I'm new! Need some people to talk to:) I have PCO and deep infiltrating Endo.....and some big life decisions to make, help!

[snow11]

Hi

im 28 years old and im a professional snowboarder….but I also have PCO and deep infiltrating Endo. So I get periods every 6-11 weeks, but pain pretty much 80/90% of the time (has anyone got both of these???)

Im new to all this and I feel quite alone and just need some people to talk to that understand. This seemed like a good community, so here I am! Here is my story..

I have had problems with my periods since I was 13. Went to the doctors sooo many times but just told I would grow out of it, or it was my diet, or it was because I was sporty, or to go on the pill (cant take hormones really, it makes me feel quite bad!)

So I just gave up in the end and carried on with painkillers. I got into snowboarding and ended up going professional and travelling and competing all over the world. Its been amazing, snowboarding is what makes me happy, its my life! But I struggled with the pain so much, but would jut take codeine and carry on( not ideal when your snowboarding really!). Its hard on your body with all the training, high risk, impacts, travelling etc. But feel like im quite tough and just held it together (barely sometimes) and just carried on and ignored everything!

Then 2 years ago the pain started to get even worse. I finally started to get answers and got diagnosed with PCO. The Doc said it would be hard to conceive and that I shouldn't wait too long. I felt like I wasn't ready to give up snowboarding but couldn't just "do nothing" knowing that information. So my fiance (now husband!) and I decided to not use any protection and just see what would happen. carry on snowboarding and "un-officially" try for a baby!

2 years later and im not pregnant! In the last 2 years the pain has got so bad. So I went back to the doctors in May and finally got a diagnostic lap at the beginning of September. They found deep infiltrating end on my POD and US ligaments and used excision to cut it off. No wonder I had been in so much pain! It had probably been there for years!

The gynaecologist has now recommended I go on Clomid to try to make me ovulate. she said it was 70% chance of conceiving on this (has anyone taken this? is it ok?). My post op isnt until December, which seems ages away to ask all my questions, I have so many questions!

So now we have big decisions to make. I LOVE snowboarding sooooo much, im lost without it. And with the winter Olympics this season it would be my dream to give that a shot. But I don't want to miss out having a family, I would be devastated if I couldn't. Having kids is forever, snowboarding is just for now! I obviously cant do both, snowboard and try for a baby!

If the endo was cut out will this mean I have more time? How much time? or will it grow back somewhere else? Do I need to start officially trying now? or can I do one more season snowboarding??have I got time? Will I be out of pain? have more energy?

To be honest, not sure if I would physically be able to manage to snowboard right now. im so exhausted and still in lots of pain 1 month after the surgery- even more than before (is this normal?) I am supposed to have training in Austria end of Oct and then 2 competitions in November, Im worried now this is too close to my operation. I went back to work 1 week after the op, and have been struggling big time. 9 hours on my feet a day, 5 days a week and I can barely cope with that, don't know whats wrong with me. So worried the Endo has finally beaten me Feels like my life as I know it and love is slipping away from me

I just don't know what to do, I have no-one to talk to that knows how it feels. I can talk to my friends and husband, but don't think they understand as they don't have it!

Im sorry this is so long, hope there is someone out there that understands and I can talk to

x

[Impatient]

You know you can snow board, so do that.

You don't know if even with clomid you will be able to conceive and carry a baby to full term. So just imagine you gave up the snowboarding then discovered that you couldn't have a pregnancy either. That would be far more devastating.

You do have the once in a life time chance to aim for the world's biggest sporting event. I would do that if it were me. I'd hate to look back and not have taken such an opportunity.

As it is, i am now middle aged, i have travelled the world and done just about everything i could possibly have dreamed of doing. I don't regret that one bit.

I am delighted i did all of that (inspite of pain) before the ovrwhelming knackeredness of endo took hold.

Nowadays i can't work full time, can't afford any holidays, have no energy to even contemplate a holiday. But I don't miss that as I did so much more than most people manage to do in their early adult years.

I can't have kids, but it certainly doesn't stop me looking after other people's kids ( nephews and niece's mainly) and aside from the health issues i am pretty well content.

If I had a raft of unfulfilled ambitions i would be dpressed about that. but I took opportunities when i had them so i have lots of wonderful memories and momentos of my other life before ill health really took hold.

28 is still very young. My opnion is go for the snowboarding while you can, then after that tackle the PCO and clomid and see what happens.

Even with that if it doesn't work you are still within age range for IVF or even adoption if that is something you want to consider, and who knows what technology may come along in the next 10 years to help you even more.

Endo can regrow on the same place it was cut out if they didn't get all of it. It can also appear elsewhere too. There is no surgery that will remove it entirely and forever.

It can still reappear. And not all the endo lesions cause pain either. Some are on nerves and some bleed and irritate nearby organs and that hurts and other patches are calming sitting there not causing a problem.

It is often said the more severe the endo the less pain it causes, whereas a small patch or two could be raging agony if it happens to be on a sensitive spot.

