I need help with more decisions.......

[snow11]

im sorry to post again to ask for more help, but you guys are the best at giving advice!! I really dont know what to do....its a long story, but briefly......

I had my first lap at the start of Sept, excision to remove deep infiltrating endo off my POS as US Ligaments. Since then the pain is 100% worse than before. A different way sharper pain, constant, pain killers dont touch it. Work on my feet 10hours a day so by the night im in so much pain. Exercise seems to make it worse now. I also have Polycystic Ovaries. The pain is getting worse

I have been back to my GP, now finally I have been referred back onto a gyne....a diff one that the one that did my Lap

The complicated thing is that I am a professional snowboarder. I am supposed to be going away this season competing, training, travelling etc. So far I have had to pull out of 3 contests I have a really important competition and Im due to go out to Austria to train on the 3rd of Jan, then compete a couple days later

My appointment has come through to see the gyne on the 8th:(:( WHAT DO I DO????

This gyne is supposed to be really good, specialises in Endo and post lap pain

I am so fed up with the pain, being fobbed off by the docs, that I almost just want to go away on my season, take painkillers and try and ignore the pain.....not sure how ill cope, but at least try

But then what happens if the pain is something really serious?? Something that could affect my fertlity??? I really do want to have children and I have actually been told that I can only put it off for one more season

A few girls on here thought the pain could be nerve damage from the surgery????? Has anyone had this??? Or what else could it be?????? If its just pain, then I just want to carry on and push through it. But if its bad.......

ahhhhh im just so confused! what would you do?????

Im sorry for long story

x x

[LadyPenelope]

I would personally put everything on hold and sort out my health, without which I won't be able to earn a living or have a pain free life. Last year, I put everything on hold and had a bowel resection which ended up saving my life. I lost almost a year of my life and was out of work for 7 months. It was a very difficult decision to make, especially as it was very major surgery and involved having an ileostomy for a couple of months, but I knew the 2 surgeons were the best and I couldn't afford to miss that opportunity. Today, looking back, I can honestly say that it was the right decision to make. I discovered that my endo was at stage 4 and had taken over my pelvic region, this explained my unbearable pain. The surgery and recovery was the most difficult and painful thing I've had to endure but I'm glad I made the decision.

[snow11 in reply to LadyPenelope]

Hi LadyPenelope

Thank you so much for your reply. Sounds like you have had a rough time of things, but glad you are feeling a lot better now. Sounds like it was definitely the right decision for you, and I hope you are enjoying a pain free life now

I know what you mean, health should be number one, if your not feeling good its hard to enjoy anything in life. Im just so worried that I will go to this appointment and the gyne will say just to take painkillers or go on the pill. Then I will have missed my snowboarding opportunity just to be told the same thing again

Im finding it really hard to think about letting go of snowboarding, its my life. But I know that it is the right thing to do to get my health sorted. I probably wouldnt perform very well anyway right now Plus they might actually do something to sort me out at my appointment on the 8th, then I can enjoy the rest of the season pain free.....maybe!

I wish I had a crystal ball to see what this pain was, then it would make my decision easier!

x x x x x x

[LadyPenelope in reply to snow11]

Please think positive, this Gynae could be the answer to all your prayers. Lots of endo patients are still trying to get a referral to see a Gynae and will happily exchange places with you. Besides if you choose to go snowboarding, you'll spend all the time wondering if you made the right decision, wondering whether this would have been your medical breakthrough. I pray that the appointment on the 8th will bring uou into contact with the right gynae who will do everything to help you. Once you're better, you'll find more time and energy for your beloved sport. Please let me know what you decide and how it goes. Lots of hugs xxx

[snow11 in reply to LadyPenelope]

Yes your right, I must try to be more positive This gyne does sound really good, and he specialises in Endo and post Lap pain, so perfect really! Thank you for all your kind words, ill let you know what I decide. I hope you're ok and 2014 brings a pain free year x x x x x

[LadyPenelope in reply to snow11]

Thank you my dear. You can check out the Gynae by entering his name into google. There should be lots of information on him. I'm very positive that this will work out really well for you. 2014 will be your best year ever! When you're

better we can meet up so you can teach me to snowboard

[snow11 in reply to LadyPenelope]

hahah would love to teach you to snowboard! Thank you again x

[daffodil]

Hi ,I am so sorry to hear you are in so much pain and such conflict over your career.I agree with ladypenelope that your health must come first -nothing is more important.Sometimes when you finally make a decision /accept what is happening things become much easier to handle.It must be horrid to have to postpone your snowboarding chances,but if you are in pain you are not going to be in top form at all.My story is too long to repeat again,but after

having endo since 14yrs and now 48yrs,I have come to the end of medical options and am now facing radical surgery for adhesions and like ladypenelope possible bowel resection.I am terrified,but have a strong faith and just pray that the right specialists,with the right skills will be put in place.

