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Is there hope?

(8 Posts)
Dot457 Mon 16-Sep-19 14:13:01

Hi everyone. Looking for some friendly advice from someone or people who have been in the same or similar position, it's quite long winded so please bear with me!

My whole life since starting puberty I have always suffered with problems in my lady region. I always knew I was different to my friends as no one used to have the same pain or periods like I did. Fast forward to my late teens and early 20's turns out I had Polycystic Ovaries, I thought, it's fine and minor and don't want children yet so not an issue for me! A couple of years went by and I was suffering with horrendous pain down there, I had numerous scans on the NHS, internal and normal, each scan said yes you have a cyst there but nothing big enough to worry about, cutting a long story short I ended up going private through a scheme at work as I couldn't even bend down or cross my legs! Turns out I had a 16 cm cyst which was taking over my left ovary and left tube, after coming around from Laperoscopy, they said that most of my left ovary was taken away but won't prevent any infertility issues etc, great for me, pain free, all checked over, nothing to worry about eh? A couple of years later, I met the man I wanted to share my life with and have children. After nearly a year of trying and using ovulation sticks we went to my GP and we were instantly referred to our local fertility clinic. I had a 3D scan and it turns out, I have a unicronate uterus (Half a womb) meaning the right side of my tube was not attached to anything and my left side had severe scarring meaning they think my left tube isn't working at all. They also suspected Endometriosis which runs in my family so that wasn't a shock. I was obviously devastated and I had to have another Laparoscopy and Hysteroscopy to have this confirmed, had my left tube tested and my worst fears were realised when I woke up. I'd had to have my left tube removed, I had half a womb, no working left ovary, cysts on my right ovary and endometriosis, literally nothing worked. After recovery they said given the circumstances we could start IVF straight away, we were over the moon that we were given this opportunity.

We went through the long process, as we had to wait longer due to numerous cysts coming and going, and with only one working ovary we managed to fertilise 4 eggs! I'll never forget how happy we were that day given the circumstances. Unfortunately after a few days 2 died and one became abnormal which left us with one left. They proceeded with the Embryo transfer and I actually became pregnant! However, I started to bleed a couple of days later and our worst fears were realised, we were having a miscarriage. They said once my body was recovered and I'd had a couple of periods, that we could proceed again, but due to our area, we were only entitled to one funded round and had to fund the rest. I'm sure there are 100's of people that can sympathise with that situation, we got in touch with our local MP and she backed us all the way, and asked us to write a letter to our CCG and we can attempt part funding but it might not work. We are still waiting to hear back, the letter was only submitted a few weeks ago, but after we'd suffered the miscarriage we felt like we were fobbed off and that was it, no after care was given.

This was back in March, I called up last week to try and get in for a scan because I've been experiencing discomfort, they admitted that I should have been asked to go back for a baseline scan, however they won't see me at all now because I have to be an active patient going through IVF?! But they're the ones that should have given me a scan in the first place and I feel like I'm just being completely fobbed off, they were great throughout the whole process, but now I just feel like a number again and like I'm no use to anyone? I have good and bad days but hearing the slight bit of bad news literally sends my head into such a sad state. I am 26 so I appreciate people think oh your still young however... I went to my GP the other day about this stuff as we feel stuck on where to go now, and although he was great his words were "Time is what you need, but time is not what you have"

I appreciate the honesty, but what am I supposed to do? I wanted to ask you all how your experiences have been going private compared to NHS? We have looked into lots of different private clinics but it's like I'm scared that we're going to spend money to potentially not have the same care and treatment. The clinic said they would change the dosage of treatment that I was on before as they think if they up my dose I'll hopefully get more eggs! But I'm scared this wont be put in place if we went elsewhere?

Thank you for any advise, tips and opinions in advance!

Dot457 Tue 17-Sep-19 13:57:38

Bump, really hoping for some guidance sad

Ginger1982 Tue 17-Sep-19 14:14:41

I only have one ovary after having a massive cyst removed when I was a teenager. I don't have PCOS but DH and I needed IVF ICSI to conceive DS who is now 2.5. I was 34 when he was born.

We initially started down the NHS route but tbh it felt a bit like a conveyor belt. The consultant rushed through our appointment and we left feeling as clueless as when we had gone in. We were in the fortunate position to be able to fund our treatment so elected to do so. I have to say that the experience was great. We were able to choose appointments to fit around work and we definitely felt like more than just a number. I can't say that if we had continued with the NHS that it wouldn't have been the same though, it might even have been better, I just don't know, but we don't regret our decision.

We've since funded two more unsuccessful rounds and currently debating whether to try one final time.

Any clinic you go to will start from scratch and discuss things with you in detail before any treatment begins. Yes, it's a lot of money with no guarantees but we have no regrets.

Cariad82 Tue 17-Sep-19 14:19:55

Hi @Dot457

I'm not sure I can say anything helpful but your post made me really feel for you and also really empathise as I've recently had a diagnosis of stage 4 endo after 12 years of symptoms, 4 different gynaecologists, fertility specialists and 3 failed rounds of IVF. I'm 37 now and so I know how it feels to feel like your time has been wasted and it's running out, and to feel the constant disappointment and like you're just a number to people. Sorry you've had such a rough time.

