secondary infertility

[keepingthefaith21]

Hi all, I know this has been covered a lot however as a ghost follower for years I've noticed a lot of threads don't ever have an ending, so i promise to give one.

im 39 not long turned with 3 children 19, 16 and 14. and have been with current partner for nearly 11 years, he has done a test which showed amount was a bit low 10k, ive been diagnosed with secondary infertility. ( i know that means they just haven't found the problem) but its really getting me down.at first I dint think there was a problem then the years started creeping by i have been trying for over 9 years and for past 3 years doing everything possible, ive had a few faint lines on tests which i assume were chemicals and last year i had a bfp but it didn't get to 5 weeks. ( the only thing i did different that month was caster oil packs)
ive had all bloods which are ok ones which were not ive been supplemented for, several ultrasounds and a recent hsg. tubes are clear.

ive been charting and noticed that every 3 months i dont ovulate, trying to explain this to consultant/gp has been difficult so i decided to do a private progesterone which showed this month i didnt. 10.9 his response was i did it on the wrong day, he will order me to do another tomorrow however there is no more he can do for me, I cant afford to go private or pay for ivf.

is there anyone out there that can give me any hope as i'm about to give up. I just dont know what to do anymore or why this has happened. its caused so much stress with me an my partner that we are hanging by a thread. I know that's not the best environment for bringing a child into but its only because of the infertility everything else is ok if not mentioned.

im considering giving up but feel i'll regret it, hence this post.

Im not looking for a magic plan to follow just anything that i may have missed or could try different.

thanks x

@keepingthefaith21

From a test perspective, there’s nothing I can think of, it seems you’ve had all the standard tests and you’ve seen a consultant. Sometimes people don’t ovulate in a cycle, but you are still ovulating in most cycles.

You have said some things that I personally find hard to relate to:

“I just dont know what to do anymore or why this has happened.”

I hope you don’t take this the wrong way, but it’s really hard for me and perhaps others to relate to this, most people on here could potentially be facing a childless life, you have had 3 children already. I couldn’t even begin to imagine being that lucky.

“its caused so much stress with me an my partner that we are hanging by a thread. I know that's not the best environment for bringing a child into but its only because of the infertility everything else is ok”

I don’t think it’s possible for one thing alone to bring down a relationship. And I agree, it’s not the right environment for a child. If you think it’s bad now, then how will it be when you add a child to the mix? Perhaps you and your partner need to seek some couples therapy to improve the situation before introducing a child into it.

“I cant afford to go private or pay for ivf.”

How do you expect to afford a child then? Children aren’t cheap. A lot of people on this forum don’t qualify for NHS treatment. Many of us have made significant sacrifices to afford treatment, I’ve had 2 unsuccessful transfers so far and even with a treatment package, when I add in the cost of my medications and investigations, I’ve spent £16,000 and me and DH are no closer to a child. One MN user talks about how she lived like she had a child for one year and saved the amount of money for IVF.

I really hope I haven’t come across as harsh with my reply, it just sounds like there are other priorities that you should consider right now.

@Gardenlady543 Hi and thanks for your reply, as i mentioned above I have been a ghost follower on posts for years and have never posted as i knew I would receive some sort of backlash as a "secondary infertility" poster.
Tbh I have found your post, a little harsh as my post was written in such a low place an i'm looking for positivity however at the same time I will take on board your comments and glad you didn't just read and run.

i'm sorry you are going through it to, and i've have said many of times over the years i can't imagine how someone who has no children deal with infertility but this is the whole reason i've never posted before as i have children and wanting more is frowned upon by anyone going through primary infertility.
I personally believe it's just the same if not worse, as trying to come to terms that your body has just stopped doing something its could is a hard pill to swallow.
most not all people going through primary infertility get a diagnosis, PCOS, endo etc. or have success with iui, ivf ( i understand that does not apply to you) use donor eggs etc or even with clomid
however with secondary is mostly unexplained. and that is the bracket i fall into.

and because i do ovulate most months they won't even give me clomid/letrozole.

if a reason was found i would gladly find the money for IVF but im in a position that paying thousand on something may not work will make matters worse as a miscarriage is not something i would wish on anybody. A diagnosis is what i'm really after and thats what makes me angry as not getting one gives no plan forward, I just feel stuck.
but saying all that we are all different and deal with things differently.