Re trying for a family,it is really important that they find and remove as much endo as possible before you try for a baby.Endo can also be inactive so although the doctors will rell you they cant see it is still there.If you have been on any type of pill,injection to supress the endo before the lap,nothing can be found,I have had that twice as the laps have been immediately after stopping decapeptyl or the combined pill.Each time I was is 10/10 pain and bedbound,but each time I was told no endo was seen and was simply put back on the pill or depo provera,which did always settle the pain down.

One thing that may be helpful is the drug Gabapentin?This is for epilepsy and neuropathic pain.If the pain is due to nerve damage this can help - is it sharp,like glass ,shooting over sides ,kidneys,down front of legs?I am on maximum dose of Gabapentin and it does seem to help with the shooting pains,though not the other pains.I also take dihydrocedeine,paracetamol,laxative powders and if pain gets gtoo much to handle Pethidene( like morphine,as am allergic to morphine).

The problem with any surgeries is the more they open you up the more adhesions they make -it could be that the last lap has created more adhesions?But in the end if pain is controlling your life and you are having to live on painkillers then,you just cant go on like that?

Hope the posts will help you make a decision and glad you have found forum,as help is always here for you.

Sending you a great big hug.

[snow11 in reply to daffodil]

Hi Dafodill, thank you so much for taking the time to reply to me. I feel so bad reading everyones stories on here and hearing how much everyone has suffered, such a horrible thing to have. If your not feeling well its hard to enjoy anything in life, I know I would have a lot more fun snowboarding if I felt 100% Sometimes I think I should just man-up and get on with things and go and ignore the pain. But it is always there a def taints things. If this Gyne can help me then that would be amazing!

Thanks for the info on the painkillers. Have you had nerve damage from a lap??? Im so bad at describing pain, but yes, it is sharp, like glass. Its very different to the pain before, I still get the normal Endo pain around period time, but this new pain is only since the Lap, and its been constant since the lap, 100% worse than before. It feels like its getting worse and its spreading. the very tops of my legs, but not really down them? No painkillers so far have worked, ive kind of given up on them now.

Maybe adhesions?? but would I get this straight after the surgery? or do they take longer to form? Could it be an infection or something?

Im not on the pill or anything.....long story!! I really do want children and I thought I should give it every chance I should! The plan was at the end of this winter season to go on Clomid if I hadnt had a happy accident by then

Thank you again for all your help. Yes it is lovely to know that this place is here. You guys are waaaaay better than the doctors!!!

Lots of love x x

[LadyPenelope in reply to daffodil]

Hi daffodil, my heart goes out to you. It seems like we are on the same page with endo. Please don't be afraid of the bowel resection. Even though it was the most terrifying and painful experience I've had, it saved my life. What I learnt about excruciating pain is that, once it's over, it's difficult to remember it. You're right about Gabapentin, I take 900mg a day and it helps. I also have my trusty oramorph as well as all kinds of laxatives, painkillers, sleeping pills etc. I pray that your faith will see you through. xxx

[daffodil in reply to LadyPenelope]

Thank you for you kind replies -would really like to chat more with you as it does seem we are in similar situations.Can I pm you later ?I have a lot of memory problems due to Meningitis and ME,so please pm me back if I have forgotten !! In the meantime,God bless( I see you also have a faith) and hope you are in much less pain tonight.Sending you a big Hogmannay hug.

[LadyPenelope in reply to daffodil]

Daffodil, it's only my faith in God that has brought me this far. I don't know how I would have coped with having end stage endometriosis, going through a terrible and abusive marriage, a failed IVF cycle and subsequent divorce which was closely followed by meningitis and the bowel resection. I could go on and on.... Please get in touch anytime and let's chat. Its nice to know that you're not alone in your problem. I will remember to say a prayer for you during our watch night service. 2014 will be our best year ever.

[ShortStuff88]

Hey,

Can you determine which one will leave you kicking yourself more if all doesnt go according to plan.....i.e attempting to snowboard in jan and not doing your best or a gynae appt which may not make a direct impact on your life.

I may now throw a spanner in the mix by saying I would consider rescheduling the gynae appt. People are entitled to this for genuine reasons. I was a gymnast for 8yrs, I represented the city of Birmingham, was part of the national squad, I trained24hours a week after school and at weekends. I fully understand your desperation to play your sport especially when you are into it at a professional level. Granted you run the risk of suffering whilst you are out training but a few weeks isnt going to make much difference when this disease can rob us of a real existence long term.

Unfortunately im at a stage where I cant even walk my dog, id do anything to have the freedom and ability to walk more than15minutes without endo flaring. Im glad though that I put everything into days when I didn't suffer quite so much.

