Recent endo diagnosis - how can I manage my endo symptoms before I go on a huge trip away?

[Haks1]

hi everyone, I am so sorry that this is a long one but it’s my first post on here so I have a lot to say. I would be so appreciative of anyone’s advice if possible :

A couple of weeks ago I visited a private gynae consultant who basically said he is 99% sure I have endometriosis- just cannot be 100% without the laparoscopy. He is also confident that it is deep infiltrating and attacking my bowl and pelvis. I have struggled with endo symptoms since I was 14 aged 20 now).

back in Oct 24 I had the Kyleena coil inserted to ease my agonising periods… this did not agree with me one bit. To cut a long story short - found out it was dislodged and stuck in my cervix so experienced the absolute worst symptoms in my whole entire life. Sciatic pelvic pain, vomitting, diarrhoea & constipation, fatigue, blood in my number 2, changing big pads every half hour to an hour and the worst abdominal cramps of my life - the list goes on.

1 month later (Dec 24) I got the first kyleena coil removed and another fitted… this did not prove beneficial for me at all. Although I wasn’t feeling as bad, my condition was bad enough still where I couldn’t leave the house and work. My sciatica pain was at its absolute worst leaving me feeling paralysed at times. As my consultant said I had to be on some form of contraception to break my cycles and slow the growth of the endo, I was nervous to have the coil removed. 3 days ago I bit the bullet and did it. I am bleeding so so much and feeling even worse. I know this could potentially die down soon but with my luck I don’t expect it to.

To get to the main point of my post, I have been invited to go to Thailand very very soon to do photography for a business. This literally is an opportunity of a life time and I just cannot miss it. My mother is seriously thinking I should cancel it but it just isn’t an option for me as I would regret it for the rest of my life if I wasn’t to go.

Does anyone at all any advice on how I can actually somewhat get back to my normal self even if it’s temporary? Even if it alleviates symptoms slightly. I have been prescribed tranexamic acid and Norethisterone to ease blood flow. I have no idea which one to take. I’m also taking strong cocodomol when I’m experiencing bad pain.

I appreciate it so so much if you read this far - the world of endo is so new to me and I’ve just been trying to come to terms with it and navigate it all which has been extremely hard as I’m sure you all know

thank you so so much! 🥰

[Hannah818]

Hi I'm sorry to hear about the pain you are going through, not sure if this will help- I took norethisterone recently for about a week to stop period bleeding and pain on a trip away. I have stage 4 endometriosis with bowel involvement. I also use ibropofen gel for pain and when it gets really bad use diflocan suppotories. Changing my diet, cutting out white bread products, anything stodgy, reducing sugar, caffeine and spicy foods has also helped alot. Have replaced with things like wholemeal bread, figs, prunes, nuts, dates, seeds, porridge, fruit, veg etc. Pilates has also helped . There's a book called 'healing endo ' which I'm reading right now which also helps to explain the disease and your options and how to manage . Hope this helps and the trip goes well 😊 I used ABTA to get travel insurance with endometriosis as preexisting condition.

[Haks1 in reply to Hannah818]

Hiya, thank you so much for your reply, I appreciate it so much!! You have added some really good advice which I’m definitely going to follow how did you find taking Norethisterone please? I’ve heard some mixed reviews about it. And that’s great to know about the travel insurance as I was struggling to find a provider! Thank you so much once again

[Hannah818 in reply to Haks1]

I used norethisterone for short term to delay period whilst travelling, it did help, period felt heavier when I came off and pain was similar , I personally wouldn't take it long term but I know some people on forum do take it long term and have found it helpful

[Haks1 in reply to Hannah818]

Thank you so much!! Think I am going to give them a try x

[Hannah818]

Sorry I forgot to add coil didn't work for me either, caused additional problems, but now started zoladex injections (temporarily menopause) which has reduced some of the pelvic pain I think, only had one shot so far .