I am totally great full for the children i have they are my world, however you mentioned the cost of bring up a child. so to that i just have to say its not as bad as people make out, my children have everything some may say i've spoilt them others would say they didnt get enough and as much as you cant bring a child up on fresh air, having a grown child shows me that being there is what is important. Honestly somehow you just find the money, but you cant always find time.

also to add me and my partner are fine, we have been together for 11 years however as we both have children separately the stress of not having a child together is taking its toll, as neither of us have had to deal with something like this before. He is ready to stop and throw caution to the wind but i cant bring myself to and feel i like i'm actually doing something. when i say that i mean ovulation tests, using pree-seed before, TIMED intercourse, him waking up to a thermometer beeping in my mouth lol, throwing vitamins at him appointments getting no answers and having infertility and ttc as the main topic so if i'm honest its on my part as the issue is with me not him, i'm not sure how old you are, or how long you have been trying but as a woman i'm sure you can relate that time is not on my side.

with this response i'm not trying to change your mind as i have taken aboard your comment, but it would be good if you or anyone going through primary infertility think about this, infertility is hard primary or secondary, and for those who think anyone with secondary infertility should just get on a be happy with the children they already have think about how they will feel when the treatment/s they have are sucesfull, then years down the line you want a sibling or just have baby fever yet cause they struggled the first time they end up in my bracket "secondary infertility"

would they still have the same opinion?

@keepingthefaith21

“I personally believe it's just the same if not worse”

That sums up your 2 posts for me... your situation is not the same nor is is worst than what the vast majority of people on these forums are coping with. If you truly believe this is the case, then I am really worried about how out of touch you are, you clearly think your situation is the worst situation you could possibly be in, there are people on these forums with no tubes because of recurrent ectopics, people who have never been pregnant ever and don’t feel they can go on with fertility treatment.

“most not all people going through primary infertility get a diagnosis” no they don’t, most people on these forums have “unexplained infertility”, most people never get an answer and hope and pray that IVF will work for them and if it does work, it often takes many cycles to get there.

I don’t know what to say to you, you seem to think you know all the answers already and you’re likely to disagree with anyone who doesn’t agree with you. What do you want people to say?! What test do you want recommended (that is free, because you don’t want to pay for it) and that your specialist and GP haven’t already either done or suggested?

@Gardenlady543

I still read posts from 2002 to find out what helped others. I know full well what some people go through. But what i don't know is the outcome as many dont come back. So I thought starting a thread would not only help me but others down the line.

Its not about having all the answers, I personally don't feel that I can tell you how "primary infertility" has affected you no more than you telling me how "secondary infertility" has affected me.

my reasons for saying i'ts worse is because you are isolated, branded for being selfish and there is not much help, when your body just STOPS complying.

and if you read though your posts that is what you are doing, basically i'm selfish as I have children.

but have you thought about the impact that it has had on me why after 9 years I am writing a post on the internet to a strangers? How my mental health has been impacted? How when after struggling for so many years finally getting that BFP then going to an EPU to find your HCG is low and that you are having a miscarriage. No because I have children so any pain Im going through should not matter.

And all because the NHS would rather put me and thousands into and unexplained category rather than use the brain power they have between them to give me a diagnosis?!
yet the same consultant also works privately and has said he will take me on as a private patient.
So basically money fixes the situation? However even though i will have to agree to disagree your response it has actually been helpful as your showing me it don't. I actually fear IVF and not because it might not work but because it might and I could have another miscarriage.

Now I can never understand what you or anyone else is going through, but I can try and i wish you finally have some sucess, through either ivf, naturally, donor eggs/sperm or adopting.

my aim for this post was maybe there was something i could look into. eg. I think i could have hidden pcos ( i don't ovulate every month), or someone come along and write I don't ovulate every month this is the reason etc this is what worked this is what didnt!
but for someone who may not ovulate at all ( i get that from your post), I should be glad that I do sometimes and its normal.

its not normal, but because there are so many lazy doctors out there who make woman like us are made to feel like things like that are.

