PCOS, clomid, no tubes, ivf

[TeaVee]

Hello.

Not sure why I'm posting really, I think I'm just exhausted and want to find people in a similar position.

I'm 24, and I started my first cycle of clomid in December 2017. As I have had two miscarriages and two ectopics. Right tube removed, left tube saved. The first try of 50mg was a success and I became pregnant.

My hcg doubled nicely, 25,57,110 (I was in hospital for pain so had these tests there) and because of the pain I had a scan which didn't show anything as it was so early approx 4 weeks.
I was sent home on the 13th January 2018 and told to come back on the 22nd January for a scan and bloods. My scan showed something on my left side but they didn't know what it was but an ectopic could not be ruled out. I had bloods taken and they had only gone up to 178 (9 days after my previous bloods) so something wasn't right, but they didn't know if it was a mc or ectopic as I was having brown bleeding upon wiping.

Well the day after I was rushed back to hospital with very bad pain, and yesterday they did a laparoscopy to see what was going on. When I came round they confirmed that it was an ectopic and they had removed my remaining tube.
I now have no tubes, and my only hope for finally having a baby after 4 years of ttc is IVF.

I'm with a fertility doctor who I see in February so he will refer me to ivf, and I've already checked my local ccg and there ivf policy so I should be entitled to 3 full cycles. Which I want to do in a few months when I've give my mind and body time to recover.
But I am so nervous that I only have 3 more chances to conceive and have a baby and I'm still quite young in the grand scheme of things. I've also read that you can still have an ectopic from ivf in the stubs of what's left of the tube as part goes into the uterus and the only way to remove it fully is to remove some of the uterus which would make pregnancy a bit more difficult. (This is information from my doctor this morning when I was discharged from the hospital.)

It's only just turning 24 hours since my surgery and I feel so numb. It sounds strange but I don't feel like a woman now that I cannot conceive naturally ever again and have parts of my missing, and the pain that I am in from the surgery is the only thing I have left of my baby.
I feel deflated from having 3 ectopic pregnancys and deflated about how cruel it was that I conceived first try with clomid and had my baby taken away from me again.
As I have also read that clomid can increase the chance of an ectopic pregnancy, so I'm annoyed and upset my fertility doctor didn't warn me about this and it put my life at risk.

I am lucky though, I do have a beautiful daughter, I was 18 when I had her but it was to a sexually and mentally abusive ex and my new partner who has taken her on is the most amazing person anyone could ever ask for, and I feel awful that I may not be able to give him a child of his own biology after he has helped me so much with my daughter. I feel like I'm not worthy if I can't do this for him as it's the most natural thing in the world, and as much as I love my daughter, it sucks that I got pregnant so easily with no issues to the person who is her father.

My partner has said that even if we don't ever conceive and have a baby he said even when we are 60 and all we have is (anonymous) he will still be happy as he thinks of her as his own. But he's young, and I feel sick at the thought of putting him through not having his own biologically. He's 23, today actually, and I love him to pieces and he's very supportive. But he wants this as much as I do, but if I can't then I don't want to hold him back from having his own family.

He says I'm being daft, that he loves me and he's not going anywhere, but I don't want him to resent me in the future.

I'm just rambling on now, but I just can't get my head around it all. My grandad died last week and it's his funeral tomorrow too, I was very close to him and I'm just filled with such hopelessness and numbness.

Has anyone felt like I do? Or had ivf with no tubes? Multiple ectopics? Etc

Anyone?

No experience but it's not 3 attempts at becoming pregnant.... It's 3 NHS funded attempts. So you can self fund 😊

I can't self fund, I have absolutely 0 savings due to things keep cropping up, and private is so expensive. So after the NHS funded I probably won't get another shot at it. Maybe in 6/7 years but I'm conscious of my age, as the older you get the lower the expectation. I think 35 is the cut off point for ivf is it not?

I don't know, my heads a bit of a mess.
Thanks for replying though :)

What Ccg are you with? I am considering moving there...

They'll find even though you have a child?? That's rare. Like a unicorn...

