Good results!

It’s a week since we went to the fertility clinic to meet with the consultant. We had very promising news! The hormones tested for were AMH, LH and FSH, and my AMH level had actually improved! It’s still below what it should be for my age – I’m 37 so it should really be above 5.5. But considering it was 1.4 in April, I was very encouraged to learn that it had actually gone up to 4! So my theory was probably right; although everyone was telling me  prostap (Lupron) injection treatment for endometriosis would not affect my AMH level, it seems it did. What’s more, the consultant even said it may be slightly low currently due to the fact that I had a laproscopy  recently to remove the tubes, two ovarian cysts and scar tissue.

The other two hormones were low, which is as it should be. So the indications are that I will respond well to treatment. However, I had a low follicle count – there were only seven at my ultrasound in April. Low numbers indeed, for a numbers game. But Dr R said that I could try a cycle or two with my own eggs. It is worth a shot. No one knows what will happen, so I’m going to go for it.

But. Two things. I’ve been reading that LH and FSH aren’t the whole picture. These hormone levels can be affected by high oestradiol. So they may look as if everything is fine, when actually, the only reason they are low is due to an excess of oestradiaol, not due to normal functioning of the ovaries. And oestradiol wasn’t tested for.

The other ‘but’ relates to my upcoming appointment with the consultant at the NHS hospital. Regarding the outcome of my operation. I’m now worried that he will say ‘Oh no, you haven’t got a chance with your own eggs, those ovaries are plastered to your uterus!’. [‘plastered’ is a word that the operating surgeon seemed fond of, in describing the state of my lower abdominal cavity. Thanks.]

But we can only wait and see. Like a work colleague said to me the other day, everyone will give me their opinion, but at the end of the day, it’s my decision what treatment we decide to do. (along with Mr W, obviously). On that note, we have booked Mr in for his sperm retrieval procedure on 10th January. Striking whilst the iron is hot, as it were.

I’m soooo glad I have the appointment on Tuesday, as it will enable me to  leave work early on the last day, when my colleague on maternity leave is coming in with her baby. That will be a close one. I plan to leave before she arrives. I just cannot cope with sitting with her and the baby and the rest of the department, listening to three people’s leaving speeches. I have trouble enough as it is – I sometimes feel ‘trapped’ in the room where they do the speeches, the chairs and tables are those awful fixed, canteen style ones, all squished in together with no room in between. And it feels like everyone can see you. Ugh, agoraphobia, anyone?

Anyway, I am rambling now….I’m hoping for good things. It feels great to finally find out something a bit more positive, and to know that we could get started with our first cycle in the new year. 🙂

 

 

The Pause Button

6th December

One of the things I think is so unfair about infertility is the many decisions we are forced to agonise over. At every stage, as we find out more information, we are kind of suspended in an unnatural reality. Like someone has hit the pause button where normal, fertile couples conceive. A moment in their lives is protracted in ours, spread out to what feels like a lifetime. And it can be filled with hope, pain, numbness, fear…

And the rest of life just wants to carry on at the same time. Sometimes we join in and forget about the ‘freeze-frame’, other times we stop dead and feel how stuck we are.

On Friday we will be getting the Day 3 blood test results. I am already skeptical about the possibility of using my own eggs, because my ovaries are stuck to my uterus with endometriosis scarring. I just don’t know how the eggs would be retrieved from such an awkward position, never mind what the hormone levels are. And I’ve purposely stayed away from forum threads etc because I’m wary of the success stories. Another woman’s severe stage IV endometriosis might look completely different to mine, meaning success for her and failure for me.

As regards using donor eggs? I can’t fool myself into thinking I don’t need to give it a second thought. Even my mum, bless her, accidentally blurted out ‘oh but it wouldn’t be yours’ when I touched on the subject a couple of weeks ago. Mmm, that has got me thinking…How could it not be mine? I would be pregnant, I would carry the child inside me. Nourishing it in the most physical, closest possible way, inside my own body.

I haven’t got my head around that one yet. It is an example of one of the decisions that can face those of us struggling with infertility, that is so unfair. The fertile people not only get to conceive naturally (and don’t have to pay thousands of pounds to do so), but they get to avoid having to think about choices like this. My mind has been to such strange places throughout all of this. With the blood test results looming on Friday, I don’t think this is one of the times when I can just join in with real life. I’m stuck on pause again!

 

Back to normal

November 2016

It’s now (almost) Tuesday, nearly three weeks since my operation. I’m going back to work on Thursday, and I’ll be glad to get back into a normal routine.

I’ve had plenty of ups and downs recently. I spent a good few days feeling extremely anxious about any possible social engagements over the Christmas period. The ever-present social anxiety coupled with the decision to drink or not drink at events; all of which feels even more unsettling when I think about it through the filter of our infertility struggle, which is the biggest thing going on in my life right now.

