Anyone else also diagnosed with Unexplained Infertility? IUI or IVF(74 Posts)
Hi there, just wondered if anyone is in a similar situation to me. I have unexplained fertility, in perfect health, all my tests including FSH levels, Lap and dye tests have all been perfect. I am 34 years old and we have been TTC for 3 years. Doctors tell me I am a picture of health. I have regular 28 day cycles - almost always to the day. I have never had a missed period, been pregnant or been on the pill. My husband's tests all came back normal too. He is 39.
I was slightly underweight and in order to qualify for IVF on the NHS I have had to put on 3kg. I am half a kg away from normal weight.
I was always extremely relaxed about getting pregnant but I am beginning to feel the pressure after trying naturally for 3 years. I will be 35 in January.
I have now been referred via the NHS to have IUI/IVF but after 3 months I am still waiting for an appointment. I also have an appointment with a private clinic this week as I feel I need to move things along now.
Just wondered if anyone here has been in a similar situation. Would you have IUI first before IVF if you were in my situation?
The downregging drugs hugely affected me. I was depressed and anxious and like another person really. I had almost every side effect listed in the packet and woke up every day I was on the drugs feeling like I just couldn't go on. A lot of people feel "a bit down" on the drugs but I have only ever come across two people online who have had such an extreme reaction. My husband and I decided that if that is what I had to go through to have a baby, it wasn't for us. And then we moved clinics to one (Create) that takes a more holistic, low drug approach, and I have been fine.
euro first of all, I really hope your current cycle has a good outcome.
I hear you on downregging. I had to down-reg with buserelin for my frozen embryo cycle and I really struggled with muscle and joint pains, migraine, and paralysing depression. I didn't have as bad a time as you but those weeks were still pretty rough.
However, for the original IVF cycle I had "mild" IVF ie short antagonist protocol with Gonal-f and cetrotide. No downregging, stimmed from day 3 of a normal cycle and added the cetrotide in the final few days of stimming to hold off ovulation until it was time for EC. I think the aim with mild ivf is generally to hope for about 6 good eggs (though I got 13, and am no spring chicken). If you are able to tolerate cetrotide this protocol offers a halfway house between natural cycle ivf and the conventional protocol. It is quicker, and I think easier on the body.
For what it's worth, I had no ill effects from the cetrotide even though buserelin is the work of the devil as far as my body's concerned!
I had a bad reaction to the down regging drugs and had to stop too, emotionally and mentally I was ok but I developed about 10 cysts which then had to be aspirated (procedure very similar to egg collection)
I too then did a short protocol and got great results. It didn't work but we have 5 day 5 blast in the freezer and are now waiting to start a frozen cycle. I was meant to start down regging in 10 days but have another cyst so they want me to wait and see if it disappears. They've also okayed me to do it without the down regging so I'm now waiting to have a scan on day 1 - if it's gone I'll crack on starting drugs on day 2, if it's still there and they don't feel I should go ahead, I'll have to have another aspiration grrrrr
Going to bump this as quite interested in responses!
Marie, kitty, I'm sorry I don't think I replied to the original question. I'll try now.
I am also "unexplained" and it is such a horribly difficult and frustrating thing for anyone to have to go through. I'm sorry life has thrown this in your path.
You asked how long til referral. So, here is my history though I know it's all a bit dependent on local policy and can be confusing to navigate - we found it so, anyway.
We pressed the slightly-worried button and saw the GP initially after 8 months and were immediately referred to the gynaecologist (but I was over 35 - younger people generally have to try for 12 months before being referred). Our GP arranged the initial blood tests and DH's sperm analysis while we waited for the gynae appt. Saw the gynae 3 months later, HSG a month or so after that and received our diagnosis of "unexplained subfertility, no reason you won't get pregnant it just might take a bit longer" a little over a year after starting trying.
After another 6 months, so 18 months oftrying in total, we went back to the GP as there was still nothing happening. We knew that due to the postcode lottery the NHS would not fund our treatment (in our area over 35s don't qualify). However, the GP was great and referred us to a different gynae to double check nothing had been missed, as you are entitled to a diagnosis regardless of the local funding rules for treatment. The tests were all repeated, except the HSG, and I also had an AMH test which the gynae arranged but I paid for privately (£40) as NHS policy is only to test FSH as a marker of egg numbers. I never had a transvaginal scan, though, at any point prior to beginning treatment.
