shiraphant: (Default)
[personal profile] shiraphant
I've been posting to a very small group of people over the past months about fertility treatment.

In order to save time and faffery, I will post an edited version of the first post I made to them. I apologise if you're on my icsi filter and have already seen this, feel free to skip.



Some of you will know that since I was seventeen, the thing I have wanted more than anything else has been to carry a healthy baby to term and become a mother. I started actively trying for this when I was twenty. I won't go into detail about the countless appointments with rude, condescending, disbelieving and sometimes downright abusive doctors - I'll just say that I very soon came to regard an appointment with anyone medical as something to be feared; I expected nastiness and to leave the clinic/hospital in tears of anger and frustration. I was almost never disappointed in this. I have had seven miscarriages, the most recent of which was in December 2004. Nobody would help me or even believe that I needed help.

Finally in October 2006, I was diagnosed with lipoedema so I had a concrete explanation for my size and weight, and I got married to a thin, well-spoken man, which makes an infuriatingly large difference in how I am treated. We scraped up the money to see a specialist privately, and from there got to have some "help" from the NHS.

In June 2007, I was all set to have ovulation induction by some time in October, and all that was left was for James to have the routine checks on his fertility. We figured nothing could be wrong with him, he'd got his ex pregnant years ago. Except, of course, there was - we got a phone call saying that James' sperm count was extremely low - too low for us to be able to conceive without ICSI. Then a second test looked far more promising and it seemed that IUI - much less invasive and complicated, and crucially, available to me on the NHS - might be a possibility, which was arranged (after my specialist argued my case with the hospital committee, who apparently needed two hours of persuading because of my weight, even after having lipoedema explained to them), but the three subsequent tests showed that there was no way IUI would work, and IVF - probably with ICSI - was our only option. Which of course, we could not have on the NHS as my BMI is way above their cut-off of 30 - it didn't matter to them that it was due to the lipoedema. I don't actually mind that the NHS wouldn't fund it for us - it's an overstretched resource. I minded the fact that they were so incredibly rude to me about it.

James was also diagnosed with a grade 3 bilateral varicocele - veins supplying blood to his testicles had become varicose veins - so he was booked in for an operation to fix it. We were told that it wouldn't improve his fertility, but it would slow the deterioration. The varicocele was so large and so severe that it damaged testicular function and was causing atrophy on one side. The operation went well enough, though James' poor sperm count and quality couldn't be explained by the varicocele, and all the other parameters were normal, so the urologist had no idea why James was so very infertile. The urologist said that without a doubt, ICSI is the only option we have.

The gynaecologist in Cambridge, to whom we had been referred because we obviously needed ICSI and we couldn't have it done in London where we'd previously been seen, told us we couldn't have IVF or ICSI, we had to have IUI. This was despite letters from two different doctors explaining that IUI was not an option. The gynaecologist also told me to lose weight, despite having said that she'd read the document on lipoedema and the impossibility of weightloss sent to her by my GP. So we were pretty much stuck.

Then my dad told us that my Grandad - who died in December - had left some money, for Dad to do with as he saw fit. Dad divided the money equally between me, my sister, himself and my two first cousins on that side. There's a lot of drama and history involving my family so I won't get into it, but my sister felt that she couldn't take all the money, and gave three-quarters of her share to me. James and I already had a quarter of the money needed for one round of ICSI from an insurance payout from a crash we had two years ago, and my mum and new stepdad offered to give us the remaining money needed.

Obviously we were utterly ecstatic and made an appointment with our nearest fertility clinic - we had to wait a month for it, which was agonising - and I took a letter from my GP explaining lipoedema. We had to wait another two and a half weeks to find out if they would consent to treat me, having been told it was highly unlikely due to my weight, the unknown nature of lipoedema (which isn't in medical textbooks yet), and my unusually strong adverse reactions to hormone drugs (for example, ten days of the drug I used to take to bring on a period would result in three months of intense, suicidal depression, me shuffling around aimlessly like a zombie with no short-term memory and going from screaming violent rages to whimpering self-harming despair and back again in a day, becoming obsessed with things in an unhealthy way, and self-loathing all the time, wishing I was something beyond dead).

Thankfully, we were told that the two fattest doctors at the clinic were prepared to treat me - the others objected strenuously, but one of the fat doctors was the Medical Director so the others had to shut the hell up.