Last week my friend came to visit me – the one with the two year old. She didn’t bring her along though – I just wanted to have some time for the two of us together. I had been pulling away because I was finding it very hard to relate. I was focusing on our differences rather than our similarities, and last weekend I decided I needed to try and put that aside, and spend some quality time. She is my oldest friend, after all! So we had a lovely afternoon. I did feel uneasy and lost when she had been talking about playgroups and potty training and waiting lists for schools for a while – a kind of sinking, ‘oh my god this might never be my reality‘ sort of sadness. But it was OK, we moved on to talking about other things. I’m really happy it went so well 🙂

On Thursday I went to collect my sicknote from the GP, and as I was pulling out onto the main road, I passed my Dad, who was walking to the chemist. I won’t go into all the details but it’s impossible to stop there, and he had more or less reached the chemist, so I went on my way. But he wasn’t wearing a coat! I flicked the indicator stalk button thingy and it told me the temperature outside was 7 degrees. Now, Dad had lost his coat and hat somewhere a week or two ago, but he went shopping with my sister, mum, aunt and cousin to buy a new coat. He is suffering from short term memory loss and it makes me so sad. I find myself wanting to protect him. I popped in to my parents house on my way home from the GP. Mum was busy in the garden and I said to Dad, ‘where’s your new coat, Dad? It’s 7 degrees out there and I saw you walking to the village with no coat on!’. He kind of said ‘Oh, I’m sorry, I should put it on, I don’t want to upset you’, and he gave me a hug. I just dissolved into tears…Lots of emotion.

He sat me down at the kitchen table and made me a cup of tea. Mum came in from sorting the chickens and we talked about stuff. Dad showed me the new coat, plus an anorak with a fleecy liner (that mum doesn’t like). He felt the new one should be for best only, as it cost a lot of money. But I explained it was to replace the lost coat, which was for everyday. I made sure he didn’t just think it wouldn’t go with his casual clothes. So hopefully that’s all sorted, he’ll definitely be wearing a coat from now on!!

I also told Mum about Mr H having come home from the pub a couple of weeks previously, and having a huge argument with me. A few days after the operation, and he started the argument by blaming me for the state of the kitchen! Which was in a mess, but I’d already decided I would clean it up the next day. Well, he was even talking – not in so many words – about divorce. I didn’t know what to do. I really thought that might have been it. The argument changed to the subject of IVF. Apparently I had been ‘ramming it down his throat’ for far too long and he’d had enough. A little while after that, he burst into tears and said he just wished we could do it naturally. He’s worried and afraid what will happen if it doesn’t work. I really needed to get all that off my chest, but I’m so glad I waited until everything had well and truly blown over before I said anything to Mum.

So yes, a bit of a rough ride so far. But I think I’m settling down again, emotionally. I’ve got a lot to write about in future posts, as various thoughts have been floating through my mind. I somehow have an urge to understand much more about endometriosis – about what causes it and how to minimise it’s effects, if that is possible. I feel like it is a part of me, it’s just something that my body is doing, and rather than somehow blank it out of my thoughts I need to know it better.

I’m also trying to let go of the idea that I know what my future should look like, and let go of trying to control the outcome at every stage. I do know what I would like to happen, and sometimes that does get the better of me and I worry about how I will cope if things don’t turn out the way I want them to. But I know I need to be open to all possibilities, otherwise I risk not seeing the good things in my life – the things that might not match my hopes and dreams but are blessings nonetheless.

Post Op

It’s a week and a half since I had the operation. Luckily they managed to do what needed to be done through laparoscopy, rather than laparotomy, so I am recovering very well. I did stay in hospital overnight, as the op was mid afternoon. I was grateful for the overnight stay really, apart from the fact that the nurses were VERY loud and I didn’t sleep much until they gave me some morphine syrup(?) half way through the night.

One thing I didn’t cope with very well was overhearing plenty of conversations between the nurses about pregnancies. I won’t go into detail, but one of them was expecting, and what was happening to another patient in a separate room provoked a discussion between the nurses about all things relating to the announcement of pregnancies etc. Now, I had already felt upset and alone after the consultant had spoken to me the day before. He basically said he thought I had a frozen pelvis and didn’t know if he could carry out the procedure successfully. Then, there was the pregnancy test and the cheery, relieved way that the nurse told me it was negative. And now this. I lay there on my own, listening to the nurses talk about pregnancy and babies, wondering what the surgeon had found when he operated, wondering if I will ever be able to carry a child, even, will I ever be a mother?

I was given a card to fill in about my experience of the hospital, and there was a box on the back for comments. I filled it in with something like what I’ve just said above. I’m not going to stay silent, I thought. Not that I wanted to blame anyone, it was just that I wanted my perspective to be known. I gave it back to the sister and then a short while later she came to me and closed the curtains. I thought at first that she was going to have a go at me! But no, she said ‘I’ve just read your comment card, and I can only apologise’. She was lovely to me. I was so grateful. She told me she’d had her little girl through IVF so she was fully aware of all the doubts and fears around infertility. I felt better, I felt less alone.

