Infertility after c section

@Lucy040288Just messaging to see how you are getting on. Update on my end- I was due to have another frozen embryo transfer and my consultant had advised blood thinners to see if that made a difference. But I did some research and turns out there is very little evidence that blood thinners really do anything. He had insisted that the spotting and heavy periods were having no impact on my fertility and wasn’t interested in doing further investigations so I thought I’ve had enough of this and decided to get a second opinion outside the fertility clinic.

I’ve been using AI a lot recently to research my symptoms. It is extremely useful - obviously it may not always be correct and you have to check the sources but I really recommend putting in your whole fertility background and seeing what it comes out with if you haven’t done so already. I went to see a gynaecologist (recommended by AI) who specialises in bleeding disorders, including Adenomyosis. He was very helpful and had a very different take on my symptoms from the clinic. I went to him wanting him to look into Adenomyosis but after I’d explained everything to him he actually said he’d be interested in looking at my c section scar and seeing if there is a niche. It was at that point I told him I had a niche but it was very minor and I had been told by the clinic repeatedly that it wasn’t a cause for my infertility. He disagreed and said even if small, a niche could affect things and explained how blood pools in the niche and can flow back into the uterus making the lining toxic (and causing the spotting). My research after that appointment has left me very surprised that no one at my fertility clinic has linked my symptoms to c section defect. If you look up symptoms the top one is dark brown spotting which starts shortly after your period has ended and lasts several days - exactly what happens to me.

Incidentally, he also agreed with me that blood thinners would likely have made no difference. He actually said that if I had Adenomyosis, blood thinners would make the condition worse. He said they were simply one of the drugs they add in to see if they make a difference but there isn’t much evidence to suggest that they help.

My new gynaecologist is now doing further investigations looking for adenomyosis and c section niche. I have had an MRI, am having an ultrasound and he said he may re-do the hysteroscopy to look at the niche. I’ve just started these investigations so it will take a little while for me to know the outcome but I’ll let you know if I learn anything from it.

Getting a second opinion that is so different from anything else I have been told by supposed experts has really opened my eyes to the fact you can’t trust a single (or even more than one) doctor when they sit there and tell you there is nothing wrong and your fertility problems are simply “unexplained”. They seem to only really know what they specialise in (which is essentially IVF) and are surprisingly ignorant about the range of causes for infertility. So my advice is to get another opinion and try to find the right person to ask by researching your symptoms on AI.

@Lucy040288i just wanted to do a proper update as I was a bit emotional last week. Overall it looks like my issue is implantation failure based on no blocked tubes, trying naturally for over a year, and having two failed transfers of euploid embryos. However, they have done pretty much every test and check they can do and can’t find anything that would suggest an embryo couldn’t implant so I am now in the dreaded “unexplained” category. My consultant said I should see that as a good thing as there is no reason why I can’t get pregnant again. But my pessimistic outlook only really leads me to believe there is something wrong and we can’t find it.

Re the spotting that I have been fixated on the whole time and convinced is linked in some way to the infertility, the consultant didn’t really have any answers. But he did say the lining shedding after my period had ended shouldn't really cause any issues with fertility. The spotting before my period coincides with my progesterone dropping off naturally so I think that is why that happens. When I had my first transfer using a natural cycle I had to top up progesterone twice and I didn’t have spotting that month after I came off the IVF drugs, presumably because the synthetic progesterone was taken away suddenly as opposed to dropping off gradually. I discussed taking progesterone at the end of my cycle with my consultant but he said he didn’t generally like doing that because it delays your natural period. He said if I get pregnant naturally, to take progesterone once I am pregnant. In any event, I don’t think this is the problem because I had plenty of progesterone on the two failed IVF transfers.

I asked about doing a MRI to check for adenomyosis which could account for the spotting but he said he didn’t think that was necessary as if I had severe adenomyosis, it would have been seen in the tests I have already done. An MRI could pick up mild adenomyosis. For the same reason, he didn’t think down regulation would help.

My iron levels are pretty low (probably from heavy periods) so I am going to do an iron infusion to see if that helps.

Because of my insistence to try to work out the cause of the implantation failure, I am going to do a test for natural killer cells, which my consultant admitted is a controversial area but there are some small studies that support it.

Finally, for my next transfer I am going to be put on blood thinners. This will help blood flow to the uterus. The consultant explained that if I did have mild adenomyosis, this is what would be prescribed as adenomyosis restricts blood flow to the uterus. That was his reason for not needing an MRI- because we will essentially treat the adenomyosis anyway.

I also tried acupuncture the other day (I always thought the day I did that would be the day I lost all hope as I really don’t believe in that sort of thing). I wasnt particularly convinced and didn’t really find it relaxing so don’t think I’ll bother again as it isn’t cheap.

So that’s it really. My husband is more optimistic but I am trying to start to come to terms with only having one child. It’s really hard to picture my family that way as it feels so incomplete (I always wanted 3 children, let alone 2!) and I feel sad for my daughter not having siblings. I expect you are having all the same thoughts as me. It’s difficult but I need to try to not let it ruin everything I do have.

