I’m due to go to South America and Asia shortly (multi day trekking, hiking at altitude, several days in the jungle/rainforest, islands etc basically a lot of remote places)
Found out I have 2 endometriomas recently from an MRI (5cm and 3cm on one ovary).
Paid private to find a consultant who I could see ASAP, his view was he wouldn’t advise going due to risk of torsion, rupture, infection etc (that wasn’t based on my scans or anything, just the short report I was given, as he couldn’t interpret my MRI images?!) and going places where I don’t speak the language/access medical facilities would add more risk.
he said it depends on my attitude to risk, everyone’s is different etc but that was his personal view.
Now he’s planted that seed of doubt I don’t know what to do…
has anyone received any advice from consultants around travelling with large endometriomas?
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Pastablue
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that’s a tricky situation I’m sorry. But unlikely insurance will cover you for issues if a consultant has advised of these risks and not to travel to remote areas etc. 5cm and 3cm endometriomas on one ovary do add a lot of weight and bulk that could increase the risk of torsion so that seems a legitimate concern. Have you told your insurance company? If they won’t cover that probably gives you some better idea of what to do?
I told them I had endometriosis but not the details of it as they never asked. the gynae I saw beforehand said yeah no problems go ahead basically so feel like I’ve had completely different opinions
I’m sorry you’re in the position. Please be 100% up front with insurance. I’ve seen too many people end up in horrific debts due to not being covered properly or allowing company to weasel out as you’ve not been fully honest. Are you taking an adventure type policy that covers for remote areas, hiking at altitude etc? Make sure they are aware you have the endometriomas and if you have any upcoming plans for monitoring or surgery. These are all relevant things for the underwriters. If you can’t find anyone to insure you, that is sadly your answer. If you can then it might be more expensive (£70 sounds cheap for policy with pre existing condition and type of trip you’re describing) but would save the heartache if anything happens and you end up with 10s of thousands of debt. Best of luck 🤞🏼
Thanks ! And I do, thing is I haven’t seen my NHS specialist yet, just been referred so have no idea what comes next which is the problem. No plans for monitoring as I’m just waiting for my first appointment which is most likely months away :/
I guess the only thing you can say is that you are waiting to be seen. Did the private drs you’ve seen have an opinion on what next re monitoring vs surgery?
He said he would recommend surgery in my situation but waitlist would be over a year (where he works on NHS). He said you’d do all of the fertility tests first though annd depending what comes of that surgery may not be the best option. He said another ultrasound would be done just before surgery so no other monitoring
I did declare this all of this on the phone but the additional cost was still only £70. When adding endo as a condition it only triggered one other questions and I answered truthfully for all of the others
I think if you’ve told them all that (and maybe ensured they’re aware of ovarian cyst type questions too as though related to endo they may have specific questions on ovarian cysts?) then from insurance point of view you’ve done everything possible. My only other advice would be to consider who you’re travelling with eg guide who has remote area radio phone or whether you can hire one for emergencies. We did a big trip overlanding in remote areas Africa far from any civilisation or hospitals a few years ago and were able to hire a radio phone for emergencies when we hired our 4x4. My husband has a condition that’s stable but could need help in emergency too so it felt worthwhile doing that for reassurance.
Ah thank you I did call again around ovarian cysts as I technically have one which isn’t an endometrioma so I did have to add that as well which was additional, so thanks for prompting me on that and for all of your advice xxx
Hi Pastablue, It is understandable you now have that seed of doubt planted by your consultant, we put our health in their hands but it sounds like an incredible trip you have planned.
I am currently on holiday travelling across Turkey, I also have 2 large endometriomas that have returned post lap 12 months ago. Whilst my consultant/GP didn't advice against it, I have made sure I have a decent insurance policy god forbid anything did happen, I am also currently on my period and packed plenty of medication which has saved me a lot 🙏🏻
It could be worth speaking to your GP and see what they advise also ✨️
I used 'medical insurance compared' to get a quote. I have travelled with a cyst over 15cm. It had been growing slowly for years and Consultant was reluctant to do anything whilst it wasn't bothering me too much. I have had it removed now as it got to 20cm and was very uncomfortable. Anyway my point is, you could wait a long time if ever to get treatment and if you are not in a lot of pain, do you want to put your life on hold in the meantime for a cyst that may not grow or rupture. If you feel fit enough to go then go but yes as others have advised, check with GP and get travel insurance. Your trip sounds amazing, so fingers crossed.
I’m in a similar situation to you. I have a 10cm endometrioma on left ovary. I was supposed to be going on a cruise but I can’t get travel insurance. My consultant said mine is unlikely to rupture or twist as I have adhesions and everything is stuck down, still can’t get insurance though! I am now too stressed to go on the cruise as if anything happened, I would not be covered! I hope you get it sorted x
my travel insurance just wanted to know what condition I had and didn’t really ask any other questions, so they only quoted £70… did you have to declare the endometrioma?
When I told them I had endometriosis they asked me if I was awaiting any further investigations or scans, I told them I have an ultrasound scan every 6 months. They then said the underwriter would not insure me as I was still undergoing investigation. I told them it was routine that I had a diagnosis etc, but they said because I was awaiting further scans, they would not insure me. I hadn’t even told the insurer about the endometrioma, I’ve never had problems getting insurance before with endometriosis which I’ve had for years!