The second gynae counselled us that our odds of conceiving naturally were ahead of the odds of an IVF cycle working until around the 2 year point, at which the balance tipped the other way. Based on that, we trusted to nature for a few more months and then signed up for treatment. Because we were treated privately at the same hospital where we had the fertility investigations, we didn't need any more tests or consultations and just embarked on treatment as soon as we were ready to take the plunge. There was no waiting list to start following referral for treatment and I understand it is the same there for NHS funded patients (ie we weren't fast tracked because we were paying). So I started my first cycle 2 years 2 months after starting trying to conceive, and 2 weeks 5 days later had an embryo transferred.
Looking back, the gynae referrals felt an interminable wait and we didn't get that much out of the appointments (not really their fault, as unexplained is unexplained). However, once we took the plunge and said yes to treatment, suddenly we'd started before it felt like we'd even drawn breath.
I should say in fairness that we began IVF somewhat against the consultant's advice which was to attempt the less invasive option of IUI first. However, I didn't feel I had the stamina for too many cycles (of whichever sort) and wanted to use my resources pursuing the option which gave us the best prognosis. I was also conscious, at 38, of time passing. And we were both swayed by the hope that even if unsuccessful, IVF was in a sense the last remaining diagnostic test and might give us the explanation that had eluded everyone so far, to help us make peace with our infertility. (It didn't - still no idea what's wrong but on the positive side, I got pregnant.)
IUI is successful for many people and I think with unexplained infertility there really is no right answer, either to how long to leave it to nature, or which treatment route to take, you just have to follow your instincts and what feels right at the time.
I was advised not to have IUI as with unexplained infertility it doesn't really raise your chances much more than having sex.
We went straight to IVF and luckily got pregnant straight away with twins!!
Obviously that does not mean IUI wouldn't have worked, we didn't try.
boygirl tbh this is what I'm worrying about! Can I ask how long you were ttc for and how you you and your partner were at the time?
ceara thanks for sharing your story. Do you think you'll do ivf for another child. Interesting what you say about never having a trans vaginal scan. Neither have I but I'm going to ask my gp to refer me to bupa for one, if only to put my mind at rest.
cerea that is similar to the protocol for the natural modified cycle I am doing now (although I started the drugs later thank day 3). I used Gonal F and Cetrotide. I did have some side effects (I was down and really fecking grumpy) but as I was only on the drugs for a few days, it wasn't as bad as being on burserelin.
we had unexplained infertility but ended up conceiving naturally both times, first time just after the lap and dye, second time just we were just waiting for my period to work out when to start the treatment and it never came. I was 39 (almost 40). Second time doctor was horrible, he treated us (especially me) as though we were idiots and problems that needed solving rather than people. I felt he really pushed us towards IVF, even though my understanding of the stats suggested was that this was not necesarrily the right thing to do. What really helped was counselling from someone at the clinic, they had enough information to help us make an informed choice
I'd love some counselling but the last time I spoke to a nurse at the clinic I ended up in tears. drwitch how long were you ttc for? X
kitty we planned to do 3 cycles unless the first found an insurmountable problem. If we are blessed to have a healthy baby, though, I will quit while I'm ahead (except for giving our remaining frostie a chance), not least because of the age I'd be by the time I was ready to cycle again.
If you are thinking of going to BUPA and paying for a scan, you might consider instead booking an initial consultant appointment at the fertility clinic? Then you could hear more about your options, and the clinic could do the scan and advise you on the findings. The scan should cost the same though the consultant appointment would obviously add £100-200 to the bill. Talking commits you to nothing and information is power.