I have not said this is the worst situation I could be in and I really feel for people who have gone/going through other situations like losing their tubes to ectopics. I have had a miscarriage and several chemicals, ive been told well at least you know you can get pregnant, or at least it was early but that does not make the pain any better.

INFERTILITY PRIMARY OR SECONDARY IS HARD, IT IS PAIN FULL, IT IS DAMAGING AND NO ONE DESERVES TO GO THROUGH EITHER.

@keepingthefaith21 is this thread a joke? You seem totally consumed with your situation that you think it’s far worse than everyone else’s? I think if you stepped back and read what you’ve written you will see what others are seeing.

@Whynottry123 And it seems anyone going through primary infertility is totally consumed with their own battle. My point is every battle is different and no one should tell another what it feels like to them.

And to guide each other not bash.

maybe my wording of things could have been different, in my original post however I wrote that post after crying all day due to the telephone consultation i had. Reading it back I haven't even covered all basis!

The response i got was totally biased, and I don't feel that anyone should be told that their suffering should not matter or that their priorities are not straight. when I clearly posted thats our only problem with my partner was the infertility issue.

there are people who have had terminations, women in pre menopause still trying, woman who have given up children or have had them taken away, I have read it all on here. Who are we too judge if they are now struggling with infertility.

i honestly didn't mean to come off as insensitive however at the same time there are other people facing secondary infertility.

I thought posting would help me and others as doctors don't always get things right. Not become a competition of which infertility is worse.

@keepingthefaith21

If you think it could be other factors why don't you just ask your doctor to check for pcos or endo? It could be that you and hubby both the issue. You said he has a low count so why are you taking all the blame and pressure? Maybe some couple counselling will help you both. Fertility treatment is expensive and it's a decision only you and your hubby can make.

I don't think anyone on here sets out to bash you. I think your post was a little 'woe is me' especially when you seem aware that so many people struggle with primary infertility. But I'm not judging your entitles to your feelings.

It must be hard wanting to have a child with your husband and its not happening. I will be devastated if me and mine can't have a baby. He has 2 with his ex wife. So it stings a little but eventually I may have to just accept it. And I will say... At least you both have children. You will have someone to visit you when your old or needing some help or to make your days brighter. Some of us might not get that ever and I think you really should count your blessings. By all means continue investigating your issues but always be grateful for what you have.

@keepingthefaith21 I'm going to try to be gentle here. What is it that you actually want? It sounds as though you've had:

• An HSG
• Ultrasounds (presumably to see if there is anything wrong with your lining)
• Day 21 bloods (to confirm ovulation and progesterone levels)

As @Gardenlady543 has pointed out, anovulatory cycles aren't that uncommon even in younger women. Ultrasounds/bloods may have picked up PCOS, but if you genuinely have been trying for years with no luck, then the next step is usually IUI/IVF. Unfortunately, as you have three existing children, it is extraordinarily unlikely that you will get any NHS-funded rounds; even if you were to undergo IVF privately, the closer you get to 40, the more statistics are not on your side, and you would be far more likely to produce abnormal embryos than normal ones. "paying thousand[s] on something [that] may not work" is just intrinsic to assisted reproduction and there is no magic bullet. I know you want 'a diagnosis', and going private may give you more of an idea, but there's no guarantee that would give you a baby either. They may just come back and say "you're just old".

No one is saying your suffering doesn't matter - nobody wants the Pain Olympics - but your responses do come off pretty tone deaf to those who have been through EVERYTHING that you've been through, but don't have three alive children at the end of it. Just something to consider.

I had one DD after suffering primary infertility then suffered awful Secondary infertility but in my case it was miscarriage after miscarriage after miscarriage (5 in total) then followed by 2 ruptured ectopics and I lost my tubes.

My experience of primary then secondary infertility is that they are painful and terrifying but in different ways. They can't really be compared. With primary infertility is the pain and terror that you may never be a mother but with secondary you have the constant painful reminder of what you have lost (if you had miscarriages like me) running around in the children you have already. Motherhood is tangible rather than a dream. It has sight and sound, and smell and touch.