I shall fast forward through my five months of treatment; basically it was awkward and things kept going wrong, and I developed Ovarian Hyperstimulation Syndrome which can be fatal, but thankfully in my case was mild but necessitated two extra months of waiting while my ovaries calmed down a bit. The anaesthetist had refused to attend my egg retrieval because of my BMI (43), and I can't take painkillers of any variety for various reasons, so I had my egg retrieval - a painful procedure which involves needles being inserted through the vaginal wall and into the ovaries repeatedly, and which is usually done under general anaesthetic or local with sedation - with no anaesthetic, pain relief, sedation, no drugs of any kind. This is unprecedented. Many people were not happy about it.

I got 26 eggs. 20 were suitable for the ICSI process, in which an individual sperm is injected directly into each egg. 15 of them survived that process, then they all had to be frozen because of my OHSS. Nine of the embryos survived the thawing. Three of them survived the blastocyst culture. By the time I got into the lab to have a blastocyst transferred to my womb, only one was left. It did implant. I became pregnant.

I was six weeks pregnant yesterday, which was my brother's birthday. My due date was determined to be May 7th, my mother's birthday and also her dad's birthday.

Today I started bleeding, and my latest blood test result showed that my hCG levels have dropped. I am having my eighth miscarriage and will never be able to try for another baby. I will never have a child. Adoption is not possible, and in any case to me it wouldn't have been the same. I wanted to bear my husband's child. I wanted to be pregnant, carry to term, give birth, see my husband's features and mine in our child.

That's never going to happen for me, so to all of you who have kids or are waiting for them to arrive, good luck, but please don't be offended by my complete inability to read about your families. I haven't got anything to "throw myself into", and I am not going to be ok.

I may not be around much, particularly over the next week; I'm flying to Dublin with James on Sunday where I will get to spend the week bleeding out my eighth and last baby in a strange man's bathroom while my husband has to try and cope at work.

Date: 2008-09-12 01:15 pm (UTC)
From: [identity profile] edwards.livejournal.com
I cannot even imagine how heartbreaking this must be for you. I hope you and James can come through this and still be happy somehow, but for something to be so central to what you wanted, I know that will be hard.

Don't hide away too long though. Your friends will miss you.

Date: 2008-09-12 01:18 pm (UTC)
taimatsu: (Default)
From: [personal profile] taimatsu
There's nothing I can say, but I'm thinking of you, and I'm so sorry this has happened.

Date: 2008-09-12 01:24 pm (UTC)
ext_83784: Me at Wasteland, Amsterdam - April 2009 (Hug)
From: [identity profile] strangelover.livejournal.com
I'm so, so very sorry you're experiencing this pain and loss.

There are no words, just totally inadequate *hugs*. You're in my thoughts, darling.

Date: 2008-09-12 01:25 pm (UTC)
From: [identity profile] zoepaleologa.livejournal.com
Oh, goodness.

This is just heartbreaking - I'm so terribly sorry.

Date: 2008-09-12 01:26 pm (UTC)
From: [identity profile] misfitroxy.livejournal.com
I know there are no comforting words that I can lend. But please know that I'm thinking about you and wish you the absolute best in your journey forward.

Date: 2008-09-12 01:34 pm (UTC)
From: [identity profile] jozafeen.livejournal.com
Oh hon, how utterly hearbreaking. I'm so sorry.

Date: 2008-09-12 01:41 pm (UTC)
From: [identity profile] ankaret.livejournal.com
I'm so sorry to hear about the loss of your child. I can't imagine what you and James must be going through. Thinking of you both.

Date: 2008-09-12 01:54 pm (UTC)
diffrentcolours: (Default)
From: [personal profile] diffrentcolours
Wow, what an utterly bleak position for you to be in. I'm thinking about you.

Date: 2008-09-12 02:05 pm (UTC)
From: [identity profile] karohemd.livejournal.com
There are no adequate words. I am really really sorry.

Date: 2008-09-12 02:09 pm (UTC)
From: [identity profile] inbetween-girl.livejournal.com
Nothing to add to others' words. I'm gutted for you. I'm so sorry.

Date: 2008-09-12 02:16 pm (UTC)
From: [identity profile] missfairchild.livejournal.com
I'm so very sorry. This is completely tragic and my heart goes out to you both.

Date: 2008-09-12 02:30 pm (UTC)
From: [identity profile] seph-hazard.livejournal.com
God, darling, I'm so sorry. Anything I could say would be completely inadequate, but I am thinking of you and I'm so, so sorry.

Date: 2008-09-12 02:31 pm (UTC)
From: [identity profile] sera-squeak.livejournal.com
That's so utterly heartbreaking to read. I can't begin to imagine what you must be going through.