The overnight stay also meant that I got to see the consultant on the rounds the next morning. Firstly, the registrar who was in the operation, and a consultant who wasn’t, came over with my file. I averted my eyes from the photographs! The consultant said they had removed the fallopian tubes and some cysts from the ovaries. Also the endometrial polyp was removed from the uterus. Scar tissue was successfully removed, so that the uterus was now moving freely. So far so good. The thing is, the cysts will keep coming back on the ovaries. It seems there will be no let-up. More bad news…the ovaries are stuck to the posterior of the uterus. Hmm. So will I have to use donor eggs for IVF, I asked? (I know these are not IVF specialists I’m talking to, but at this point I want any scrap of information or opinion I can get hold of!). The consultant (who wasn’t in the operating theatre, bear in mind) was very jolly and said ‘Oh, you are young, you should definitely try using your own eggs!’. And the registrar (who was in the op) had a very serious expression and didn’t say a word. Now, we all know I’m not young in reproduction terms – I’m 37. And my ovaries…stuck, and with cysts. That didn’t sound too great to me, but nevertheless; I let myself feel good about the possibility of using my own eggs.

Those two ladies left, and a bit later Mr D, the consultant who did operate came over, No file or anything, I think he wanted to just come and see me before I went home. I was dressed and waiting to be collected at this point, so we sat side by side on the bed. He said it wasn’t as bad as he thought it was going to be in there (!) But he warned me not to wait – to go straight to the private clinic to start IVF as soon as we can. No argument from me there. In fact I’m glad he said it, in a way, because I was able to tell my husband, who would otherwise be thinking that there’s no point going until after Christmas. He doesn’t know that reproductive hormones wait for no man (or woman). About the ovaries…could I use my own eggs? He said its really a problem of being able to physically get at the eggs, considering the position of the ovaries, and the recurrence of the cysts. I’m thinking maybe another ultrasound at the private clinic might be a good idea, just so we know what we’re dealing with.

So I’m home. All sorts of things have been going through my mind, as you can imagine. One thing I do know, and I am trying to do something about, is the fact that I need to be prepared for the possibility that none of this will work out, and perhaps I wont end up being a mother at all. It’s a bit scary. But I think that part of the way to deal with that – and something that I need to be doing anyway – is to really look at my self-esteem. It has never been that great, but now more than ever I want to actively try to improve it, to believe that I am a worthy person, that I’m loved and loving, and I need to recognise that this life of mine, well it’s the only one I’ve got. I’m all I’ve got, and I don’t want to waste anything by wishing I was different. I’m so fed up of feeling I’m on the outside of life looking in whilst everyone else has it all figured out.

If anyone has any tips as to what has worked for them in terms of improving self-esteem, please share – I would be most grateful 🙂

Surgery

I’m in hospital, waiting for surgery. The consultant has been to see me. As usual, everything seems much more serious than I realised.

I’ll hopefully be having both fallopian tubes removed, but the surgeon said he may have to open me up to do this, as it may be too difficult with laparoscopy. Apparently everything is very stuck down, making removal of two small parts very difficult. He may not be successful at all.

I got the impression from the consultant in January, that he had managed to do quite a good job of removing the cysts and clearing a lot of the endometriosis. But here I am, looking at having a laporotomy, and even that might not work.

Oh and I needed to hand in a sample earlier, for a pregnancy test. The nurse who did it just walked past my bay and said, looking relieved and laughing abit, ‘negative’. How much nicer it would have been for her to come and speak to me properly and just explain what test had been done, and the result, with no sigh of relief.

I want to cry, but I’m on my own, there are only nurses around. They don’t seem to understand, they just have to get people into gowns and off to theatre. I’m not going until 3 o clock, so I have a long time to wait and I’ll have to stay in overnight.

I’m going to try and keep calm, but I really just want this to be over.

Good news

Our friend is fine:)

I also have more good news…at work on Friday I did my normal routine of taking my phone out of my bag and taking it off silent, putting it in my pocket. I was doing this partly so that I would be immediately aware of any updates on our friend, but also because it has become my little ritual, hoping for a phone call about my surgery. Well, what do you know, it actually rang! The words ‘private number’ made my heart race a little bit, and I recognised the voice of the lady from the booking department straight away, as I’ve rung up about three times during this almost six month wait. She said she had two dates available – the first was a very last minute on Monday! I said I would love to have that one but it’s not really fair to my work colleague, to drop everything at such short notice, and so I’ve got 26th October. I’VE GOT A DATE!!! AT LAST!!! It arrived in writing this morning 🙂

I’m feeling motivated to improve my health before surgery. This time I have a huge advantage in that I’m not ill like I was last time, prior to the operation. I’m well, and I want to do all I can to be ready. I can now see what is hopefully the ‘beginning’ of the process, and it feels a lot more tangible compared to the aimless waiting. There are a few things like yoga and meditation that I’ve been wanting to try, so this will be the incentive I’ve been lacking. I am (but trying not to be) a little bit excited!