@Lucy040288i checked with the clinic and we didn’t do the DNA fragmentation test when we did the original sperm testing. I forgot to ask about it at the appointment today. I’ll try to remember to bring it up at my next appointment.

@Lucy040288EMMA and ALICE tests were clear. Just had my consultation. He has suggested a few other things but I feel I am now into the random tests / add ons stage and don’t really believe anything else is going to work.

@Lucy040288thanks for the additional info. Re the niche - the consultant said it was very tiny and said correcting it isn’t an easy procedure so that was ruled out for now but I may raise it again.

We did sperm testing with the clinic but I do not know if they did the fragmentation test. I will phone them tomorrow and ask. For the IVF my husband was told to ejaculate every 2-3 days before the egg collection day. They didn't tell us why but I assume what you are saying was the reason. So I hope he did do it! We are similar in that we only have sex around ovulation (toddler, stressful jobs and just us both generally having a low sex drive have affected that a lot) so this may be worth exploring - thank you. Good to hear we aren’t the only ones!

I do have kefir most mornings so that should help with lactobacillus. The EMMA and ALICE are the test results I’m still waiting for so I’ll get confirmation either way re whether that side of things is fine.

I have always been convinced the period symptoms were resulting from whatever the underlying cause of the infertility was. I’ve always believed if they recover, I’ll be able to have another baby. Just my own instinct but at this stage I’ve lost faith in medical professionals..

Hi @Lucy040288thought I would provide you with an update. I had the laparoscopy and hysteroscopy a couple of weeks ago. Consultant also did endometrial biopsies, removed the extra thick part of my uterine lining and re-did the hycosy while I was under anaesthetic. Outcomes: found and removed a small amount of stage one endometriosis, both tubes are in fact open, no apparent issues with uterus and biopsies have so far come back clear (waiting on 2 tests). I have had my period and was initially hopeful to see the spotting pre period had stopped. However, I am really disappointed to still be experiencing spotting post period and the period itself was still heavy.

I was pretty shocked to find my tubes were not blocked. Consultant said sometimes tubes can spasm when you have hycosy and this can make them appear blocked. This doesnt happen under anaesthetic because you are fully relaxed. Very frustrated that I was not warned about this possibility by the doctor who performed the procedure originally as it means I did IVF on a false positive test result.

Had a quick chat with the consultant following the procedure and he said whilst it was tempting to be disappointed that we had not found anything obviously wrong, I should see this as a good thing as he cannot find any reason I should not be getting pregnant. I am due to have the full follow up consultation in a few days time. However, seeing that my period symptoms have not been “fixed” by him removing the extra lining and removing the endometriosis has been very disappointing and I really don’t believe this has fixed things as a result.

It is difficult but I am starting to come to terms with the fact it’s increasingly unlikely I’ll have anymore children.

I’ll let you know if I have any further updates. Best of luck with your journey and good luck if you go down the IVF route.

I'm 31 and TTC for two years now, just over actually. We are due to start next cycle.

It could well be other issues for you, but there is a well known link between chlamidya and blocked tubes - particularly in those of us who had the infection for a sustained period of time. Chlamidya doesn't damage your tubes immediately, but after many months it will do. If you are lucky enough to find out quickly it will often have no time to cause damage.

It's very hard to come to terms with - I was very young when I had the infection. I wish i had found out sooner at the time, but it is now so long ago I've had to accept it for what it is.

It is still possible to get pregnant and implant normally if your tube isn't blocked completely, but the risk of the embryo implanting in the tube is much higher than for the average person.

Hi OP I've just read the whole thread. Like you I also had chlamidya as a teenager unknown for over a year. This damaged my tubes though I didn't know it at the time.

I've had a chemical and two ectopics. It's very possible the chemical was an early ectopic my body absorbed.

I'm now doing IVF. I had one tube removed after an ectopic and the other shows clear on HSG - but I'm not getting pregnant from it so can only assume has some unseen damage too.

We sound really similar. Prior to my tube being removed I used to get bad pain (still do but it's different now) and I think it's from having a blocked tube.

You may still conceive again from your less blocked tube but you should know the risk of ectopic is high with blocked tubes and it's life threatening (I could have died with my second one). If I was you (and I am in the same boat but without any living children) I'd do the IVF. Yes it will be heartbreaking if it doesn't work, but natural conception not working is also heartbreaking.

@Lucy040288I agree it is a good idea to take a break from it all. Save for the consultation, I haven’t done anything since July and won’t have the hysteroscopy and laparoscopy until October (due to holidays). It has been nice not to think about it, especially after 2 failed transfers. I do think it is worth speaking to different specialists if you can though. I saw someone different for the most recent consultation and he was 100x better than anyone I have seen before and it was the first time someone has engaged with my period symptoms. I never really trusted the consultant who did my IVF - I felt she was overconfident and dismissive of my concerns and in the end I have been proved right when she (the supposed expert) was wrong. She also told me my lining was very good but when my new consultant looked at my file, he said actually it is too thick and he thinks that might be part of the problem. I think it is a little odd to say you don’t need a hysteroscopy because you have done a laparoscopy and ultrasounds and I expect not all consultants would advise the same so I would be cautious of trusting one person’s opinion. I don’t want to sound like one of those people that doesn’t trust doctors but, as someone in a professional job myself (not medical), I know that people have different approaches, make mistakes and some are very good whereas others can be quite bad at their job! I suspect similar is true of the medical profession. I am really hoping the corrections done during the lap have a positive effect for you!

