What's next after my laparoscopy and follow up appointment?

[greenleaf1997]

Hey guys, a few weeks ago I had a laparoscopy to remove an ovarian cyst and to try to remove all the endometriosis I had. I just had follow up appointment with my gyno and he said the cyst was successfully removed and still have both my ovaries. But he could only remove most of the endometriosis, so I still have bits of it remaining as they are way too close to the main blood vessels and major organs, he didn't want to risk removing them. I had the mirena coil inserted at the same time so he said that should keep control of my endo but it is likely that the endo will come back. But I am now not under his care anymore?? And if any symptoms come back, I have to tell my GP and they will refer me to him again. I feel a bit lost now and the only long term care I have been given is the mirena coil and to 'keep an eye' on any pain and symptoms. I'm not sure where to go from here now - any advice please?

[EndoJaz]

Can I ask how big the cyst was as mine is 3.5cm so too small to remove. It’s horrible knowing it’s still inside and they can’t do anything. I have been told to start the menopause jabs now as had many surgeries. I am 46 so feel it’s worth a go. Good luck and sending u hugs xx

[greenleaf1997 in reply to EndoJaz]

Hey I’m so sorry you’re going through the same thing. My cyst was 7cm so was causing me a lot of pain, especially during my periods. I hope the jabs are helping you and are not feeling too down x

[thara9643]

This is something to discuss with your doctor. The office contact phone number should be on your official discharge letter somewhere. Or you can always send them a email to find out. Also the true size of the cyst that was found should be mentioned on the medical paperwork as well.

[luthien]

Hi, they do seem to have left you in the dark about what to do next, whom to go to etc.

Here's what should happen:

Operation - as you've said to remove the cyst and as much endometriosis as possible

Surgeon letter sent to GP - should also be sent to you or you can call your GP for this.

2 week post op check up - surgeon (should also be your specialist) goes through findings, including report and photos, what to expect during your operation recovery and planning for next few months. At this point you might need to contact your GP for any pain relief etc, I could call my specialists secretary to book appts

4 month follow up - specialist to find out how your recovery has been, any concerns you have, what they plan to do next. It's at this point where they should sign you off as needing no more treatment from them - if they don't feel you need any specialist care over the next say 6 months to a few years

As your endo hasn't been all removed, but you have had the coil it could be that your specialist has decided that's the point you don't need to see them anymore - nothing they can do sort of thing as hormones can take up to 6 months to get used to.

Were you seen and operated on by an endometriosis specialist? How did they remove your endo? Ideally this should be excision. Make sure they have removed your cyst; some say "removed" and they mean drained, it can refill, the actual sac of the cyst needs removing to prevent this - you can check via your notes. Sounds like a general gynae as they often won't touch other organs / deep endo and often just put the coil in because it means they've "treated" you.

The coil in itself isn't a direct treatment and will not reduce endo, it may help you cope with symptoms, but it's worthwhile checking out the side effects. The coil has been shown to slow endo growth and can help some women have a relatively normal life. For some women it's worked perfectly and helped them either never need surgery or not need any more additional ones. A good specialist will not suggest any hormones until 4 - 6 months after your surgery; this is when your body has fully healed and you'll have an idea of your remaining endo symptoms. Having the coil in too early can cause you to be confused about what are recovery symptoms / your new normal / your side effects from the hormones. My specialist will not consider hormones until about 6 months after operations.

Next steps:

1) Contact your GP to get your operation notes, they should print them off for you to collect or post them to you. This should include; the events of the operation, what was found where, including sizes and amounts, what was removed and what was left. It should also ideally have a stage on there (severity of endo) but may not, don't worry for the moment. We can help explain them.