What I would say is that we have had 3 cycles in a private clinic (one paid for by the nhs and the others paid by us) and found the care and communication to generally be very good. And waiting times are really short compared to NHS. When I started with them I had my initial consultation a couple of weeks after I first rang them and then started my first cycle about 3 weeks later. I just feel like I have so much more control over what happens with them that I do when I have any NHS treatment. And I'm a bit of a control freak!

I do though think it's really important to do all your own research and try and understand your situation and treatment options as best you can and don't be afraid of asking the doctors for what you want. If you have seen a private specialist who thinks your drugs should be upped then if you go back to the nhs for another cycle tell them this and tell them you want to do it (if that's what you want) and if they say no ask for proper justification why not. If they have a solid reason then it's worth considering their view but if not and they're just following a standard protocol or something you have a right to have your request taken seriously and can go down the route of an individual funding request to get it, where a panel will have to consider your request.

Have you looked in to finding options like multi cycle packages through access fertility where you get refunds if successful?

Cariad82 Tue 17-Sep-19 14:27:12

I would also echo what @Ginger1982 says about the good experience with private clinics - I've always felt like they've taken the time to be thorough and they've been so accommodating with fitting appointments around my life. For example I am very difficult to scan (which I now know is due to my ovaries being stuck down by endo) and when I have gone in for scans before I have had 3 different members of staff try to scan me, they've swapped me to different machines, they've let me go and drink water then wait around and then tried to do a full bladder scan etc - really taken their time to make sure they've got it right and not made me feel like an inconvenience or rushed things like I feel they might do at an nhs appointment with a tight time slot

Dot457 Wed 18-Sep-19 14:52:44

@Ginger1982 and @Cariad82 thank you both for your replies!

@Ginger1982 by the sounds of your story, even I would recommend doing IVF a final time! I'm so glad to hear you had that experience, it scares me so much, we didn't ask to not be able to have children naturally which is a stress in its self, never mind having to fund it. Can you recommend any private clinics? Assuming you are in the UK. We looked at one in Manchester as we are in Leeds but there was an initial fee for a consultation, is that normal?

@Cariad82 it angers me that you had to wait so long for answers! I'm sorry you have been through that for so long! Thank you for sharing your experience, the clinic we used also accepts private patients, it costs double more to what we've had quoted to go private, but it's all we know and can't knock the whole process apart from after it was all "over" if you know what I mean! What was your private clinic if you dont mind me asking? I wont lie I do struggle to fully understand every part of whats going on with my own body and how IVF comes into that. I try to do as much research as my brain will take haha! We once saw an advertisement for funding options, I think it was actually access fertility, however to our understanding there was a slight catch where you would only qualify if you were likely to conceive and unfortunately, as were not very likely to have that happen they would decline us. Thats what one of our consultants told us anyway! It's crazy how those small things like asking you to go for water and wait a little longer, makes you feel more cared for etc! Thank you both so much xxx

Cariad82 Wed 18-Sep-19 16:12:20

I'm at Care in Manchester. We were lucky to get our first cycle there paid for by the NHS so that covered out initial consultation and tests. Then when we went back as private patients all that didn't need to be redone. The initial tests last 2 years I think they said.

Yes access fertility does have some eligibility requirements. I didn't qualify for it at all after my poor response and failed cycle. They have different levels of it depending on your individual circumstances though, so for example you might not qualify for the normal full refund if it doesn't work package but you might qualify for the 50% refund package. It's worth giving them a call just to ask - don't just take what your doctor said as gospel. I had a 5 minute chat with them and got all the info I needed. The fact that you actually got pregnant last time might be on your side, you never know. Because I didn't qualify for Access Fertility and because of my poor response etc Care let me have a 3 cycle package directly through them. So we paid £10k for 3 'natural modifed' ICSI cycles (basically the same as normal IVF but with less drugs because my body doesn't like a lot of drugs), which includes embryoscope and embryo glue. Then we have to pay separately for the drugs on each cycle. They cost about £1200 per cycyle because I'm on quite low doses. This is a non-refund package though so if I'd have got pregnant first time we would have lost the rest of the money. I'm about to use the third cycle though so it's paid off. So you could ask about something like that maybe. You'd still have to pay for initial consultation and tests they might need though, before deciding on treatment and a finance package. And then drug costs per cycle can vary depending on the tweaks they might need to make to your protocol each time and how long you end up taking them for. It can be a bit unpredictable so you need to factor that in when thinking about costs.

You could ask them if they will accept test results from elsewhere though and then either use the ones you've already had done at your clinic, ask your GP for any extras they might want or see if you can have the tests they want done privately for cheaper.

That price for an initial consultation sounds about right by the way. Care do a free visit where they will walk you around and answer basic questions, but to see a doctor you will need to pay. It all massively sucks, I know.

If I were you I would call Access and check if you would be eligible. If you aren't I would then choose a couple of clinics that you think you would like to use and contact them asking to find out about any funding options they do if you're not eligible for Access. At least get an idea of where you would stand.

I'm also wondering if you might be eligible to do egg sharing due to your age and get a discount that way? There's nothing actually wrong with your eggs themselves is there - more the mechanics of it?x

Ginger1982 Wed 18-Sep-19 17:46:52

@Dot457 I'm in Glasgow and I used GCRM who I think might have other branches but not sure if they are outside Scotland. Yes there was an initial consultation fee which I think was £250. Also treatment had to be paid for up front. I'm not sure if different places might do different deals though.
And thanks! We are thinking of giving it 6 months and then making a final decision yay or nay.

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