I'm so, so sorry.

Date: 2008-09-12 02:58 pm (UTC)
From: [identity profile] nils.livejournal.com
So sorry. :-/

Date: 2008-09-12 03:25 pm (UTC)
From: [identity profile] rufusuk.livejournal.com
I am so sorry to hear this. I am amazed at how brave and strong you and James have been, and how much you have been through. Egg retrieval with no form of anaesthetic or pain relief? Unimaginable.

I read your story, hoping for a happy outcome. There are no words for this outcome :( I hope you and James will be comfort to each other, and each help the other to cope.

My thoughts, and John's, are with you.

Date: 2008-09-12 03:30 pm (UTC)
From: [identity profile] lydiasings.livejournal.com
I am so very sorry. I am thinking of you both at this terribly difficult time.

Date: 2008-09-12 03:49 pm (UTC)
From: [identity profile] ias.livejournal.com
Oh I so very, very sorry. Having had three miscarriages (Nick &) I can only begin to guess at how you are both feeling.

Take care of yourselves.

Date: 2008-09-12 04:38 pm (UTC)
From: [identity profile] headinclouds.livejournal.com
I am so, so sorry to hear this. My heart goes out to you both.

Date: 2008-09-12 04:47 pm (UTC)
From: [identity profile] kissmeforlonger.livejournal.com
I'm so, so sorry.

Date: 2008-09-12 05:05 pm (UTC)
From: [identity profile] apiphile.livejournal.com
I'm sorry things have gone this way. I'm ... the medical professionals, I kind of expected the shitty attitude from them, but I'm so sorry that despite all this pain and effort, microbeckett didn't see fit to stick around.

Date: 2008-09-12 05:20 pm (UTC)
redcountess: (Default)
From: [personal profile] redcountess
I'm so sorry, thinking of you both.

Date: 2008-09-12 05:39 pm (UTC)
From: [identity profile] ngma.livejournal.com
Oh sweetness, I'm deeply saddened to read this. I know that no words can assuage what you and James are feeling, but I am honoured that you ahve chosen to share this difficult news with all of us and desperately wish the outcome could have been different:-(

J & my thoughts are with you both - we hope that you find solace and peace in time. We'll miss you and hope you'll be on LJ again soon.

Lx

Date: 2008-09-12 05:57 pm (UTC)
From: [identity profile] claire-smith.livejournal.com
Oh, honey.
You've been so supportive about my medical situation, and I had no idea you were going through all of this. I'm so, so sorry.

Date: 2008-09-12 06:58 pm (UTC)
reddragdiva: (Default)
From: [personal profile] reddragdiva
:-*

Date: 2008-09-12 07:40 pm (UTC)
From: [identity profile] dr-atheist.livejournal.com
I'm so sorry.

Date: 2008-09-12 08:19 pm (UTC)
From: [identity profile] john-callaghan.livejournal.com
Sad for and thinking of you both.

Date: 2008-09-12 08:26 pm (UTC)
From: [identity profile] gothhippiegrrl.livejournal.com
It doesn't happen often, but words fail me. I am crying as I read this. You are still in my prayers. I wish I knew what else to say to you.

I love you so, so, so much, my sweet. You have been unbelievably brave and courageous throughout this whole entire ordeal. I hope you realize that. And I hope, even more, that one day you find the peace you so desperately desire.

Date: 2008-09-12 08:28 pm (UTC)
ashbet: (Hearts+Flowers)
From: [personal profile] ashbet
I am so, so incredibly sorry, dearheart.

*gentlest of gentle hugs, and shared grief*

I am here to talk at any time if you want company or a distraction or just a listening ear -- I'll leave YIM on. I wish that there was more I could do right now.

*much love*

-- A :(

Date: 2008-09-12 08:39 pm (UTC)
From: [identity profile] faelis.livejournal.com
Oh Shira, this is the most awful news. I'm so very sorry for you & James. I can't begin to imagine what a dreadful time you're having.

Thinking of you both and wishing you find some peace.

Date: 2008-09-12 08:57 pm (UTC)
From: [identity profile] synnoveaevael.livejournal.com
my beautiful shira...

i don't have words.

*loves*

Date: 2008-09-12 09:08 pm (UTC)
From: [identity profile] gylfinir.livejournal.com
My heart goes out to you both; I'm so sorry.

