Diagnostic laparoscopy advice

[JJS09]

Hi all, I’m new to the forum and I’m just looking for some advice. This is going to be a long post so I’m sorry in advance, I just don’t know who to turn to as I feel like I’m constantly dismissed.

I’ve had chronic pain since I started my period at the age of 11, I am now 23 years old and on my fourth gynaecologist having been dismissed by each one as I’m young and ‘shouldn’t be in this much pain’ you’d think that would make them investigate but clearly not.

I had an appointment with a female doctor in June (she was one of the consultants assistants) and she did all of the exams she could do took all of my symptoms went away and came back with ‘we think it’s endometriosis’. Explained what it was asked if my partner and I wanted to have kids soon, to which we replied with in about four years when Its time to get my Coil removed. She then told me about three options painkillers, the GNRH injections, or a laparoscopy which she stated most women tend to stay away from the operation as it doesn’t change how they would treat endometriosis. So I said I’d stick with painkillers until I’ve done more research into the injections as I don’t know what they will do fertility wise. So I left that appointment thinking okay so we kind of know what’s going on now after 11 years of excruciating pain and not being able to attend school properly and loosing two jobs over absences.

I went back for my second appointment which I had to push forward as the pain is unbearable. I’ve been crying to my partner that I just want it out even though I want kids i just can’t bare the pain any longer.

Anyway I saw a different doctor (another one of the consultants assistants) where he said he would rather tri-cycle the pill which I was not pleased with as I had done this for 11 years since my first gynaecologist appointment at the age of 11 and is the reason I am on the coil. He said I’m too young for the injections, I mentioned to him what his colleague had said in my last appointment about it being endometriosis and he just dismissed it was like ‘well it could be’ but he went away and spoke to the consultant. He came back with the consultant would like to give you the operation.

So that is now scheduled in for September but I’m just left with more questions, is endometriosis still what they’re looking for? What even is the laparoscopy as he didn’t tell me? I did do some research myself thankfully. Plus I’m a bit confused as to why I still haven’t met my consultant I don’t even know who he is, what he specialises in or even his name.

If anyone can give me advice on what to expect with the laparoscopy that would be great? And also is it normal to be going in for surgery having not met the consultant?

Plus why is it a thing to constantly dismiss young women who are in pain, if I went into detail about the treatment I’ve had off doctors in the past because of my age and gender I’d be typing this out all day.

Thank you to anyone who replies

[Endowarrior9]

Hi,

Firstly, I feel for you I am also under 30 and I have been through most of your situation! I’m so sorry that you’ve been dismissed so much. Unfortunately when diagnosing Endometriosis it’s a common occurrence.

Im not sure if it’s common to have surgery without having met your consultant as I have always been lucky enough to see the consultants privately.

I hope this will help, when I got my referral to a gynaecologist the first thing they also said was to try for a family but I was only 20 and not ready. So they told me they would need to do a laparoscopic surgery to fully diagnose me with Endometriosis.

The day before I was nil by mouth meaning I couldn’t eat/drink past a certain time and I also had to take some medication to help clear my stomach before surgery. If they give you this you might want to take the day before off work as well.

The day of the surgery if you are on NHS you will probably arrive at a certain time but depending on how many people are having surgery that day you may be waiting around till it’s your turn, don’t worry though, in that time you will meat some of the team doing the surgery as they will do their final checks to make sure you are okay going into surgery. You will also be put to sleep for the procedure.

Depending on the severity of the Endometriosis, surgery’s for me have lasted from 2 hours to 7 hours. They will remove what they can (in terms of the endo). And they will do this through keyhole surgery. Usually one through your belly button, and a couple more around your lower stomach. I have four scars in total and they are tiny. My first endo surgery was a day case and I was home in bed later that night so try not to worry too much.

After surgery you should have a follow up, it might be over a month after surgery when you have this but they should tell you what to expect before leaving the hospital.

In terms of the injection I had Prostap for a number of years which for me did really help with the pain. I’m no doctor though so I would always ask the consultants/Assisstance about anything you are unsure of. I find it useful to write questions down and I always take my partner with me as they often have their own questions!

Lastly, you are only young so please don’t give up just yet. I’ve wanted a hysterectomy so many times but it’s not always the best solution. I’ve heard so many stories of people experiencing more problems after opting for this. If your goal is to have a baby when your ready then keep that in mind and keep pushing your consultants to give you the information you need to help you make informed decisions about your treatment.

