Hi everyone! I hope you are all ok and not in too much pain. Sorry it always seems I come on here to ask advice with decisions, but I need your help again
So briefly....I am a professional snowboarder, I had a lap sept.2013, removed deep infiltrating endo from POD and US ligs. Before lap I was in pain 70% of the time, since lap pain way worse and 100%. Missed out on qualifiers for the Olympics after the lap because of the pain:(
They put me on Nortriplyline as they thought it was nerve pain. Came to America for one last season, wanted to go out on a high!! (have to try for a baby on Clomid when i get back in May, cant leave it any longer the gyne said).
Came off Nortriplyline a couple weeks ago as made me feel so dizzy and un-cordinated for snowboarding, was dangerous. Blurred vision etc. Didnt help with the pain anyway.
Been in America snowboarding since mid Jan, the pain has been getting worse and worse. Endo pain back full force, nerve pain, and new pains. Been bleeding out of my bum (im sorry) since January. Constipated, laxitives seem to be the only way I can go!! But now I have this awful pain in the middle of my stomach, up near my rib cage, really sharp. Lost my appetite totally, feel sick all the time, mega bloated (im not pregnant, ive done 3 tests!!)
My boyfriend is with me right now, but he leaves in a weeks time, i was due to stay in America to do 2 more competitions, but will be on my own really
But im struggling so much now, feel like the endo is finally winning. I try and fight it everyday, push through the pain so I can go up the mountain and train. But its getting too much. Im just crying everyday on the mountain as im trying to train due to the pain, trying to seem fine to everyone and smiley and happy, its so hard!!
The only person that knows about my Endo here is my boyfriend. Endo is so far away from the snowboard scene I would never tell anyone. Would never want sponsors etc to find out as they would not be interested in me anymore if they knew about it
So what Im asking is, what should I do???? Stay here, try to push through and do the comps, or give up, let endo win and go home with my boyfriend and get checked out. I could be due a period soon (also have PCO so irregular), so kinda hoping when it comes I feel a bit better and be able to carry on
I have my 2nd lap booked in for the 1st May. Just wanted to "go for it until then", live in my little snowboard bubble where everything is fine!!!
Do you think I should stay and push through it? Or do you think there is something bad going on in there that I need to get checked? I could go to the docs here, but will just be some random that doenst have my history and medical knowledge about Endo. Plus they might want to do tests??? Would be so expensive, I have insurance but its so complicated to claim, esp for endo, and would have to pay up front
I really really dont know what to do. Snowboarding is my life, and its slipping away from me
xxx
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snow11
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If it were me I think I would go home a little early and get it all checked and sorted because you are risking your health at the moment. I realize that probably isn't the answer you were hoping for but surely carrying on when you are so ill could do permanent damage which may mean you can't enjoy snowboarding in the future?
I know personally I carry a lot of resentment for my endo and bladder disease diagnosis (I'm 23 for goodness sake) however I had to come to a place where I accepted I couldn't do exactly what I wanted because I am so poorly. I'm now trying to work round it and not let it win.
Whatever you do I hope your next lap has a positive outcome
Hi Catness! Thank you so much for your reply Sounds like you have gone through a lot too, and only 23! I resent the Endo so much!! I really hope I can be like you and come to accept it soon. Definitely don't want to let it win! Think its a case of my head knowing the right thing to do, but my heart wanting to do the other!!! Thank you again x x
Hi. So sorry to hear you are still struggling, I remember a post from you a while back.
My main questions to you would be;
1. How long have you had the bloating?
2. Does the bloating come and go? Or is it persistent?
3. How long since you lost your appetite?
4. When you do eat, do you feel full quickly?
How long have these symptoms been going on for?
Some of these symptoms sound a little worrisome to me. I agree with Catness but would be interested in your answers to the above.. you poor poor thing. x
Hi YellowRose! Thank you for your reply The bloating comes and goes but been worse for the last few days. Dont wake up in the morning with it, just gets worse throughout the day. The feeling sick has been on and off all the time, but again worse the last few days. The loss of appetite has been the last few days too, and yes, feel full really quickly when I eat. Just not interested in food at all at the moment, trying to force something down so I can have energy to snowboard, but its a really struggle!
get yourself back here and get help. The sooner the better, you don't want to leave things to get worse and possibly prevent you from even travelling back here.
The journey will be tough as it is. So I wouldn't delay at all.
Snowboarding season will be there next year and the year after that too, even if you do have baby - you can still snowboard PROVIDED you have got the right help when you needed it.
Your lap is only 6 weeks away - coming back here and being here, you could contact the surgeon and see if the op date can be brought forward too. With seasonal bugs going round there will always be late cancellations for one thing and another and if you say you're willing to be on standby for any quicker operating theatre vacancies and that you have returned to the UK because you are no in so much more pain, there is a chance it may be brought forward. Not something that can be done if you are a third of the world away.
