endometriosis and fertility

hi all, apologies as I have asked this before but just seeing if anyone else can add their experiences as I am due excision this summer …

Sorry if this is sensitive to those undergoing fertility treatment.

I just wanted to ask if anyone who experienced subfertility or infertility had a laparoscopy with excision of endometriosis or removal of an Endometrioma which resulted in pregnancy/live birth following failed ivf.

I have had 3 x retrievals and 2 transfers of ‘top grade’ blastocysts with no positive results. Just sense checking if laparoscopy is a good move. My mind is pretty much there, but just hoping for some experiences to be shared.

Thank you xx

[Endofitall]

I am not (yet hopefully) a positive story but what I can say is that after years of trying naturally without a single positive test, 3 full cycles of IVF and multiple failed transfers, we conceived naturally in the month after my endometriosis excision. All my specialists are in agreement that the excision has changed something. Sadly it was an ectopic pregnancy for us this time but 8 weeks pregnant still furthest we have ever got and some proof our egg and sperm survived to make a baby in there. Whereas before I think my pelvis was just too toxic for anything to make it!

I really hope you can come to right decision for you. If you search Camran Nezhat on The Egg Whisperer show it’s a really interesting podcast on endo and fertility and the importance of excision for some women in finally achieving pregnancy.

[Hidden in reply to Endofitall]

oh wow - I’m so sorry it didn’t end the way you hoped and deserved BUT like you said, the fact the sperm reached the egg is amazing!! We’ve been TTC 5+ years and like you 3 rounds of failed ivf, so feel like we need to try this now. Do you mind me asking how old you are? I’m 36 so definitely getting on. Praying this gives me a positive outcome ♥️ wishing you lots of luck and keep me posted! X

[Endofitall in reply to Hidden]

Sounds like we’ve had similar journeys. We got married in 2019. It’s sad to think might have school age kids now if IVF hadn’t been pushed so hard and my endo (which I’ve had since my periods started) ignored. I had awful worsening of symptoms after IVF drugs. By time I had lap it was more a case of trying to do something to help symptoms not really main aim for fertility. Life was just so hard and painful. I had to pay private too - and that after having to pay for most of our fertility treatment as they wouldn’t fund us with my low AMH and poor response to stims - caused by my endo 🤷🏻‍♀️. We took a 0% deal with Spire for lap to spread cost at least. I was still 36 conceiving this baby, but turning 37 this year. It’s so sad for me to think I could have been conceiving with eggs 5 years younger. BUT have to think positive now. I really hope this works for you. We are having to wait for things to heal now after emergency removal of my left tube and the pregnancy, told to wait two full cycles (I do wonder and wish if I’d done that after endo excision maybe wouldn’t have had the ectopic pregnancy as maybe there was inflammation post op 🤷🏻‍♀️but we were hugely encouraged to try Asap) but hoping to start TTC again next month. I’ve recently had my first period since the one immediately days post the lap (because we conceived so quick) and this period was incredibly less symptomatic from endo too.

Keep in touch xx

[Hidden in reply to Endofitall]

Oh yes our journeys are incredibly similar - I turn 37 in July, so will be 37 for my next collection. I feel very similar to you with the age of my eggs - but there is still hope as we are technically young in the world of ivf 🫶🏻

Try and be positive, ectopics can happen to anyone - and you did the right thing to try straight away, my consultant says the same! It’s just incredibly unlucky and unfair that this happened to you. Like having endo and infertility isn’t enough. I do believe you’re in a much better place though following excision, so we can only keep our fingers crossed now, and hopefully if you do go down the ivf route again your body will respond better.

Will keep you posted and wishing you a speedy recovery xxx

[Endofitall in reply to Hidden]

🫶🏼

[dinglet in reply to Endofitall]

Both your stories sound so similar to mine. I also have been TTC 5+ years and have done 3 full cycles of IVF with poor egg progression and ultimately only one good blastocyst transfer. No IVF clinic ever sent me or recommended for me to go for a diagnostic laparoscopy despite me mentioning Endometriosis and having symptoms. Like you I felt the rounds of IVF made my symptoms worse and took me a long time to feel back to normal post cycle. They put my symptoms down to a small fibroid I had outside my uterus and said that IVF essentially works around the endometriosis and therefore no need for surgery.