Date: 2008-09-13 02:44 am (UTC)
From: [identity profile] miyo-chan.livejournal.com
I really can't even begin to understand how you feel and I feel it would just be insulting. But know I love you and you are in my thoughts and prayers every day

xxx

Date: 2008-09-13 03:43 am (UTC)
From: [identity profile] mirukux.livejournal.com
aaawww hun.. mew and meh. am so sorry :(

Date: 2008-09-15 06:41 pm (UTC)
From: [identity profile] in-thy-bounty.livejournal.com
I am deeply saddened to hear of this outcome.

Date: 2008-09-15 06:48 pm (UTC)
From: [identity profile] tuluum.livejournal.com
i'm heartbroken to read of this ... please take all the time you need to grieve :(

Date: 2008-09-15 08:17 pm (UTC)
From: [identity profile] lozette.livejournal.com
There's nohing I can say, but my heart totally goes out to you. I know you & I have taken divergent paths on this aspect of life; but I really feel for you and I wish you'd got your dream x

(((((((((((SHIRA)))))))))

Date: 2008-09-17 03:54 am (UTC)
From: [identity profile] discobabs.livejournal.com
1st -- I am sorry I haven't been around. I developed yet another viral infection and have barely been able to sit up long enough to chat with you... so I apologize deeply.

2nd -- you know I have been where you are. And I really wish there were some magical words for me to impart to you to tell you how MUCH your friendship has meant to me for the last 8??? years... I forget because it seems like forever.

I think I know just a tiny bit of how you might be feeling -- about yourself and about womanhood and about God and about fairness... every SINGLE ONE of those thoughts are yours and you are VERY entitled to them and do NOT let anyone tell you it's o.k. or you will get past this. You won't. Ever.

To say this is monumentally unfair and heinous on the past of the universe at large is a massive understatement. It's not only unfair, it's psychically destructive and the only thing I can feel when I think about you and this event -- is rage.

I can say you deserve a lot better from the powers that be, I can say a lot of things... but I know right now nothing will make you believe that.

I can only say one thing. Out of the people I have met in the last 10 years of my life - YOU and YOU ALONE have had the most profound impact on my life and my sanity. You have never judged, never questioned, never invalidated. We have disagreed but you have ALWAYS, without even asking a question, been there for me. In ways my own family never was. I was overjoyed beyond measure when you met James -- who is so OBVIOUSLY in love with you -- a love YOU DEFINITELY DESERVED!

I can only say if there is anything I can do for you right now, please let me know. If I had the funds you know I would come over and just hold your hand for a while. I won't try to give you "happy talk" or "positive self talk" because we both know what transparent B.S. that is.

Sometimes that's all you can do when something is so wrong that there are no words to make it o.k.

Date: 2008-09-17 05:14 pm (UTC)

Date: 2008-09-21 08:14 pm (UTC)
From: [identity profile] insert-token.livejournal.com
I've been away so have been out of the loop. So sorry missus.xx

Date: 2008-09-22 05:27 pm (UTC)
From: [identity profile] sparklielizard.livejournal.com
I've been hiding away for a few weeks, and so I missed this, I'm sorry :-(

I don't know what to say. I was hoping as I read it that there was going to be the happy ending you both so richly deserve, and words can't express how sorry I am that this has happened in this way. It's so cruel and unfair.

I know money is the obvious issue, but is your OHSS likely to happen if you did it again? If money were no object, is IVF with PGD something you would (or even could) consider as I have heard some very positive stories from people who have suffered multiple losses. Although as I'm sure you aware, it costs an absolute bloody fortune. I suppose the worst thing is that time is running out no matter what happens financially :-(

You are NOT selfish to want your own child. I greatly admire those who adopt, but I personally don't think I could either. Adoption sure as heck isn't the magic wand for people with fertility issues which so many naive people think it is.

I'll do my best to filter you out of anything, but please forgive me if I screw up occasionally!

Very much thinking of you and I am hoping so much that something happens that means this is not the end of your journey.

babies

Date: 2008-12-14 07:05 am (UTC)
From: (Anonymous)
If you aren't able to go through a full term......don't give up. You had mentioned adoption but that option just isn't in the cards for you.... I am here to let you know having your own child or adopting a child is exactly the same kind of love for both Don't give up on a dream! I had a son that was killed in a accident when he was 9 1/2 yrs old. I couldn't have anymore babies so we adopted. The love is the same!!! I promise you. If you do decide to adopt please try to adopt a new born........one that you would raise from the very start. Good Luck to you and yours!!!

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shiraphant

December 2010

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