Did you try with a medical insurance company? I have a brain tumour and Im an amputee and got cover from good to go, All clear and AXA where 2 other companies I tried.
Hi Purplestar! I will try them! I have a benign brain malformation (Cavernoma) that’s another thing that makes it difficult to insure and it’s bloody expensive! But in this instance it wasn’t the cavernoma, it was the endometriosis! I had tried staysure and All clear. Thanks for letting me know x
just thinking logically: if this kind of movement is regular in your life, then there is probably less of a problem with the endometrioma cyst. If you rarely “move” that much, you are more likely to overexert yourself. No doctor will predict it for you, if you feel you can handle the pace, don't have any doubts because it's worse if you stress about it.
I had a 10cm endometrioma diagnosed as cause of pain. General gyne said I needed urgent surgery due to the risk of torsion because of its size. Endo specialist looked at the same scans and said there was no risk of torsion because of adhesions. So I guess advice is to get an opinion off a specialist BUT make sure they have all the information possible.
Sadly I don’t have the time as I’ve only just been referred to the specialist and going away in 2 weeks time. Called her secretary so many times and she still hasn’t looked at my notes to advise so not much more I can do in that respect
i think if you are hiking regularly or are quite active in general and nothing has happened so far, it‘s unlikely that will happen exactly then. I‘ve had both rupture and torsion (not fun) and the torsion was from just a 2cm endometrioma and it happened while I was sleeping so… There‘s really nothing that „triggers“ it sometimes. so I don‘t see how this would be added risk, just that the risk does exist like any other day as well…
Definitely declare it on your travel insurance and make sure they still cover you. And make sure you would know where to go/who to call etc in case it does happen. You could even have a paper ready describing the situation in the native language? Idk, basically just be as prepared as possible.
I haven’t received advice specially related to this but from someone who has had an 11cm endometrioma and a 4cm that burst the pain is indescribable. But on the other hand when mine burst I was just at work. I did have a fair deal of mental stress but not physical. So it could happen whenever — I know not reassuring.
I have just had another endometrioma removed. Whilst waiting for this surgery my consultant advised against intense execise as it led to painful flare ups. I’ve always been fairly active so this was a bit of a surprise. I had a lot of adhesions also when they operated recently and was under for a long time again. This has led to weight gain and exasperated my mental health but I have to admit I had far less flare ups. Not all bad I got a dog and now (well I will post-recovery) be able to take her out for our long walks together. Lower stress exercise I still manage but anything overly strenuous I run the risk of a flare up. This is just how my body reacts though and it may be different for you.
This isn’t me saying don’t go as I can anticipate you’ve done a lot of training and are really excited but I would weigh up a few things.
Have you got good health insurance?
Have you let them know changes to your diagnosis?
Are you used to trekking? Have you suffered any flare ups related to it?
Will you be doing acclimatisation walks?
Could you do an alternate activity if the acclimatisation isn’t successful? (I now realise I must have had an endo related flare up when I did an acclimatisation walk for a trek 10 years ago — I was pretty ill and in terrible pain for 2 days but then it improved and although I didn’t get to do the trek I had trained for I did get to do some local volunteering which I loved.)
Are you going with people you trust?
Do you have any other active endo symptoms?
Can you assess triggers for flare ups if you do?
Could you postpone the trip?
How would you feel doing this?
I know this is rather rambling but I just thought it might help. This isn’t me saying don’t go but these are the types of things I’d consider. Also I echo concerns about waiting and putting your life on hold — this is important to weigh up. The trip sounds amazing!
I’m generally pretty fit and weight lift 4 times a week and run once a week as well. I don’t really know about effects of altitude because I haven’t been that high before but I’m used to hiking lots. Even going through the medical questions again for my existing policy it was still only an additional £70. I did say I’m waiting to see the nhs consultant but that could be months, but from who I’ve seen surgery was recommended (but again that is year/years away) according to him
Go for it! I didn’t want to scare just wanted to share my own experience. You’ve got insurance and if anything did happen you’d be covered. I’ve put so much stuff off because of this condition and I wish I hadn’t but hey bodies are strange things. Have the best time.
hi, I went to Costa Rica with two endometriomas about 2 months before my last excision and was ok. Under the advice of my consultant took out a premium travel insurance policy.
Your trip sounds amazing and as long as you rest and don’t go beyond your limits.
My advice would be to go because now in my late 30’s the disease has left me unable to walk, sit or stand for long and travelling isn’t possible.
I’m therefore very thankful for the vast amount of travelling around the world I did before the disease took over completely and ensured I was unable to.
I’d hate to be where I am now without the memories to reflect on and left with frustrations of wishing I’d gone when I was able to.
Sorry I’ve gone on a bit there but hope it makes sense.
The great thing about smart phones is if you did end up needing medical care, they have lots of translation apps. Plus I’m pretty sure most insurers would provide an interpreter too.
I ended up in hospital in a Thai hospital but in Cambodia once and if anything there care was better than UK hospitals.
Enjoy your travels, I’m rather jealous 🤣❤️ best wishes with the disease too I hope you get the treatment you deserve ❤️
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