciate all your advice and opinions. I'm definitely thinking about calling my GP on Monday and asking her to go ahead with the referral. I think the thing that bothers me is that if I don't have the surgery I won't know either way and if it's not endo then I want to know what is causing all the pain and other symptoms. Thank you again, it's really good to hear other people's experiences and knowledge. Thank you!