Shell-shocked - non-functioning Fallopians, NHS eligibility worry

[Auburn]

Hi, I am writing this in a bit of a shocked state. I've gone from pretty much everything firmly believing I have exercise induced amenorrhea to being told the only way I will ever have my own baby is via IVF in the last 24 hours. My story:

Came off the pill last May and after an initial bleed nothing happened. I'd been on the pill 10 years so assumed a bit of time was needed but after 6 months of nothing I went to my GP who (reluctantly!) ran tests which all came back normal. I wasn't that waiting another 6 months, when I was clearly not working properly, was on so I used a private health insurance policy to get further investigation.

My ovaries were showing good, a multicystic but by all means ready to go. My uterus is slightly small and tilted but otherwise seemed okay. It was at this point that the exercise-induced amenorrhea was batted around - I am a keen long distance runner and ran 4 marathons as well as other races last year. It seemed the consultant thought the stress on my body was holding things back and hypothesised that reducing training significantly and either Clomid/injections to kick start things was the answer but first, to get these on NHS, as my private won't cover fertility treatment, I needed a hysteroscopy and laparoscopy to check for endometriosis and make sure Fallopian tubes weren't blocked.

I was doubtful about having the op; deep-down I believed that if I just lay off the training completely 6 months things would get back to normal, but I went ahead and had it yesterday.

She found some mild endometriosis which she burned off but the big surprise and show stopper was my fallopians. They are not blocked but the peristaltic motion needed to get the eggs from a to b was almost non-existent. Even if I had been ovulating, my body was likely reabsorbing the eggs as they hung around in the tubes so long, and if by chance I did conceive the chances of ectopic pregnancy are high. She rated my chances of natural healthy conception in the single figure %s. IVF is my only real shot.

To say I am shocked doesn't quite cover it. She said I am eligible for NHS cycles and we can get going straightaway, I am due an appointment in a couple of weeks.

I have to read up about things and I checked out my CCGs eligibility criteria. It states that both me and my partner must be childless. To everyone but us, our parents and my consultant we are but 20 years ago when he was just 15 my husband may have fathered a child - he did sign the birth certificate but his girlfriend, who was 16, was a known cheater. She left him and after only a couple of times meeting the baby she shut him out and he has had no contact or contribution since. He was just a child himself and the whole thing had a massive effect on him for years after. We have only spoken three times about it in the four years we have been together, the most openly yesterday when I came across the criteria.

I did a summary of this to my consultant at my original appointment and she seems like a very experienced trustworthy person, who I don't think would have told me so confidently that we were eligible without being sure. But I didn't find the childless thing until after. I have left a message for her to call me as I am obviously concerned.

Does anyone have any experience of any of the above to share with my?? I am lucky to have one friend who had her children by IVF but this was 17 years ago so things have probably changed (not the emotions I imagine, of course).

I have questions about many things.

Could we be exceptional circumstances for IVF? Given my so low chance of natural success and the fact that we have had no involvement in that child's life (and that there is question of if they really are his child)...

I have been looking at success rates and finding about 32% for my age range (I am 27). Assuming that the only thing wrong are nearly non functioning Fallopian tubes and we have good eggs & uterus & sperm, is that % likely higher or is just the chance that the embryos will implant that applies to everyone?

Am I right in thinking that, if we say we're lucky enough to have it NHS and be successful with one child first time round, we would no longer be eligible and have to self fund if we wanted a second?

That's probably just for starters. They are the biggest questions that stick out in my mind at the moment. Last night I stayed up till 4am watching rubbish TV to distract me and still ended up crying myself to sleep. I can already tell my husband is chewing up inside that one mistake when he was a child himself 20 years ago could make this journey a lot harder.

Thank you for taking the time to read this xx

[Madcatlady55]

Hi auburn, in my opinion the fact that your husband was 15 when he potentially fathered a child shouldn't count at all. He was below the age of consent so shouldn't even have been put into the birth certificate. As it would now be impossible to do a dna test, if it was me I'd just keep quiet.

If you're lucky enough to get plenty of good quality embryos, you can freeze some for extra tries or future children. Not sure about the nhs costs, but there will be storage charges and future treatment charges. I believe the current shelf life for frozen embies is 5 years.

