Wednesday, September 14, 2011

Facebook... and the endo community

I have recently discovered a few pages on Facebook about endometriosis and though I don't regularly join in and actively discuss / interact with them all the time (mainly because they are American based) it is good to know there are support groups out there that you can turn to when you are having a bad day and see that others are having a shittier time than you. It can really put things into perspective. Until this morning.

This morning one of those groups put out a question on behalf of one of their members asking:

How long did it take for you to get pregnant after getting off birth control?

Generally I won't answer these types of questions... I mean really how can you put everything you've been through into a teeny tiny little Facebook comment? Condensing your entire journey into a few mere words. Until I read the replies.

* 3 months with number 1 & 1 month with number 2

* A year after surgery and ON Birth control pill

* 5 months post surgery

* Straight after surgery

* Only 2 girls said 2 years and one was while waiting for IVF.

My reply

‎2.5 years, 2 ops, numerous tests and a round of clomid for my 1st baby. Trying for number 2 has been 2.5 years, 3 ops without success and now back on BC pills contiuously and having a self enforced break until we decide if we do IVF.
THIS is what gets me about this blasted disease. There is so many variables and there is no rhyme or reason. Some people CAN and DO fall pregnant easily and quite regularly go on to have 4 kids even though they were the ones that were told they would struggle to have kids IF ever. There are others who fall post op. A family member of mine did this - during the 6 weeks post op on the mini pill she fell pregnant. Yet then there are others (me) where it just doesn't happen... I just found it really intriguing to see that out of 10 or so commenters 70% had no real issues when it came to pregnancy.

I understand that there is differing levels of this disease. I've hovered over the years between moderate to severe and even now I am still not really classed as a severe case (well obviously severe enough to be on Birth Control Pill continuously... so I'm figuring it must be pretty bad) but what I'm getting at is - it's not severe in the sense that I have it EVERYWHERE. I don't. I have it localised and until this last op in May it was never found anywhere else in the uterine cavity except in the pouch of douglas (however during this op in May they did remove some from my ovaries, so I am unsure whether as I get older it is just going to get worse? Perhaps?) All I know is there are people who are severe and fall pregnant *snap* then there are others that just don't. It's frustrating to have one of those diseases that is in the bigger scheme of things relatively unknown and is still understated in terms of fertility (well that's just my opinion based on fertility specialists who specialise in endometriosis.)

I could fall in a heap and cry and moan that the world is unfair and why me... but I then read the next response after mine - 12 operations AND a hysterectomy - when you read that... my heart just breaks, for her & for others in a similar position and it brings it back home - mine is really NOT that bad at all in the bigger scheme of things.

The only worrying thing is my age. I am still only 34. On my calculations I still have another 10 - 15 years (perhaps more, perhaps less) of periods ahead of me and I wonder if my battle with this disease will only worsen as the years go by?       


Sarah said...

Cas, I know I've said this before, ( although maybe not to you) but knowing that someone is having an even worse time than you and empathising with them, wishing things could be different for them doesn't in ANY way diminish what you are going through.

So, although things could be worse (and I hope and pray that they never are) please don't ever feel unable to share how you feel about your own situation because you do matter equally. x

Sarah said...

Sorry for the typo Car (hate it when that happens!)