It was most likely from me that the - live like you have a child comment came from..I've posted that several times over the years.

IVF cost me £35k - and yes I did live like we had another child for a year......for one of us to be a STAHP it would cost £1.3k a month, for full time childcare £1k-£1.5k per month. I agree with @Gardenlady543 that if you can't afford to set this aside for 12 months to build up enough for IVF then I would question how you would expect to afford to raise a child? £13k got us our final 3 rounds of IVF

As I was posting about ttc/infertility and knowing there are many who are struggling, I only mentioned the children I had to give a back story, I didnt think it was needed and would totally be very insensitive if i went on about how amazing they are.
I say that as it keeps being mentioned to be great full for what i have but that goes without saying. I know what I have I know how lucky I am.

@Ttcforever2021@TheSnufflet
Hi and thank you both for coming from a place of understanding and trying to give positive suggestions. And I think that is my fear too not having a children with with my partner rather than not having anymore all.

trying to explain this to medical staff has been difficult, I waited a years to get the first consultation due to already having children then we went into lockdown, a few weeks before. At that point I was 37 im now 39 so all appointments have been over the phone.

I have hair on my face, side, upper lip and now recently on chin. when I was younger i didnt think anything of it used hair removal and that was that. only though infertility and other boards on MN have I thought maybe? but all my results come back as normal. and I know age does not help but i've been with my partner since i was 28 we've never used protection and tbh because I was not thinking about more children I did not see a problem.

also there are things that a medical person would not suggest eg I added I used heat/caster packs and got bfp(that was through research) but someone going through it might. I know i've been going through it for years but i dont see myself as an expert.

yesterday I found out that low B12 can cause temporary infertility. and even though the range is between 200-900ng/ml anything between 200-300 is questionable. mine is 295. yet again other then research I would not of known this.
sometimes i feel doctors just go on the range rather then seeing how close you are to the top or bottom end.

@Gardenlady543 I will apologise to you if you felt my original post was insensitive and felt like I was the only person in the world battling infertility. That was not my intention I have never posted before and as stated it came from a low place. but I do wish you just kept to the first bit as you said you could not relate so anything after that felt like a direct hit.
@Whynottry123 upon reading the comments if i had posted today I would of kept it short and sweet so there was room for positive conversation. and hope the thread can be turned into a positive and not seen as a joke.

@ivfbeenbusy
i'm so sorry for your loses, and everything else you've been through. I need that kind of strength to not give up. yes i've miscarried and had chemicals, an i'm so scared to miscarry again, or anything worse happening as they have not discovered what is wrong.
which is more the reason to not want to pay for ivf, I think I was more angry (when i posted) that its all that was suggested (by the same NHS consultant) just looked liked he wanted to line his own pockets. why i said i didn't want to pay for it. when really if i knew it was a sure thing and i would not miscarry id be doing it right now. you move money around and end up with money for other things.

I wasn't out to offend anyone, your comment about your option when battling primary then battling secondary is the point i was trying to make, after I felt my battle was not important as its secondary so i'm really glad you posted as both ways are just horrible.

congratulations on being able to beat secondary infertility. I .hope I can too.

@ivfbeenbusy Can i ask the diagnosis you were given? if any. and if you had any implantation issues? ive had regular private scans (near enough every month) on months i ovulate my lining is great and months i don't ovulate not so, low estrogen?
I ask as my HCG doubled (2 days after BFP) in last pregnancy but then declined at next blood test (2 days after). but progesterone was high and took a week to bleed.

Also if anyone could shed light on me thinking it could be an hormonal imbalance. why do i have a reading of progesterone 10.9, if i haven't ovulated.. and months i do ovulate i'm hot charting sees me hit 37+and stays high till period (me and my partner joke about menopause) but months I don't im freezing, temps are low 36.5 is the highest.

can i be imbalanced the other way. high progesterone, low estrogen? never heard of it going through MN but is this actually a thing?

and if not pcos/pco what are other reason to be imbalanced. i have an overactive thyroid only diagnosed last year but within 6months i was off meds an levels are stable. so endo thinks it could have been caused by a pregnancy but with only a faint line on test and bleed when expected its not for sure.