I'm in Manchester.

northwestcsu.nhs.uk/BrickwallResource/GetResource/b62b52e4-89f3-4f81-8007-a7a4a24b050d

These are our guildlines by the ccg in our areas. The area isn't about where you live, it's where your doctors are.

But yes, I can still have ivf treatment even with a child from a previous relationship as me and my partner do not have one together and he has none from a previous relationship and there is now no way that I can conceive without ivf.

The cut off age-wise for ivf also depends where you live. It tends to have higher success rates below 35 approx. You have time.

I am really surprised that you will get NHS funding even although you already have a child, as said above it's VERY rare. You are 24, you have years to save up to self fund if needed. It would be a different story if you were in your 30s. Good luck. Xx

Honestly I posted to find someone who feels similar in regards to having multiple ectopics, and having no tubes. Just someone in a similar position, and although I appreciate the replys, you just seem to be hung up on the fact I'm entitled to NHS ivf in my area. Which isn't why I posted. And I'm sorry it's not like that for a lot of people. But it goes off what ccg your doctors comes under. :(

I'm sorry if that comes across as a bit rude. But I just wanted to find someone who understands what I'm going through so I don't feel so alone. Today is my grandads funeral and with all that's happened this week, I don't know where my head is and so far I feel judged because I have a child already from a previous relationship.
Perhaps posting on a forum was a mistake.

Hi TeaVee, I haven’t been in your same position, but I just want to say I’m sorry you’re going through such a tough time and that you feel so alone. You’ve had a lot to deal with in a short space of time, and that can be a killer - please be kind to yourself and try to take one day at a time.

Most of us go through things at some point in their lives where we feel like the only one having such an awful time - I’ve definitely been there myself. But you’re not alone, and any one of us can find ourselves in a position where something very difficult happens to us. Can you speak to a trusted friend or family member about how you’re feeling?

It sounds like you have a lovely partner who loves you. Sadly we don’t always get exactly what we want in life, and it sounds like he’d rather be with you and your little girl, and try IVF, than have a chance of a baby with somebody else.

I’m very sorry about your grandad - sending you good thoughts for today.

I didn't have multiple ectopics, just the one, and it was after many years of TTC. I also have PCOS, and one ovary is very badly affected whereas the other seemed ok. I lost the tube that was on the same side as the good ovary... so, I kind of know how you feel.

It seems hideous right now, but in time you will see the IVF as your chance to have a baby, and you have to grasp it with all your might and give it everything you have. You will get there. For now, be kind to yourself. An ectopic is traumatic, so please take some time to grieve and process what has happened to you.

After the IVF referral I felt fine, actually, because even though this was my "only chance", and it was a chance, that I wouldn't have had if it wasn't for our blessed NHS (for all its faults, I am so grateful to now be pregnant after IVF). You have to look at the positives. Without IVF your chances are 0%. With IVF, they are >0%. So that's got to be good! Plus you're young - you may not have savings now, but you might in 5 years time, when you'd STILL be young. All is not lost.

Your partner sounds fabulous. Perhaps your hospital could refer you for some counselling? I was offered it after my ectopic; I would suggest you take it up, it might help you process all this.

Sorry about your grandad. Hope all goes as well today as these things can go.

P.S. I would get your GP to go through the access criteria with you. GP can help you make sense of things, eligibility, referral times, tests and processes etc., when hospital consultants often only rush through.

Thankyou for all your replies.

I managed to get through the funeral yesterday, and today I'm just taking a bit of time to process things.

Yeah I agree that even though it's not easy only being able to conceive via IVF at least there's still a chance, and your right about savings, I think I'm more preoccupied with the here and now and getting so caught up in the what ifs and my sorrow that I'm forgetting to look at the bigger picture. My partner is still being supportive, and I do have a daughter already even if she wasn't from the best of circumstances, I still have her and then there is always the chance IVF may work and your right, a chance is better than nothing and when it's all you have, you have to grab it by the cahoonies. Aha.