Really hope this helps and happy to answer and other questions!

[JJS09 in reply to Endowarrior9]

Thank you so much for your reply it’s helped a lot, I definitely do want to have a child so I will need to be more assertive when seeing my consultants so that I don’t just get dismissed like usual. Hopefully after the surgery the doctors and I will have a diagnosis and a plan going forward x

[Brambledoggy]

Make sure your surgeon is accredited to one of the BSGE centres dotted around the country and knows EXACTLY what they’re doing and that if/when they do any laparoscopy and/or subsequent surgery that it’s ALL cut out ONLY by deep excision surgery because anything else such as laser surgery whereby the endometriosis lesions are effectively burnt away or ablated is a waste of time. Your endo will not go away and could spread if this isn’t done first time round. Read my profile for my journey. And if you only do one thing, please read the book I recommend.

[JJS09 in reply to Brambledoggy]

Thank you for your reply, I was literally just talking to my boyfriend about how I thought laser surgery wouldn’t take it away or help. I’ll make sure when I’m next in to see my gynaecologist I’ll ask about his credentials or if I know his name I can google him. Thank you x

[eamc]

Hey I had a diagnostic laparoscopy just over two weeks ago to find out if I had endometriosis. I am also 23! I ended up going private to get answers as I was waiting over a year and a half on the NHS. I was very lucky to be able to do this.

Regarding the lap, it honestly wasn’t as bad as I thought it would be. Quite frankly I was petrified of the operation as I’ve a completely irrational fear of general anaesthetic but I have to say having gone through it that fear is now completely gone!

I had an initial consultation with my surgeon months before, and did not have a pre-op assessment etc. I turned up at 11 on the morning of my laparoscopy having fasted from 7 that morning. I was met by a nurse, my anaesthetist, and then my consultant to explain the procedure and get my consent.

The surgery involves making several incisions. One in your belly button, one at your bikini line and usually one other if they need to excise the endometriosis. These incisions allow the surgeon to insert a small camera to check for endometriosis and also instruments to remove the endo if it is there.

After the surgery you will spend some time in a recovery room and then will be brought back up to the ward. You will have small bandages over the incisions and also will likely be wearing a sanitary pad as you will bleed following the surgery. You will be quite sore and if you feel you need it ask for morphine post surgery. I chose to go without but it is an option. The worst part is the pain from the gas. In order to carry out a laparoscopy they need to make room for the camera etc in your tummy so once you are anaesthetised you will have some carbon dioxide gas pumped into your stomach to blow it up and make room. After surgery this gas needs to escape and in doing so creates pain (like a wind pain) across your chest/shoulders. It should pass in 1-3 days and will be worst when you move. But you do need to try and move to get it out - gentle walking etc the days after surgery will help.

About 4 hours after the surgery I was given some tea and toast, I then slept that night and was discharged at 11am the following morning. My blood pressure and wounds were checked throughout the night.

About two-three days later I was more or less up and about as normal and able to do most daily activities myself. Now 2-3 weeks later you would barely know I had it, my scars are tiny already and barely noticeable (I had my stitches removed 3 days post surgery) and the only thing I’m still experiencing is a bit of bloating which I am told is normal.

Honestly, do not worry about the laparoscopy. I did and it went far better than I could have hoped.

I wish you all the best, any questions feel free to message me xx

[JJS09 in reply to eamc]

Thank you for your reply it’s helped a lot x

[Abbs7664]

Hi, I'm so sorry that you're in so much pain and that your care hasn't been very good.

As others have said, make sure you're being seen at a BSGE centre. Also, join 'Nancy's Nook' on facebook. It has a huge amount of learning resources for endometriosis, so you can feel in control of your own healthcare.

I would be cautious about the injections. There can be some serious side effects if you're taking them for more than a few months. All of these drugs and things only mask the disease if there is any. The only way to treat endo is by skilled excision surgery.

I hope that's kinda helpful. Fingers crossed that you find some relief soon x

[JJS09 in reply to Abbs7664]

Thank you, I’ll look into the injections a bit more to get some information as my gynaecologist did say I’d be on them until I wanted to have kids which is a few years away yet x