First Laparoscopy

[nld941]

Hi all,

I’m new to this community and feeling rather nervous about posting, however I would appreciate advice from anyone who has similar experiences.

My unfortunate journey with Endometriosis started many years ago, however the contraceptive pill masked my symptoms for most of my teenage years / early twenties. Although I was back and forth to my GP with typical Endo symptoms, this was never suggested in terms of diagnosis. I was told it was likely anxiety (?!). Anyway, it wasnt until 2 years ago at age 26 that I decided to stop taking the pill in order to regulate my hormones / body, in hopes of trying to conceive.

Since then, symptoms related to Endo has hit me like a ton of bricks. In December 2021 I was rushed to A&E with suspected appendicitis. I was kept in over night as blood work indicated an infection. I was told I would receive an ultrasound / scan but this didnt happen. I was discharged with no answers, only that it must have been a bad case of period pain. I returned to my GP a couple of days later, finally someone listened to me and she requested an ultrasound, suspecting I had an ovarian cyst. Sure enough, the scan confirmed I had a large ovarian cyst (suspected endometrioma) on one of my ovaries; I was referred to the Gynaecology Dept at my local hospital, whom suspected Endometriosis.

As I emphasised the importance of preserving any chance I have in terms of fertility, a Laparoscopy was suggested. I was referred to the Fertility Clinic and carried out the required tests etc. I received a further scan 6 months after my referral to Gynae, where it was found that the endometrioma had grown significantly in size; due to risks associated with the cyst bursting / ovarian torsion, I was placed on an urgent list for surgery. 10 months after being open to the Gynae Dept and 2 cancellations later, I finally received the Laparoscopy two days ago. My Gynaecologist performed the surgery and shared I am stage 3-4, another Endometrioma was found on my other cyst, one fallopian tube was partially blocked (dye test performed), and some organs were fused together. She also said the large cyst that we were aware of had already burst by the time she went in to perform the Lap… unsure as to whether this happened during procedure or not (?!). She managed to remove a patch of Endo and the “burst” cyst, however left everything else, including the cyst on my other ovary, due to the risk of further damage to my reproductive organs.

Following the Lap, I was consulted by the Gynae who said I’d require a referral to a specific Specialist Endometriosis Centre; my care in terms of Fertility Clinic/Treatment would also be transferred to this hospital so that everything is done in one place. My question is, will this referral be done by the Gynae or will my GP have to do this? I received a copy of my discharge summary / op report but it’s rather vague, no documentation of plans to refer me to this centre. However, the nurses whom looked after me on the ward confirmed that the Consultant had documented this in my file / clinical notes.

I guess I’m just feeling a little confused and deflated. This was my first ever surgery and I’m struggling with recovery, though it’s early days. I have 4 incisions and the one lower down in my pubic area is causing significant pain. I’m afraid to shower and did not receive much advice regarding aftercare.

Does anyone have any advice regarding the pathway / what to expect if you are referred to a Specialist Centre following initial Lap please? I was told this would be funded by the NHS as my case apparently meets the criteria for specialist care… between dealing with Gynae, Fertility Clinic and my GP, I’m unsure who my point of contact is.

In terms of recovery, I will be off for 2 weeks. When is it safe to shower, drive etc?

Thank you!

[Lindle]

I'll come back later with info on the pathway but in the meantime are you in England?

[nld941 in reply to Lindle]

Hi Lindle, no I’m in North Wales, but the specialist centre I’m referring to is in England, about an hour’s drive away. Thanks!

[Lindle in reply to nld941]

Has it been agreed to refer you to a centre in England?

[nld941 in reply to Lindle]

Hi Lindle, yes it’s been agreed. Women from North Wales whom meet the criteria for specialist treatment are referred to this particular centre, from my understanding. X

[Purple_Badgers]

Hi! My first ever surgery was an emergency operation due to what they thought was appendicitis but turned out to be endo!

Just wanted to let you know that it was my GP who referred me to the endo centre which I am currently under. This was via NHS England, so not their normal system of referrals, and I had to help them do this because they weren’t familiar with the system.

Also, I was told it was fine to shower after the op, just to take it steady and not rub or scrub the incisions directly. OK to get them wet and gently pat dry.

Wishing you the best of luck with it all xxx

[nld941 in reply to Purple_Badgers]

Hi, thanks for your reply 😊

I’m so sorry to hear that your op was done on an emergency basis. From reading posts on here it seems to be a running theme that pain caused by Endo seems to be mistaken for Appendicitis initially.

Thanks for the info - I have spoken to my GP and Fertility Nurse today as I’m keen for answers… my GP said she would be happy to complete the referral however the discharge papers haven't come through as of yet therefore she is holding back to wait if the Gynaecologist has done it. Have been advised to focus on recovery for now and to call within 2 weeks… my Fertility Nurse is going to refer me for IVF treatment based on a discussion she had with my Gynaecologist following surgery. So much to take in, now I’m wondering if I should focus on IVF or further treatment at the Specialist Centre following a referral!

I’ve managed a shower but I’m in so much pain. I’m trying not to over do it!

Thank you xxx

[Booknerd1598]

Hi I'm really sorry you've had all this trouble I have stage 3 and had a cyst on my ovary too they had reconstruct part of my Overy (only just found that part out 3 months down the line from my lap)

I can't comment on the specialist centre but I'd say contact the gynae as they are the ones who sound like they want you to be referred to it and if it's not them they can sign post you to the correct team.

With the showering you can get waterproof adhesive dressings either at the pharmacy or supermarket and can shower after 2 days I'd avoid a bath for 2 weeks though.

I had 3 weeks off work after and I definitely needed it. Just make sure you don't over exert yourself as sometimes with painkillers you may feel fine but later feel like you over did it.

heat pads, tens, painkillers, essential oils massaged to areas around the incisions I found helped with a heat pad over it.

I hope this has helped in some way, hope recovery is OK for you

[nld941]

Hi,

Thank you for your reply - all this info has been really helpful. I’m still confused as to what was actually done during the Lap; though my Gynae / Consultant did come and speak to me after, it was a lot to process. Before I spoke to the Consultant spoke to me I had 3 Jr Dr’s come and speak to me who gave me slightly different info. I think they reconstructed part of my Ovary too in an attempt to remove a cyst but didnt want to do too much for risk of damaging my ovarian reserve.

I’ve managed to have showers and been to my GP who changed my dressings. I’m going back next week (1 week post op) to have them removed.

How was your post op appt, if you dont mind me asking? The thought of waiting 3 months for my appt with so much uncertainty is scary…

I’ve been having trouble with sleeping as I feel my stitches stretching when laying flat, been trying to prop myself up with pillows behind my knees etc.

I’m in a dilemma about moving too much which may cause delay in healing but also afraid of blood clots developing etc. Also my bottom / thighs feel tingly / numb so I need to get up!

Thanks for the advice, appreciated xxx