Can i ask the diagnosis you were given? if any. and if you had any implantation issues?

I never got a diagnosis. I was a patient at an NHS recurrent miscarriage clinic and found them useless to be honest

ive had regular private scans (near enough every month) on months i ovulate my lining is great and months i don't ovulate not so, low estrogen?

You won't know without requesting e2 blood tests during what might be a cycle without ovulation. Age 39 the obvious answer is likely
peri menopausal?

I ask as my HCG doubled (2 days after BFP) in last pregnancy but then declined at next blood test (2 days after). but progesterone was high and took a week to bleed

Were your 3 children born by c section? If you never had a pregnancy confirmed with a visible sac in the uterus it's possible that these weren't miscarriages but ectopics

At late 30s and onwards miscarriages and chemicals are most likely to be caused by chromosomal issues.

Just another perspective as I’ve suffered secondary infertility having got pregnant naturally (and relatively easily) the first time. I was desperate to give DD a sibling, it was painful, and I felt like everyone around me was pregnant. But, as my husband pointed out, others probably looked at me in the same way when I was out and about with my DD. Not to add to the ‘which is worse’ debate as I agree you can’t compare one person’s pain to another and it’s pointless to try, but I do think had I experience primary infertility the mental strain would have been harder to bear, for me anyway. I still had the experience of being a mother to DD who absolutely fills me with joy, which I felt alongside the agony of wanting another.

We had to go down the route of private IVF as we have a chills already, I managed to get a couple of tests of the NHS - ultrasound and basic bloods, sperm analysis for DH (although GP interpretation was poor). And actually I accepted this as the NHS doesn’t have infinite money, they have to prioritise, and the money they do have for IVF should ups absolutely go to those with no children.

Going private doesn’t mean you will get a diagnosis by throwing money at it the reason for our secondary infertility was still unexplained. My thoughts on why some NHS doctors don’t suggest things is probably due to things needing to be evidence based, private clinics I guess are more likely to try/suggest things because they have the finding you!) to do it. And at what point would the NHS advice be seen as fertility treatment that you should be paying for.

I understand your pain but get why someone with primary infertility would find your dilemma a hard pill to swallow. Still wishing all the best xxx

@ivfbeenbusy your replies have been so helpful, not having a diagnosis is what i'm finding hard, I agree clinic is useless but you show there can still be a happy ending if i go private for treatment and not just tests.

the bloods on an anovulatory cycle is a good point, as i have never caught it on the follicular side only in luteal phase. last results LH 5.6/ FSH 4.1 maybe if i chose to continue ill have regular LH/FSH till i catch something.

They were all v births, no problems other then after, tearing really bad, being stitched wrong then having surgery to correct the problem (no1), and (no3) after being induced it was so quick i went into shock had a catheter fitted then an caught an infection, which I totally forgot about till writing it now. (I always just say it was traumatic), which is why i never properly started TTC earlier. I don't even think i was told what is was after a week of being readmitted to hospital.

so now saying that and when i went EPU i believed it was ectopic too (no sac) but it was quickly dismissed by nurses/doctors. and i went back to a&e 3 times saying the same because of pain. I have very painful ovulation on months i do and pain all luteal phase till period (which i thought was corpus luteum. So your point on ectopic's rather then chemicals/miscarriages as i get every other pregnancy symptom going makes me think you could be right. pregnant not imbalance!

I had extremely painful ovulation after my DD.......then I had my ectopics and lost
My tubes due to scar tissue/adhesions....after that no more ovulation pain (I still have my ovaries) so it is possible your painful ovulation is a sign of something is going on with your tubes

The fact you caught an infection from
The catheter could mean you developed PID which can damage tubes

I found the lack of answers the hardest - I'm a "fixer" - if I know what's wrong at least I know there is some way to fix it. Obviously for me damage to my tubes was part of the problem and then there was the issue of my miscarriages. I did do genetic testing on one cycle of IVF and all blastocysts came back with chromosome issues plus I had poor fertilisation rates so that perhaps gives me my answer (aged 36 and poor quality eggs). I eventually found an IVF protocol which worked for me and I had twins in January

@Grettle hi thanks for message.
sorry to hear you have gone through the same thing. I didn't even plan 1&2. So its all come as a shock but my age is making it feel real.

from you response and others it seems maybe IVF is the only way forward ( maybe trying iui first) but to stop chasing a reason.

i never wanted it on the NHS I more just wanted a diagnosis as the pain is already unbearable and getting a BFP that leads to nothing or it totally failing is just more heartbreak Im not sure I can handle.

however even though I may of approached the subject wrong and hit back when i felt targeted it shows that primary or secondary it still comes with its own heartache. and yes it can not be compared as tbh its my children that keep me going.

