Last Thursday I decided, along with my partner and endo specialist Dr Mathur to have a full abdominal hysterectomy.
I have had enough.
17 years into this disease, I am opting to butcher my body, to have my womb, ovaries, Fallopian tubes, ovaries - the full kit and caboodle- out.
I felt sick last week. Terrified, anxious, emotional, and grieving for my inner bits, the organs which have caused me pain for so long but which also grew my beautiful babies. I had a meltdown in John Lewis and everything (classic moment). I am scared; scared of a massive open surgery operation with 2 months recovery, scared of instant menopause (castration, anyone?!) scared that I have not done enough to stop this. But, enough is enough. I have two wonderful miracle toddlers and want to play and be with them as much as I can.
So. The latest step in my Endometriosis journey is around the corner.
Why haven't I done this before? Because this is a big op, it may still not heal me and I may still be in pain. So, it's not the easy matter-of-fact choice many believe it to be.
I truly believe that in some circumstances the body can heal itself. I believe nutrition and lifestyle play a huge part in management of conditions, and I have seen massive improvements from the changes I have made . But, unless I am drinking raw juice and doing yoga daily on a beach I just don't feel I am going to get this thing nailed on my own. If, indeed, it is ever possible to do so. For me.
So, I am now awaiting the date to get the Big H..and I am working on getting myself in a place of acceptance for it.
I don't want to be writing this post for several reasons. Firstly, I dont want to be doing it and had hoped to not come to this point. Secondly, it's a very personal choice and I do not wish to be judged for it; my experience of the internet and it's corners of nastiness lately have left me rather timid with sharing personal journeys. However, I founded Project Endo to help other women and my story in it's entirety is part of that mission. I am aware that there are women out there who have not been so lucky as me with fertility, and I have two healthy girls. I am aware there are those who oppose any medical intervention in the treatment of disease. But, I say that everyone is their own boss. No one can really judge without living my life daily, and personal choices are exactly that. Personal.
If truth be told, if it were just me I would still hang on but I have been bessed with Eva and Mia and I am doing it for them. I want them to have a mum who can play most of the time, not half the time or less. I am fully aware that even this drastic butchery may not help my pain and may even throw me other curve balls, but I feel I need to do it for my girls.
I owe them a mother.
I really and truly believe in natural therapies, in holistic approaches and complementary medicine, and I am 100% sure I would be so much worse without all the measures I have put in place.
I am a champion of the patient as expert, and think that if you get to know your own body well, then you know your limits and how much you can take. I can't take much more.
I expect there to be an expectation for everything to be ok following the op, that I will be "back ot normal". Well, I haven't been normal for two decades in terms of health, so this is another step in my journey.
I am so grateful to have my girls. I am grateful for all that my organs have provided for me and I feel so sad to let them go. This is not an easy choice.
However, I used to grieved for the children I didn't think I would have, and I won't let myself grieve for anymore time lost when I have one last choice left to try.
My endo has given me education on health, nutrition, and looking after my body. It makes me appreciate the good days.
Also, there are wonderul women out there I know of who are bravely battling terminal illnesses; let's get some perspective, this is by far an easier thing to take.
So - there you have it. My Big H is on the way. Send DVD's, yoga pants and dark chocolate. And thanks for reading.
The Big H; the post I didn't want to write http://t.co/4HN5upziML @Project_Endo
ReplyDeleteThe Big H; the post I didn't want to write http://t.co/kOuVh4KEWs via @dexdiva
ReplyDeleteRT @dexdiva: The Big H; the post I didn't want to write http://t.co/4HN5upziML @Project_Endo
ReplyDeleteOne heck of a strong lady! “@dexdiva: The Big H; the post I didn't want to write http://t.co/uFgmhWYoVn @Project_Endo”
ReplyDeleteRT @dexdiva: The Big H; the post I didn't want to write http://t.co/4HN5upziML @Project_Endo
ReplyDeleteRT @Project_Endo: The Big H; the post I didn't want to write http://t.co/kOuVh4KEWs via @dexdiva
ReplyDeleteI had this op 2 years ago after chronic pain with emdio. I have never looked back. I feel 10 years younger. I look 10 years younger. The hrt gives you shiney hair improves your sex drive. You never have to endure a period ever again. You never have to remember tampons. And you are finally pain free and it's bloody marvellous. Embrace the op & the time off. Because you just get better & better every day. Enjoy the freedom of not being able to do much. It won't last forever. Good luck. Deborah
ReplyDeleteOh, Jo, I really feel your pain. I know this wasn't an easy decision and that this is just the beginning of the next step. I really hope it brings you relief. - Amy (aka @LittleSpoon)
ReplyDeleteBless you Jo, you're so brave and a constant inspiration. Your girls are incredibly lucky to have you. Please let me know when op is due so I can come take the girls out for a day for you when you're recovering?much love xxxx
ReplyDeleteIts #endo awareness week - read my latest post http://dexterousdiva.co.uk/2013/03/03/big-h-the-post-i-didnt-want-to-write/ @Project_Endo
ReplyDeleteIts #endo awareness week - read my latest post http://t.co/4HN5upziML @Project_Endo
ReplyDeleteIts #endo awareness week - read my latest post http://t.co/kOuVh4KEWs via @dexdiva
ReplyDeleteAlso, there are wonderul women out there I know of who are bravely battling terminal illnesses; let’s get some perspective, this is by far an easier thing to take >
ReplyDeletereference this comment I think you should perhaps rethink statements like this - Endometriosis has affected my quality of life since 12 and in many respects has ruined it! So while it may not be 'terminal' it has taken my life. I had to have a Hysterectomy to try and get a quality of life, but have never had the opportunity to had my own child and now never will! I have neve experienced any nastiness on twitter- I would perhaps not make comments like that otherwise you may do!