If you come back with your BF, he can help you with carrying bags and stuff and comfort you on the flight if the pressure of the plane journey causes even more pain - which it can do, as gasses in the body expand with the pressure of altitude and if the pressure pains are alreay there, it could turn in to a rather uncomfy journey home and you will be glad to have help and sympathy. 100% avoid drinking anything before or on the flight that is fizzy and would add the gas issue.
On the plus side the gas will contract when you descend to come in to land and should be easier to cope with on the ground.
I am pleased and surprised you managed to get any snowbording done quite honestly, so you do have to look at that as a great achievement. I know I sure couldn't have done what you have done this winter.
It's only two weeks you'd be missing but then - your support network woudn't be there and being in pain and lonely is a lot worse, that being in pain with help on hand.
My advice therefore is do your body a favour and get back to home safe and sound and get ready for the big op day and see what can be done to bring the op forward a bit...even a week earlier would save you a week of suffering.
Hi Impatient, thank you for your reply, you always give good advice. You know a lot about endo! I think I know what the right thing is to do, im just so stubborn and so determined not to give in, silly really. If I come home early will def try and get on a cancellation list, want to see whats going on in there! And yes, I should be happy that I have managed to snowboard at all really, there were points before the season where I thought it was all over really. Just dont want to let it go.....although the mountains will always be there, and maybe one day I can teach my children....hopefully! xxx
I agree with impatient. Surround your self with positive people that can help you through this at the moment like your bf. I too am a snowboarder I have however had to let the last 5 years go due to my fatigue the last trip I went on I never enjoyed it as this was taking over I have promised my self I will go again as I miss it so much so I think you should acknowledge how well you have done to carry on boarding have a few days of just playing about on ya board if ya can then go home and get sorted. Iv read loads of stories on here how people feel better after surgary and the right med so all is not quite lost yet xx
Hello Snow.
Personally I would get checked by a doctor over there but explain your medical history. Hopefully they will be able to do some tests to rule out anything else going on. Also you could ask for some stronger pain relief that doesn't interfere with your snow boarding.
When you come home and have your lap..... Please explain all your recent symptoms.
My bowel is stuck and I get constipation or diarrhoea.... My bowel movements are never "normal". I also get bloating. I haven't had bleeding but I do get shooting pains up my bum. Ouch!
You've trained really hard for your competitive snowboarding. Please don't let Endo win..... It's a bloody bully! Try to get through the next few weeks. Enjoy your snowboarding and when your boyfriend (he sounds wonderful) comes home, spend time on this forum and myself and the lovely ladies on here, will support you 100%.
Good luck with the competitions and look after yourself.
Hi Cuddlybarb, thank you for your reply Its so nice to know all you ladies are here, I really wouldnt know what to do sometimes without you. It can be such a lonely disease cant it! Well if I stay I will for sure be on here all the time:):)Thank you!
Im wondering if I have something going on with my bowel too. Sounds like you have struggled with it. I get those shooting pains up my bum too. Im doing all the right things with my diet....linseed, lots of fibre etc. I eat really healthy.....but I can just never seem to go to the loo. Only with laxatives really. and the pain going to the toilet......ouch!!!
anyway, sorry for all the toilet talk, thank you for your encouraging words and hope you feel better soon too x x x
hi again no I havent changed anything in my diet, will def try the peppermint tea, thank you. And I will get it all checked out when I can, I will go armed with a list of all the symptoms!
Yes could be due on my period, but I have PCOS so its hard to tell, could be anytime. I also dont ovulate apparently
Im sorry you have lost things due to your endo too, its such an unfair thing to happen. I hope you have luck with your IVF, ill be crossing my fingers for you. Also hope you manage to get a 3rd lap and get everything sorted out
Hi I'm new on here but so empathise with your symptoms as they are so like mine bowel wise. I had radical excision 7 weeks ago and am feeling much better. However prior to surgery it was like endo took over both mine and my families life (I spent bloody hours on the loo even after loads of laxatives) and was sooo bloated. It made work a nightmare as I had to manage my symptoms around work commitments which just became so hard.
I think you will make the right decision for you at this time. It is really shocking and distressing to find our bodies failing us so young but you sound like such a strong character who will overcome any hurdle.
Whilst recovering I have been contemplating the impact of endo and I realise that I can't keep going at the same whirlwind speed in my life trying to juggle 3 kids and a career. I am trying to learn from my partner who had a significant brain injury in her 20s (from a diving accident) she has really accepted her limitations and knows how to pace herself and prioritise her health.
Hi snow, you poor thing! I hope you do find relief soon. Just a thought....coming off nortriplyline or any antidepressants can also make you feel pretty sick as your body withdrawls from it. Body aches and pains, nausea, sick tummy, etc. Could it be possible that you are suffering withdrawls from it on top of your Endo pains which could make everything feel twice as bad..?
Hi Cooka, thanks for your reply Thats a really interesting idea actually, that could tie in. I reduced the Nortp slowly but could definitely be a reason for feeling so bad. Made me feel horrendous the whole time I was on it too, not touching it again!!
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