@Lucy040288thanks for the update? How are you feeling after the laparoscopy? Sorry you have been left disappointed. Have you been able to get any advice on whether the cysts and polyp could have been causing the infertility? My understanding is they can both interfere with fertility so can’t be a bad thing to get them removed. Do you think you might push for a hysteroscopy and biopsy now? I would feel without doing both you don’t have the full picture since the laparoscopy doesn’t look inside your uterus. Hysteroscopy with biopsies may be worth exploring (I am going to be doing the EMMA and ALICE tests which test the microbiome of uterus and test for infection). Probably not available on the NHS but the cost isn’t too extreme compared to IVF. Hopefully things will be clearer once you have had your follow up appointment.

@Sarahdaydreamer1234I’ve just seen a new consultant who was much better than my old one and is the first person who has actually been interested in my period symptoms. I am going to have a hysteroscopy with endometrial biopsy and laparoscopy at the same time. Interestingly, he said my lining was actually too think which is contrary to what the doctor who did my IVF told me so I’m a bit annoyed about that but this is why it’s a good idea to change consultants if things aren’t working out. I won’t be having the procedure for a couple of months due to holidays and work and having to recover but will keep you all updated! Best of luck with your journey.

Hi all. Just wondering how you’re all getting on? @HPrior did you have your hysterscopy yet? I’m in same boat. TTC after c section and had a lap which removed mild endo and adhesions which apparently shouldn’t have affected conception and I actually think grew back. I’m now wondering about intrauterine adhesions. All tests including NK cells are normal, albeit my AMH and hunband morphology a little bit on the low side. I did take ages to conceive my first so I’m not sure it is due to the c section.

@Lucy040288just to update, I had my follow up consultation. I am going to pause on transfers while I do proper investigations. Going to start with hysteroscopy and endometrial biopsy (tbc which tests I’ll do from the biopsy- probably ReceptivaDX, ALICE and possibly the other endomeTRIO tests depending on costs), will see results of that and then decide whether to do laparoscopy. Consultant advised I may be able to get lap on private health insurance as it would be a referral for endometriosis investigations. Feel happy that I am now getting the investigations I wanted from the start. Although also feel pretty deflated as this is basically back to square one in not really knowing the cause of infertility. Hopefully we’ll both get some answers over the coming months. Part of me is relieved I get some time off from the transfer process - the two week wait after a transfer and dreading the disappointment is like hell!

Endometriosis definitely has symptoms many symptoms. Unfortunately many people think they are normal or are gaslight by doctors. Yes I didn't mean HSG would detect endo - just cysts like endometriomas which are often due to endo. And could be as sign OP has it. I went back to edit, but then forgot about it just messed up my sentences.

Yes they might not have seen it during surgery but they might have. It was just a suggestion to check c-section notes. Many people have looked years after and the surgeon has wrote signs of endo. Pain often does relate to severity and where it is. More deep infiltrating tissue can be more painful. The stages of endometriosis are actually about the impact on fertility. And yes you are right don't correlate with pain but the amount. Someone with stage 2 endo could have worse quality of life and pain then someone with stage 4. Endometriosis is unlikely to develop during reproductive years - yes it is a progressive conditions so symptoms get worse over time even with surgery but the majority of people have had symptoms of it but we're unaware there could be a underlying cause. New research has show the majority of the time it starts in teens going into early 20s - in fact now more gynaecologist are specialising in adolescent gynaecology for issues like endometriosis. Most have symptoms and they they develop and get worse. So many girls miss school (for around 12 weeks) for heavy periods, bowel issues.

Endometriosis very rarely has no symptoms, it's a crippling, Debilitating, whole body inflammatory condition. Yes some don't have any symptoms (I'm pleased for them) but the majority of us do. Lots of people are disabled by endometriosis as its chronic and progressive. Also got some info from studies, NICE guidelines etc.

@TheLivelyVipercan I ask where you’re getting your info from? Endometriosis can have no symptoms at all. Pain levels from endo typically have little relation to its severity - they relate more to where the endo is located. I don’t think it typically develops in teens either - it can develop at any time during your reproductive years. Also endo would not be detected on an HSG - it might show blockages or adhesions but you can’t diagnose endo that way. Blocked tubes can be caused by endo. Also you can’t rule it out because a doctor didn’t see it during c section. It might be in areas not visible from the c section incision and in any event the surgeon wouldn’t be looking for it. Fibroids or ovarian cysts would typically be picked up during an internal ultrasound.