I am so sorry you took it that way, anonymous commenter. I do know how heartbreaking endometriosis is, remember I live with it too! Your comment is one reason I hesitated to share my post. Its a shame you felt the need to remain anonymous when attacking me.
ReplyDeleteJo, as a former sufferer I have a little insight into how big a decision this was for you and I admire your strength. Wishing you a speedy recovery when you get your date through. x
ReplyDelete(PS. ignore the anons! :)
I agree with Kate. Ignore the Anon. As a woman with Endo, [and polycystic ovary syndrome] at age 39, and with no children, I too am facing the choice of a hysterecomy. And it is a choice I'm not quite ready to make yet. It terrifies me. I have nothing but respect for Jo and her decision. Regardless of your circumstance, it is a hard one to make. I commend her for putting her personal battle out there....and the guts to face it. She is an inspiration. Massive Hugs xx
ReplyDeleteYou are incredibly brave to be making this decision. I can feel your strength through these words and for the depth of your decision to be there for your children. I have a friend in New Zealand who also decided that for the Big H was the only way. She is still happy she made that choice as she was battling with Endometriosis affecting her back and bowels. You are incredible and please don't ever feel judged by anyone. You are your own person and you have to go with what feels right to you. The biggest hug I can send via the internet! BIGGEST HUG! Much comfort and strength, Melissa
ReplyDeleteBrave @dexdiva living with endometriosis
ReplyDeletehttp://t.co/NZSXYOx2B0
[...] Big H – the post I didn’t want to write [...]
ReplyDeleteFantastic bravery and a great decision to share such personal physical and emotional pain. This can only help those who are ready and accepting of insight at this time.
ReplyDeleteFor anon, without trying to sound patronising or condescending, she is doing the best she can with whatever resilience she has. I really don't think the attack is on you, rather a fearful attack on what has been and the reminder you present.
You, and all women who face this incredible decision are to be applauded and recognised for your inherent bravery.
These decisions can be about more than what is thought to be right or wrong. These decisions are based on the information and awareness of your body's and the pain...and just how much pain is acceptable over how long for there to be something left worth salvaging.
Jo , et al. You do not have to justify your actions to anyone else. You are you or own judges and even that is a shame because you are inherently harsh in those judgements.
Please celebrate who your are, that you have the emotional and intellectual ability to make conscious decisions of such magnitude and for being the most wonderful gifts you are, to humanity.
There is no way on this planet I could judge you as being anything other than completely wonderful, exceptionally resilient, and literally brutally honest for having posted this latest account of your life with endometriosis. It's an entire family going through your suffering, which you know too well, I bet. Every case of it is different, though there are, inevitably, similarities of some with others.
ReplyDeleteHysterectomy, bilateral oophorectomy, salpingo-oophorectomy, all of it or some or none are what I've thought about, too, for years. Having had enough, being at the end of the line, the bottom of the pit, more than is reasonable for a human to take for so long is nothing at all to have to defend. The admiration I have for you is immeasurable, Jo. Truly. xx
A difficult but courageous decision. I'm so proud to call you my sis in law. Lots of love xxx
ReplyDeleteI'm right there with you, my Hyster is set for April 3rd. Many people made it known that I was making the wrong decision and that I was way to young, but they aren't the ones living in my body. Sadly, I don't have kids and will never have biological kids, but I know that blood dosn't make a family and I'm more than willing to look into adoption when the time is right. I hope you get the relief you are searching for.
ReplyDeleteWow just wow, tears were in my eyes whilst reading this! I havent gone through this so i cannot offer advise, But i have had the worry of maybe not having children, I'm so happy youve been blessed with two little ones, You are so strong it must have been the most hardest desicion to make, I do hope you have a speedy recovery and that you get your well deserved relief and are pain-free and can enjoy life to the full and normally x x x
ReplyDelete[...] Blog post: the big h – the post I didn’t want to write. [...]
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