Hi, I was recently diagnosed with endo, stage 4 while I was on holiday in Florence. They did a laparoscopy and removed a cyst, the widespread endo and part of my ovary.
Apart from the pain I experienced just before being rushed to hospital, I’m lucky to say I didnt really have any beforehand. So, it was all a bit of a shock.
Since I have been back in the UK, I have seen my GP and they have advised I go back on hormonal contraception. But, other than that they say unless I get pain thats it.
Should i be demanding more than this? Perhaps a scan to check the operation was a success? If i didnt get pain before is it not likely I wont get it again? I travel to remote parts of Africa for work where a surprise endo repeat could be fatal. Is there anything they could do to monitor it other than only speak to me if I get pain?
Pippa xx
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Pippax
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This must have been a shock to you to go through that so suddenly.
You can ask your GP to be referred to a Gynaecological consultant, also as you have been diagnosed with stage 4 endometriosis you can ask to be referred to be seen at a BSGE clinic.
This would give you more definite answers to what route you should be taking now.
I have put some links down below for you in regards to treatments, information and the link to the centres website.
Women are only referred to a BSGE centre for surgery for stage 4 due to unmanageable pain and or infertility - the centres set the standards for complex surgery. But it sounds like you have already had your endo operated on when you were away so have been treated for it now?
When women are treated here in centres for stage 4 it is a 'package' paid for by NHS England to include any or all of diagnostic lap/scans and main excision. You are then discharged at 6 months if no problems and then followed through with quality of life questionnaire at 12 and 24 months.
I'm pretty sure NHS England wouldn't pay for you to go and have a scan to be checked as that wouldn't happen here and you couldn't expect any treatment that a woman in the UK wouldn't have had. Women here are not routinely checked to see if surgery has been a success or monitored as any need for further treatment can only be measured in terms of whether your pain is resolved or not by the surgery.
Unless they have left something behind and told you so - why do you say that a repeat would be fatal and needs monitoring? Have they told you in Italy that they have left something dangerous behind that needs monitoring?
Otherwise your GP is correct. Any onward treatment you may need will be determined by whether your pain returns and it would be usual now to recommend contraceptives to stop periods.
It sounds like you are working along the same lines as my GP. The only reason I was expecting further care is as this is what the doctor in Italy suggested should happen as a follow up. It seems in Italy they do more as a standard than in the UK.
My worry is that this time I had no symptoms until it was urgent. The Italian doctors treated my situation as an emergency and told me it could not wait. I understand that endo often returns. I dont particularly want it to get to that stage again, particularly if im in a country with limited health care.
Is it just tough luck now? Surely there is some monitoring that can be done for those who don’t experience pain?
You don't say what the emergency was but perhaps an endometrioma rupturing?
If we wind back to what would have happened had you not required emergency surgery, and your endo was found incidentally during another procedure, then such a situation does present an ethical dilemma since surgery is only done for pain and/or infertility. Even with severe disease, if the woman is asymptomatic then it wouldn't be ethically acceptable to operate unless scans show there was a danger in not operating, such as organs/structures being at risk from infiltration. Surgery for severe endo is complex and potentially high risk so there is a balancing of those risks against current quality of life which could be worsened by surgery. In that situation it would be appropriate to monitor the situation, especially if endometriomas are involved, but there is little evidence to suggest the endo necessarily will progress.
If you have had thorough excision of all your endo that was present at the time of your lap by a skilled surgeon, including the full cyst capsules of any endometriomas, then there is no reason to think it will develop again. The evidence is that deep infiltrating endo reaches a point of non-progression and since yours is now gone there is little evidence to suggest you will develop more deep endo. Taking the pill should hopefully stop your periods and prevent any new peritoneal endo from forming. So there is no routine requirement to monitor you after your endo has been excised. If we think of how many women this would involve, and the fact that women here with severe endo who are debilitated by excruciating pain are waiting over a year in many of the centres for their surgery, then there would just not be the resources to monitor everyone as well after surgery.
I don't know anything about the Italian system but it seems that many pay for private insurance alongside the public system and of course you can always pay privately for scans if you want here.
Although a scary experience it may well be a good thing it happened in Italy to get treated so swifty. I hope you remain pain free. x
Although not directly relevant to your experience now, section 6 of the ESHRE guideline might be useful about asymptomatic endo.
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Now what? they've found a cyst on a basic ultrasound but is that it now?
Histology came back clear - what next?
What do I do next ???
Lap next week