2) Find out if your specialist is an endo specialist - this will give you an idea of why they did the surgery in a specific way

3)Look for an endo specialist in your area - if you endo includes other organs such as the bladder and bowel you may be able to be seen at a BSGE center. If you're not sure, you can google endometriosis specialists or gynae specialist with an interest in endo and check that way. You can contact individual specialists via their secretary to explain your situation, and they'll pass on the info to the specialist, he / she will give you an idea of what else they could to help your situation.

bsge.org.uk/centre/

You could also look at private specialist, again google. They quite often can see you privately, a £200 cost for about 45 mins to an hour consultation, and if they think surgery / investigation is preferred they can put you on their NHS list. This will mean no surgery fees, and may be shorter than the standard NHS waiting times, also means you know whom is operating on you.

4) Check out the side effects of the coil, and research into pros and cons, so you can keep track of each day of your cycles to both monitor coil and endo symptoms.

5) Consider surgery - this isn't necessarily something you may want to do but based on my experience, I had a few things to consider which may help you:

Your endo may get worse (it could stay the same), if it does it can spread and start to perforate organs (mine was almost at that point, and I didn't know). So would you rather know what's happening as soon as possible so you can decide what you'd like to do?

That could just be go with your surgeons notes and use those as reference to monitor your symptoms.

Or consider an endo specialist, they'll do a diagnostic lap, so that you can have an idea of how things are having been on the coil say after a year.

Or an endo specialist may look at your notes, do a diagnostic lap with excision of endo on all the organs they can, often they'll know how to excise effectively off the bladder, uterus, tubes, ovaries, vaginal wall, anything inside the vagina (cysts, fibroids), surface of the large intestines, and abdominal area.

Or if the endo specialist feels it's severe they can have bladder and bowel specialists present - they may want to a second lap for that as they quite often want to assess first, just in-case they don't need the extra surgeons - this is what I had done.

I'm not sure if this helps, hopefully it gives you some ideas.

Just remember it's your body, so you know if something's not right or if you feel you haven't been given the right treatment.

Feel free to ask about anything or message x

[greenleaf1997 in reply to luthien]

Hey this is a great bit of info so thank you so much for taking the time to reply to me. Is the surgeon letter the clinical summary that is quite technical or is it just a general letter? My surgeon was a general gyno and said the endometriosis was burnt x

[luthien in reply to greenleaf1997]

I'm glad you found some of it useful!

Regarding the letter; the clinical summary could be the right one. I'm not sure. Mine didn't have a name it just had a subject of "Endometriosis Excision Surgery: Findings and Procedure". It was sent to my GP and gave a detailed description of my symptoms I'd presented with, our discussions, what I had chosen to have done, his suggestions, what he had seen / found during the operation, what he had removed, how it all looked and any next steps. It should be something the GP can use to see what's happened when you go back to them should you need painkillers / hormones etc.

General Gynae - you should really see an endo specialist, as quite a few women on here have said; you'll get better, specialised treatment and you'll. "Burining" off is the non medical term for diathermy, if you research into it you'll find this is the quickest, less invasive form of "removing" endo I say removing in inverted commas as it only takes off the endo top layer, leaving the more deep endo behind. Think weeds; blowtorching the green bits you can see will kill the top part of the weed but it'll leave behind the roots and these are what the weed uses to spread. That's why a good specialist will choose excision; this is like using a trowel and taking out the whole weed, it's all gone. In the case of endo this means it will be less likely to spread; it can never be completely removed because it only needs a few cells left behind, we can't see those.

It's really up to you how you want to next proceed; but the above advice I've suggested still makes sense and is still relevant to your situation.

It seems to be that we need to learn from what we go through to know what to push for next, that's when I've found these forums and all the women on here so amazing!

[Cr2021]

Were you under a normal gynacologist?? As generally when your under a BSGE they keep you under their radar for some time after and have you back for reviews for example I had a massive op 2 years ago, my review months later I was singing their praises then 6 months later I was back again for review and with all the same symptoms so MRI was booked etc and etc and getting surgery again... look up your local BSGE team online and request your GP to refer you.

[greenleaf1997 in reply to Cr2021]

Yes I was I believe - he wasn't an endometriosis specialist or anything. I'll have a look on the BSGE website and see what I can do. Thank you for replying, really appreciated x