You say that you are having trouble accepting that snowboarding may have to be a past life, maybe this is the one last tournament you enter before you are able to hang up your skis and look to focusing on your health. Make sure though that its your decision rather than allowing endo to take it from you. I had to quit my training through injury and even now im bitter ten years after ending it knowing it wasnt my choice. I had the same injury twice in 8months, second time round was a week before a comp. I knew if I went to hospital id have my torn ankle in a cast so instead I chose to strap it up til my foot was blue and compete as part of a team but on one piece only. It was far from my best bar routine but knew id done all I could. It was thr love of my life and all I knew. The team won gold and after the ceremony I was carted to a and e, put into cast and told training days were over, if I continued id need it pinning. I know this isnt the same as endo but the question to ask is how much does your sport mean to you and what will you push just to see it once more?

I fully agree with the other ladies that your health should take top priority. From an athletes perspective you have to be fully committed to all decisions made. Is there a way that you can fully commit to snowboarding then turning your attention to your health a matter of weeks later or visa versa?

On a different note Have you read the articles on here endometriosis.org/topic/news/ they discuss fertility, I fear that I won't be able to carry my own but this site has given me hope (as well as further knowledge).

I hope ive not upset anyone by my reply, I just saw this through instinctive eyes. Make your decision based on what you will live to regret less. Your happiness and health are both as important.

all the best in whichever you decide

xx

[snow11 in reply to ShortStuff88]

Hi Digger

Thank you for your reply. Im so touched that people take the time to write back to me

Wow a gymnast, mee too!!! Well when I was younger also. I used to train lots to and represented Devon, It was my life and I loved it. We might have even crossed paths!!! Unfortunately around 15 years old, drink and boys got in the way! But im the same as you, still so sad about letting go of it. But it must be harder for you as it wasnt your choice. I was silly and messed it all up by being a teenager!! I got back into it later on at Uni, and now I still train in a gym when Im away as gymnastics helps so much with snowboarding. But for years too I couldnt even watch it on the TV as I was so upset that it was over for me

But then I found snowboarding!!!! I think im quite stubborn and quite tough with pain and I have just struggled through it for years now. I never wanted Endo to beat me. Its only now that it feels like its starting to win And by going to this appointment it kinda feels like its won...guess this sounds weird!

I have had to pull out of 3 events already since sept. and if I pull out of this contest in January, it will be my last chance to compete

Im happy to continue to power through the pain, but if it is something serious that could mess up my chances of a family, then I need to look at the bigger picture and think whats important in the long run. Wish i could see into the future!!!! But dont want to miss the comp for them to tell me its just pain and to take painkillers!

I guess the good thing for both of us is that we did lots of things with our lives before Endo took over

Im sure the answer will come to me.......well I have 2 more days to change my flight

2014 resolution....... be less indecisive!!!

Thank you for your advice and words and I hope you are ok and 2014 will bring less pain

Lots of love x x x

[ShortStuff88 in reply to snow11]

I think you are very brave with all of what is going on in your life. Although the decisions are incredibly tough to make You will make the right decision for you whichever path you chose to follow Whichever direction you chose to go down I sincerely hope that its filled with happiness.

Happy new year lovely xx

[FMcB79]

Hi,

So sorry to hear you are still I'm so much pain, it is so frustrating when you are an active person! I'm not a professional sports person by any stretch of the imagination, but I am a mad keen horses rider with my own horse and two very active dogs, plus I manage a busy pub... I hate not being able to do the things that I love so much when the pain gets too bad. I'm now 5 weeks post lap, and still in quite a bit of pain if I try to do too much - any heavy lifting, or if I walk too far I still haven't managed to get back on my poor horse. Have you read this article? centerforendo.com/articles/...

He seems to be saying that you can experience pain from the op for up to a year afterwards!

How about trying to find a private consultant? I had a couple of private consultations which weren't as expensive as I'd thought, it may be a way to speak to an expert a bit quicker? At least then it would be easier to make the decision whether or not you can compete.

Good luck with it all wishing you all the best for the new year

Xx

[snow11 in reply to FMcB79]

Hi

thank you so much for your reply I know, its so frustrating when you cant do what you love. I kind of feel lost if I cant snowboard, I need to think of a B-plan I think! Im so sorry to hear about your pain, im sure you will get back on your horse soon and its important to get your health better first (haha I should take some of my own advice!)

That article is really interesting, thank you. Seems such a long time a year! but guess maybe this could all be because im just not healed yet? I was so excited for a few months break from the pain and to do a ski season painfree

My appointment on the 8th is actually private as the waiting list for NHS was sooo long. Still had to wait a little for this one due to xmas etc. Think he does a vaginal ultrasound included in the appointment price which is good. Never had one before, not really sure what they will be able to find by doing one?

Thank you again, I really hope 2014 brings you a pain free year x xx