You had major surgery and went back to work far too soon. 1 week is what you take time off for a bout of flu, but for massive surgical work it is not enough. It will slow down the healing process than if you had taken a month off work as you should have done and allowed your body the chance to heal, getting plenty of rest, good nutrition, gentle exercise and keeping hydrated.

Speak to your GP about getting signed off work for a fortnight so you can do what you should have done in the first place and give your battered body a fighting chance of recovery. Failing that ask your employer for leave even unpaid leave so you can really look after yourself.

You have so much on your plate to confuse you that you need to take a step back and stop adding to your mental and physical stress levels more than you have to.

Stick the pregnancy thing on the back burner for now. Deal with that when you are ready for motherhood.

First -do everything you can to recover from this surgery. Even if that means skipping Austra and 2 events in November (which it might do).

Second-when recovered from the op, and you know which are the genuine pains you are left with, rather than the pains of the surgery and everything that was done inside you (which takes weeks and weeks to heal) 10 weeks or so for laser work, even longer for excision work.

Then put your efforts in to pain relief as and when needed and training for the snowboarding.

Once that has been done and you have either been selected for the Olympics or not,

then that is the time to re-think the fertility angle and the Clomid.

The facts are you know you can snowboard, you love snowboarding, you know you are good, perhaps even an olympics hopeful good, so accept that as fact and go with that for the time being.

You don't know how you will cope with being a mum with illness, you don't know if you can carry a pregnancy to term, you don't know if you can even conceive a baby, you

do know that you have PCOs and Endo and they will not be disappearing by themselves.

you do know that there are many options to try as far as conceiving a baby are concerned, so all things considered, and looking at this from the viewpoint of a middle aged woman who couldn't have kids but did have a early life full of adventures, I would certainly advise you to stick with what you do know you can do....for the time being.

Others may disagree, but you have to grab oportunities for having a life of your own, before you jump in to spending the rest of it living someone else's life which is what happens when you become a parent.

[snow11 in reply to Impatient]

Thank you so much for your reply. I really appreciate it And it has helped a lot. Its actually quite refreshing to hear your advice, you sound like you are a traveller too. Although im sorry to hear of all your suffering

A lot of my friends from home have never understood the whole travelling/snowboarding thing. They are all married, houses, children, and they think im silly and that I should be trying for babies now before its too late. Then my snowboarding friends dont really know about all of my problems as I try to keep it secret. If word got out to sponsors and stuff they would probably drop me and not give me the support anymore. Most snowboarders dont really have children on the agenda!

I think your right, in the grand scheme of things another 6 months snowboarding probably wouldn't make that much difference to my fertility and stuff. I might be pretty screwed anyway!! But I could look back and really regret not snowboarding this season, at least giving it a try

I just hope that I will still be able to physically manage it as the pain etc does seem to have got worse over the last few months. Travelling and competing all seems a bit daunting right now. It can be lonely at the best of times! Hopefully once I get back into the swing of things and get my fitness up again I will feel better. Sounds like Im better off doing as much as I can now, whilst im still able. I have such a long list of things i want to do and countries I want to go to, but def feels like time in running out to do it all......

Would love to take some more time off work but its a vicious circle really, I need to work to save some money to do all these things. I get some support from sponsors but not enough to fund everything that I need to do to get to where I want to get to. But then if I dont recover properly I might not be well enough to do these events anyway!!!

Oh dear, im so sorry, feel like ive been moaning! im sure there are a lot of people in far worse off situations than me. I should be grateful for everything I have and be more positive. Im sure everything will work out fine in the end And at least now i have a diagnosis, thats a good thing!

And then concentrate on the Clomid/treatments later on Did you try any of fertility drugs? Are there good ones/bad ones? Is there anything else I can be doing in the mean time to help with the pain/tiredness? Ive heard of an endo diet????

Anyway, thank you so much again for your help. I hope you are ok and not in too much pain

[Sheri26]

Hi, just wanted to wish you luck whatever you decide, does sound like you could do with some time off and let your body recover. I went skiing four weeks after my lap and it killed me, but I'm not a physical person anyway or sporty in the slightest . Actually I wasn't very good at the skiing bit either lol.

I would just go with it and see what happens, have the treatment, try for a baby and continue snowboarding and if you fall pregnant pull out of the comps and say to sponsors surprise I'm pregnant !!!!

Best wishes x

[snow11]

Thank you for your reply and for your good luck wishes Sure you were good at Skiing! I reckon leave it up to fate for the meanwhile could be the way forwards, then if it happens, pull out of everything and say SURPRISE!!! Although it sounds like taking the Clomid would be too difficult if im traveling around and on the road. Think you need mid cycle scans etc and have to time things??

Thank you again, hope you are ok! x

[Catness]

I haven't really got anything useful to add to this but I just wanted to say good luck with whatever you decide! I too would go with the snowboarding first! Heal and have fun x

[snow11]

thank you Catness! good luck to you too, hope your feeling ok x x