I do just wish that all trusts go by the same rule book, as reading through MN some have had more investigations than others.

thanks tho you've made me feel like i'm not alone and there is hope xxx

@ivfbeenbusy i'm a fixer too. and really think that is the biggest problem in all of this. i feel so out of control as there's only so much i can do without telling medical staff they are wrong.

i am really coming round to your way of thinking about the tubes, things seem to be similar, i'm so sorry again to hear you lost your tubes. that makes me angry as maybe if they looked into it more you would have known to go straight to IVF rather then keep trying naturally.

my LH/FSH have always been good so never given quality a real thought. and was told AMH was pointless (NHS perspective) but calling around most private do.

but as mentioned NHS have limited funds so maybe i'm not giving them their dues.

you've really been great, i'm going to look into what you've noted as HSG just said clear was not told about scaring if any.

congratulations on the twins.. a double blessing xx

Hi @keepingthefaith21

I'm sorry you're facing secondary infertility. I'm sure it places a strain on your relationship and that it's disappointing you've not been able to have children together.

I have to agree with PPs though about this comment: "I personally believe it's just the same if not worse". If you don't want the conversation to be about which is worse then you really shouldn't make comparisons. I know you've backtracked a little but I think you probably don't have the faintest clue how difficult being childless is and fearing never being a mum at all. It's fine that you don't get it because you've not been through it, but please keep in mind that you struggle to relate when speaking to people who are themselves in a difficult place and likely to be upset by such insensitivity.

I have a child and I very much want more so in that I can relate. But I had my DC via IVF after a decade of infertility and, for me, I'm a mum at last. I've experienced things I once could only dream of. I'll always be grateful whatever happens in terms of having more. It makes no sense to suggest that my situation now (infertile with a child) is worse than my situation before (infertile and childless). I'd have been really upset and angry if I had read your post before I got so lucky with my IVF.

I also have unexplained infertility like many, many others. I don't know why you've assumed this affects those with secondary infertility more.

I wish you well with your efforts for another. It's totally legitimate for you to want that and you're entitled to feel upset.

@Yokey

Hi and thanks for your message, 10+ years is a long time. I’m so sorry to hear that. But so glad that your story ended well.
My aim was not to compare and as the post said secondary infertility I didn’t expect someone with primary who could not relate to come at me, and make me feel selfish for being in such pain so yes things were written as a reaction.
On a more positive note I’ve read a lot that sometimes people who struggle with primary infertility go on to have natural pregnancies, it’s like their bodies just remember what to do. Bear in mind I’m saying that without knowing how long you’ve been facing secondary.
Mine on the other hand has just given up. Which is something I never imagined happening.
Can I ask how you and your partner dealt with the pain, frustration?
Also many might have given up and your success could potentially help others so if you don’t mind me asking do you feel you did anything different, changed clinics, nutrition/diet, relaxed more, supplements?

Wishing you all the best too and hope second time round you don’t face another battle. x

For anyone else reading this post, I was actually advised to remove it an re post because of the negativity at the start, however I do believe their is some good information that could possibly help others why I will leave it up.
Even if it only shows anyone struggling with secondary infertility that they should not feel guilty for any emotions it may bring.
The day I wrote my post would of been my due date. It is also the same date my consultant told me there was nothing more he could do.
It was a bad day.
I have been referred by my consultant to another who supposedly has better success with patients with secondary. (A few months) and upon her advice will see if we decide on IVF.

If anyone in my situation has any success stories without IVF. please let me know x

I will update this thread no matter the outcome but have a few months to wait for appointment x