I can't really speak to my family much about the ectopic, but I've been speaking to my partner about it, and I asked him if it would be okay if we leave IVF for 6-12 months, because I want time to recover physically and emotionally, I was worried about mentioning it to him or he would take it the wrong way but he's on the same wavelength about it all. I think in our sadness and grief we forget there's another going through it too.

We have been ttc for 4 years now, and it's been a very long heartbreaking journey, so together we have decided to take a step back, and enjoy ourselves as we are and improve on what we have already before going down the IVF route, so that we've had time to grieve and heal and just become stronger as a couple and unit as I imagine IVF itself can be very stressful.
I know I'm only 24 right now, (25 next month) but I feel a lot older than I am, and feel like I'm running out of time, is that just something that happens in these circumstances as panic or anxiety sets in?

I know this isn't the happiest of posts and I honestly appreciate everyone who replies. I'm using this site as a way to help me come to terms with it and just to talk really, and meet other individuals and I think most of my writing is just incoherent rambling mostly, so apologies.

But on a lighter note, Congratulations on your pregnancy through IVF, I wish you the best of luck, now and for the future.

The policy sadly states if one of you already has a child you are not entitled to any IVF . Look at page 9

and I do have a daughter already even if she wasn't from the best of circumstances

This phrase is a little red flag for me op. I'm so sorry you're going through such a rough time but I wonder if you're in the right head space for all this quite now.
I would advise you ask your infertility specialist for a referral for some counselling. I think you need to get happy and appreciate what you have before adding to your family.

Unfortunately you also seem to have misunderstood the guidelines. In the UK, usually, ivf isn't offered to couples that already have children due to funding.

I hope you take some time for yourself to recover and grieve. Then access some professional support.
Then you have approximately 25 years to save up for ivf

25 years - typo sorry

TeaVee is correct that her circumstances entitle her to IVF - her clinical commissioning group’s criteria is “where the couple have no living child from their current relationship and one of the partners does not have any living children from a previous relationship.”

Greater Manchester is well known in exceeding NICE’s guidelines in this area.

Ah, in which case it was i that misunderstood. Apologies op, I still hope you get chance to talk to someone before you proceed

OP, I’m on an infertility thread where many people, including myself have successful IVF treatmeant, so don’t write it off before you start, it’s a really tough process & emotional rollercoaster so try & think positively else the bad times during that tough process will get the better of you.

It’s great you clearly have the support of a good partner because again, you will need it, & perhaps that’s why a lot of ppl (including myself) are slightly negative when you seem to be “complaining of” your 3 NHS tries when you haven’t started yet as some ppl will have been through their 1 NHS try and it will have affected them emotionally, mentally & in their relationship & yet now they will be continuing their struggle, and some others, like you, will have no savings to carry on, and not have those other chances you have so that’s why they probably feel a bit sore at your post.

At 24 you may have no tubes but luckily you most likely have good quality eggs which IVF will be able to “get to” bypassing your lack of tubes so that’s good, then putting them back in! So 3 goes should hopefully be enough time to get the medication right.

I wish you all the best but I’m sure you’ll be fine
And on the back of this myself and a whole host of other MNetters shall we move to Greater Manchester??!!!

I had to double check page 9, but I was correct in my reading, thanks for checking yourself though.

Yes, I completely understand how my post could be upsetting to many others as I know I am very fortunate compared to a lot of people. I wholeheartedly agree with what you said in the last post, and greater Manchester seems like a much better area for fertility hope.
I meant my daughter not being from the best of circumstances due to her father being a sexual and emotional abuser, but she is my word and I love her to bits, she keeps me going especially at times like this, as does my current partner.

We are already making plans to save up for ivf in the future if it does not succeed, had a look at clinics in the uk and abroad, just so we have some sort of idea how much it costs privately, so I am feeling more positive than in my previous posts.

To the person who suggested I may not be in the right frame of mind right now, your correct. I know I'm not, which is why we are going to take some time, we have our appointment with our fertility doctor in February so we can ask all the questions we have and get as much information as possible but in the meantime I'm going to speak to my gp about some counselling, just to help get things a bit more organised in my head.