[Hidden]

Hi I've come across this unfair rule first hand. I had my son when I was only 16. My husband came into our live when my son was 11. He has no children. Despite my husband being childless the NHS refused any funding for IVF. We have unexplained infertility and we were discharged from an NHS clinic nearly 2 years ago with its trying or IVF and we won't fund it. It is wickedly cruel such a rule is allowed to exist. I think if one of you has not got a child then the NHS should honour that. Can your husband track down this child and get a DNA test? Coz if he isn't then that could be the difference between getting funding or not. You can try and appeal against it and on this website there are templates that explain how to go about that. Or you could look into egg sharing where if you are willing to share half your eggs you get free/seriously reduced IVF. Or maybe look into IVF aboard as its so much cheaper than the UK. In Czech Republic it's only £1700 and that's ICSI included ( instead sperm finding an egg they select best sperm and inject egg with sperm) I think some of the girls on here have had IVF aboard they might be able to help you and give you lots of info.

I wish you the very best with whatever you decide and a beautiful BFP good things come to those who wait 😊💕 x x x

[Hopeful1982]

Hello

Sorry to hear this. It's such a shock to find out you need IVF to conceive and crying is (unfortunately) perfectly normal. If you're finding it difficult to sleep try a class like yoga, tai chi, or Pilates which may help (tai chi worked for me). A technique called 7-11 breathing also helps (breath in for a count of 7 and out for 11) to calm you. You may also find it helpful to speak to a counsellor - I definitely did.

I have to say if you can get away with not disclosing the fact your husband 'may' have fathered a child then I would. If he has no contact with the child how would anyone ever know? If that's not possible, as I see you've mentioned it to the consultant already, then check the fertility fairness website which should have the criteria for your area. If you are denied funding on this basis it would be possible to appeal. But stressful and no guarantee of a positive outcome.

The stats apply to everyone in your age group going through IVF do you are right that your chance of success could be higher if the sperm and eggs are good.

In relation to having a second child it is likely you would have to self fund as the entitlement to NHS funding seems to fall away once treatment is successful.

Take care of yourself and good luck x

[Anjel2]

Hi,

I agree with Hopeful and in this situation I don't think I would disclose the fact that your partner may have a child that he has no contact with. As soon as you admit he has a child it's highly likely funding will be withdrawn or you will have to fight to get it. Most NHS Trusts only give you one or two cycles anyway and it really is down to luck. It's widely known that couples sometimes require 3 or more cycles. Although this is not always the case so please don't take it as a negative. I'm now 39 and 24 weeks pregnant via IVF and it was my first cycle. So it can happen!

Once successful you will have to pay for further cycles if you wish to have a second child, but you may get the option of freezing some embryos if you produce enough.

Take your time to get a handle on everything and most definitely see a counsellor, either individually or as a couple. It's very important to talk and process your feelings.

Otherwise just keep positive, you have options available to you and this isn't the end of the road it's just the beginning.

I wish you the best of luck on your journey x

[Auburn]

Thank you for your replies. I have checked back over a letter I had from the consultant that both summarises the situation that my husband may have fathered a child and still says that we are eligible for NHS treatment. I would hope that that would mean the consultant has a experience and a good idea that our circumstances would be acceptable??

I am not the sort of person who could have not fully disclosed our situation, even though I appreciate it may make things easier. I hope that we can appeal and the uncertainty and complete lack of relationship will work in our favour.

As for contacting and getting a DNA test? Out of the question, I would rather pay then put my husband through that, I fear a whole can of worms could be opened that would just make a difficult situation even worse.

If we are eligible, we do get up to 3 cycles. If we are not eligible then we will have to go down the self funding route. My parents will likely be able to help us with this.

We are the beginning of a scary journey. I think the shock is so much as I have read many stories about all the processes others have had to endure before IVF is recommended. It is scary that there is so tiny a chance of natural success, that this is it. Thrown in at the deep end or something.

Thank you for the sleeping tips. I am normally a good sleeper, hopefully that will come back as the shock settles. Still recovering from the lap so off the yoga but I am trying to be more productive and reading instead of stewing or watching bad TV!

Thank you all again xx

[Hidden]

I can understand that would be too upsetting. So cruel any woman could deny a child the right to see their father (without valid good reason) I always allowed my son access to his dad (even tho he is a waste of space and has let my son down many times) I feel so sorry for that child and your husband. I hope maybe one day that child will get in touch and want to start a relationship with your hubby. 🙏I'm sorry if my comment touched a nerve was not my intention at all.

With my situation we were told on our first appointment with the nurse at our ex NHS fertility clinic that we would not be eligible for IVF. We knew from the start. So the fact you weren't told that means you may well be entitled to IVF funding I'm sure a consultant wouldn't say if you weren't. Couldn't say you were if you weren't. I'll keep my fingers crossed for you. 💕

I can remember feeling very shocked when I was told it was trying or IVF. I kept thinking it was very extreme to go from trying to IVF. It will feel better in time and each step you take brings you closer to your baby. Good luck with it all 💗 x x x