I decided to go to a private gynae surgeon on my own accord due to symptoms. He straight away spotted the Endo potential and booked me in for surgery in January. He found stage 3 endo, which he excised. He said that the endometriosis and the inflammation it was causing was essentially the main reason for my infertility but now everything has been returned to normal it should increase our odds. He also noted that a lot of the time it is not in IVF clinics commercial interests to treat you for endometriosis.

I am heading for another cycle of IVF next month but still find the clinics difficult in regards to still blaming my low AMH (which was caused by the Endo) and telling me my chances with own eggs are low. Any IVF clinics I have looked at so far (Ireland and Prague) do not seem to look at endometriosis and treat it as part of fertility plan, which is nuts. A friend of mine with Endo sent me this really good research paper from the US were it states 90% of cases with unexplained fertility had Endometriosis and when it was treated and excised a large proportion of them went on to conceive.

mdpi.com/2077-0383/13/2/444

We are progressing with our own eggs next month and hoping for a better outcome post excision but you really have to fight for it with IVF doctors.

[Endofitall in reply to dinglet]

I definitely think that’s true - they are selling IVF. The fact it can work for many women with endo doesn’t mean that many women just cannot conceive without it being excised! I’m constantly gaslit that it isn’t the endo that’s at fault.

Good luck with your next cycle 🍀

[Hidden in reply to Endofitall]

I always wondered about the money-making side of things, I feel like fertility clinics just push more and more expensive rounds and tests, but then my paranoid brain thought ‘are endo surgeons doing the same??’ 🫠 why is nothing simple. X

[Fenblue]

oh you poor thing, I can’t believe no one suggested laparoscopy before going for ivf - we are 15 months into ttc, I just had a private laparoscopy on 10th due to massive nhs waiting list - my first was nhs followed by 6 months induced meno-hell…. I’m feeling really positive again after this surgery, but it’s v early doors still - we were told to get on it straight away!! They removed one large endometrioma from my left ovary, drained others and released my right ovary and right tube which were tethered to my pelvis….. so really hoping that all helps massively!!!! GO FOR IT!!! Xxxxx

[Hidden in reply to Fenblue]

All fertility doctors actually advised against it 🫠 I’ve noticed that my pain and symptoms have got a lot worse so went to see a private endo specialist in London (as NHS waitlist was a joke) who said I had nodules, lesions and suspected adeno. He suggested I go for the excision before any further rounds, just waiting for mri results.

Sounds like you had really successful surgey!! Hope the recovery went well. I have everything crossed for you, please keep me posted ♥️ xx

[Fenblue]

I think it will really help you 🫶🏻 even on a psychological level knowing that they have gone in there, removed what they can to give you the best change is such a relieving feeling.

I was scared and depressed after my first laparoscopy because it was diagnostic as well and it was just so overwhelming after fighting to be taken seriously for 7+ years, but this time around I was honestly so excited to get into that theatre and have it all sorted out!!

Recovery has also been so much better this time around, I feel like they took so much more care and time going privately - I know it’s a huge privilege and I had to really take all the money from my savings, but 💯 worth every penny so far. Obsessed with how neat my incisions are 😂

People don’t realise that all the ivf drugs exacerbate endo, basically feeding it which I feel like drs aren’t always honest about….

I really hope to be able to conceive naturally in the next year and I’m feeling really positive after my surgery that it’s possible. I’m not entitled to nhs ivf for another 20 months, by which time I (JUST!!) won’t qualify on age - it’s so frustrating but it would still be the last last resort for me. After 6 months induced menopause after my first lap, I’m really reluctant to push my body into anything like that again.

Xx

[Hidden in reply to Fenblue]

Thank you Fenblue 🤍 I am glad surgery went well for you and you’re feeling pounds better. Really have everything crossed for you over the next 20months, please keep me posted. X

[Nicccc]

hi there.

I had a laparoscopy and then had letrozole (straight away) and fell pregnant on the 3rd cycle.

Trying for number two is not going to plan but that’s another story. (Was given clomid after the lap and not letrozole and didn’t work now on letrozole again but I think it’s back)

Good luck x x