[Haks1 in reply to Hannah818]

It’s definitely reassuring to hear that it didn’t agree with others - I thought I was a completely anomaly at first! Wishing you the best of luck with the injections, I hope it works for you x

[Crazy4cats]

It's sounds like you're going though hell. I also didn't get on with a coil, had to argue and stand my ground to get it removed. It's reassuring to hear others who've had issues, the doctors really push it as an aid to endo.

I agree with @Hannah818, I changed my diet, removed processed foods, ate lots of veg and fruit. Kept active, yoga/plates when I wasn't in pain.

I also relied on acupuncture and reflexology to help with the pain.

Heavy periods and the pains that come before and during are debilitating and we end up having to plan our lives around them so we're never "caught out" in public.

I do hope you get it all under control before Thailand. Stay positive

[Haks1 in reply to Crazy4cats]

it very much feels that way! thank you so so much for sharing your methods, the diet one really does make sense. Accupuncture and reflexology is something I will defo look into too. And it’s definitely reassuring to hear there are others who didn’t agree with the coil. And exactly! It’s so difficult to plan for. Thank you so much once again, I appreciate it so much x

[Crouton]

Just a few thoughts - if you are bleeding a lot remember to take B12/iron supplements to avoid anemia and tiredness. If your poop is pale that is not a good sign and go to GP immediately so they can monitor you.

Also, ibuprofen is anti inflammatory and might help. I like Boots brand high strength ibuprofen and codeine for those difficult days. Just remember that ibuprofen is hard on the liver and codeine can be addictive and cause constipation (which will not be helpful!). Solpadine max is stronger then cocodamol. These are strong and can make you drowsy (I don't though) so maybe try before you start the job.

I really don't recommend taking these all the time but I know there are desperate times you need something to just push through. Long term I hope you find a good long term care plan.

And if your bleeding isn't showing signs of slowing down pls go to GP immediately!

[Haks1 in reply to Crouton]

Thank you so much for your advice, I appreciate it so much! I’ve actually heard about the boots own brand ibuprofen being really good so I think I will give them a try. I am prone to anaemia anyway so I’d be shocked if I wasn’t🤣 I have just bought some B12 supplements after reading your comment so thank you so much! X

[strawberrysunset]

I’ve used the tranexamic acid when travelling before, I found it really helped me and gave me reassurance I wouldn’t bleed so heavily.

There’s some really useful tips people have posted already so I’ll just add that last year I took my electric heat pad with me abroad which felt a bit ridiculous travelling somewhere hot, but I cannot tell you how much it helped after a long flight to get into bed and use it to help relax my tummy so I’d definitely take one if it’s possible! Good luck with everything x

[Haks1 in reply to strawberrysunset]

Thank you so much! That is such a good idea that I never thought of🤣 I’m going to buy one. Thank you so much it’s much appreciated! X

[gatherings]

Sorry you are going through this!

I don't have experience with the coil so can't add anything to what's already been said but in the hopes that you continue to improve and prepare for your trip I will share some of my traveling with endometriosis self care practices:

One thing I have done (for peace of mind if nothing else) is try to book a ticket that allows me to be flexible with the dates if I need to move the arrival/departure depending on how I'm feeling. I haven't often needed to do this but I like to extend myself as much flexibility as I can to remove a layer of stress when traveling (as well as travel insurance.)

For the flight, staying hydrated, getting up to walk around, and having a hot water bottle to be filled if needed for my stomach has been helpful (I also use a heating patch that I can just stick to my stomach which I get from my acupuncturist.)

Minding diet as has been suggested is so helpful, at least for myself I can say. When I try travel I try to make sure I am getting healthy foods that are supportive of me, and staying hydrated.

(NOTE: This is anecdotal and slightly dated, but I have heard Gluten free is not always the easiest thing to find in Thailand, from chronic illness friends who have visited - maybe this has changed I don't know - just mentioning in case GF is a need.)

Meditation on flights and after, body scans, breathing exercises has really helped me with jet lag and managing symptoms. I have a regular meditation practice in general and find it beneficial.

Wishing you the best with your health and travels and congratulations on this opportunity!!