I'd also second the advice to talk with a fertility counsellor before you make your decision. Our consultant was lovely, but I still found the clinic's fertility counsellor invaluable to talk to as there is so much more than the clinical biological stuff (the consultant's comfort zone!) to think about.
drwitch your experience sounds horrible. Mine was the opposite, we were given all the time and support we needed to decide how to proceed and urged to consider all options.
kitty don't let me or euro freak you out about buserelin. Most people don't find it too bad, and suffer mild or even no side effects - we were just unlucky, I guess :-). But it's good to know there are alternatives if you need IVF, and fall out badly with buserelin.
cerea we already have a fc! I just always feel rushed with her and she doesn't think we need a scan. I think I just want one for peace of mind if anything. I'm presuming bupa would send my findings to her, if anything?
Sorry kitty! That was me assuming that you were seeing the gynae registrar for investigations, like we did.
No, no gynae problems (that I know about anyway). Our fc has put us on the
ever long iui waiting list but I'm just not sure whether it is the right thing to do
Hi kitty. I mentioned the side effects I had on burserelin in my 28 June post. I am very much in the minority though. My closest friends irl took it and don't remember any side effects at all.
Ah ok. It's not even like I've been offered any ivf yet! Just trying to gain as much info as possible!
Hope you don't mind me joining. We find ourselves in this situation of ttc for 2 1/2 years and unexplained fertility. We have been advised by our fertility clinic that if you have been ttc for 2 years with no success, don't bother with iui as it's unlikely to improve the situation much. We have been advised to go for ivf which we are hoping to start over the next week or so.
Feeling nervous of the unknown at the moment but hoping that the reality will be better than my imagination!
I too have unexplained infertility, my husband and I have been TTC for 4.5 years since I was 29 with no luck. We have had every test under the sun and still no reason offered. In the UK the NHS advised us to go straight to IVF (they didn't even mention IUI) but unluckily we were in the middle of relocating and timing didn't work out in the end. In Spain our clinic (not sure if we will defo use them yet though) recommended 3 rounds of IUI prior to IVF. The paranoid part of me wonders if this is a profit thing for the clinic to recommend IUI prior to IVF though! I am meeting a friend tomorrow who used to be a very successful IVF Dr and will ask some questions about the benefits of IUI over IVF or vice versa for unexplained infertility. Good luck guys!
One test I would also add to make sure is examined is thyroid functionality. It is critical to the whole conception process through to the end of 1st trimester. I conceived my 1st child on the first month of trying and 3 years later are having issues. My GP had no suggestions so on my own I sought out an endocronologist specializing in fertility. Many GPs are not aware that thyroid guidelines for fertility have changed (since the Thyroid Journal published new research in 2011). Now, there is a firm belief TSH levels need to be between 0.5 - 2.5 (the lower the better). My levels are around 5, which is fine to function on my own (and doesn't trigger glaring thyroid issue symptoms), but are prohibiting me from conceiving. My GP was going to refer me to IVF, but even this would not have worked unless I fix the thyroid, which should take some simple medication for 6-8 weeks.
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We've just been through one failed attempt of IUI and then three unsuccessful IUI cycles. The down reg experience for me was not good at all. The side effects of the drugs weren't fully explained to me so it was far worse than I expected. I guess you don't know how you will be affected by the drugs until you do it - everyone is different. With the benefit of hindsight I wouldn't have done the IUI. It costs a lot both emotionally and financially and the chances of success aren't great. Our NHS Consultant was honest with us about that, our private clinic weren't and they encouraged us to do it. I moved to a mild version of the treatment which was much easier but just as traumatic when it failed. The thing that frustrates me is that no one explained what unexplained infertility is. There is very likely to be something that is causing our infertility but it just hasn't shown up in the tests. IVF is often the way of discovering what is wrong and can help overcome it. I think I had assumed that it was just bad luck and maybe some months of missing the perfect time of ovulation (despite all the normal tracking and home tests I wasted my money on). I wish a doctor had explained what the possible causes could be as I think it would have helped me see that IUI wouldn't be worth it. I know some people on the feed have had luck with IUI so I guess I am just speaking from my experience and I realise everyone is different. I am 34 and now we are waiting to hear if we will get nhs funding for IVF. Where we live you can have one cycle if you are under 35. I wish I'd saved the money from IUI in case we need it for more IVF cycles in the future. I wish you lots of luck on your journey!
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