Can IVF cause endometriosis?

[MiniCeeCee]

Hope everyone is keeping well! In my last frozen IVF transfer (my second transfer in total), the consultant found an endometrioma cyst on one of my ovaries. When one of these is found, you’re automatically classified as having stage 3/4 endometriosis. But what I’m trying to acertain, is whether I perhaps had endometriosis before they found this cyst (despite having no real symptoms) or whether the IVF and associated medication has contributed towards it? I’ve heard oestrogen often feeds it. But I’m unsure whether I need to get further checks now to see if I have endometriosis in the uterus, as well as the cysts on my ovaries. Any insight or further perspective would be super helpful to hear! x

[SarahMEndo]

1.5 years ago I got diagnosed with Endometriosis, they found several cyst on my ovaries and after a full torso MRI also in my bowels and other places. Like you I had no symptoms that most people think is endometriosis. I don’t bleed heavy and have normal periods. Although I did get diagnosed with mild IBS years ago. Which was actually the endometriosis instead.

I am currently pregnant through IVF, and my endometriosis was not triggered by the hormones. My bowels did get super upset because of the progesterone which caused pain.

What I understand of endometriosis is that you are born with it and at a point gets irritated/ activated. And if you have cysts you possibly have it elsewhere as well.

I hope this helps.

[MiniCeeCee in reply to SarahMEndo]

So helpful thanks so much for your response. Could I ask if you ever had surgery on your endometriosis? And with your IVF, do you mind me asking what protocol / what IVF medication you were on? I’m about to enter my 3rd IVF try after 2 failed attempts and just wondering if any particular IVF drugs are more helpful for those with endometriosis. Thanks again, and congrats on your pregnancy!

[SarahMEndo in reply to MiniCeeCee]

Hi! No I had no operation so my large endometriomas are still there. They are around 7cm and 5cm. (Stable though). The endometriosis is deep infiltrated in my bowels and I officially have stage 4 endometriosis. And will need an operation when my family is complete.

Just to let you know and not to make you feel bad or triggered. This was our first round of IVF placing a embryo back and I am aware how lucky I am.

I was on Gonal F and Ovitrelle and had a down regulation month before I started stimulation hormones, which was with sepracur (i might remember that name wrong). To let my follicles grow I needed quite a high dosage and ended with 400-450 I think at the end. Due to the endometriosis I was put under full anaesthetics so if needed they could manipulate my belly more to access the ovaries. I am 35 turning 36 in a few months. They couldn’t reach my right ovary due to the endometrimas cyst blocking it. Got 7 eggs out, of which 4 fertilised and 2 made it to 5 day blastocyst. I was put in progesterone to be administered vaginally after the embryo transfer.. one in the morning and one in the evening.

I did take time off during the retrieval and embryo transfer and worked from home in the 2 week wait as well.

Hope that helps.

[MiniCeeCee in reply to SarahMEndo]

Super helpful thank you! And such amazing news that it worked first time, even though it didn’t for me… it gives me hope that one of the two we have left frozen (as we got 4 blastocysts in total) might be ‘the one’. Fingers crossed! Thanks so much for sharing your story, really appreciate it! x

[MrsOrangejuice]

I had endometriosis from about age 11 (or that's when when my period's started and the symptoms) and I was told for years I was too young to have it. Luckily a nurse put me on the combined pill for 3mnths at a time and by the time I came to having a laparoscopy aged about 19, they only found small amounts and no scarring. Stayed on the pill until I was 30 when started TTC, had it rechecked by laparoscopy when I was in my early 30s and they didn't find anything, even micro endometriosis. Started IVF for unexplained infertility around 36 and have had 4 rounds (one cancelled) and endo symptoms have never reappeared and actually my periods have gone like clockwork and my hormones have completely calmed down since starting. That may be coincidence but just so you know it doesn't necessarily bring it back on or cause endo symptoms. I would also recommend a second opinion from an endo specialist if your clinic doctor isn't one - sometimes the IVF doctors can also be trained/specialist in endo and gynae issues (and vice versa) but so far the ones I've seen have had very different specialisms and the gyanae conditions and treatments can be vastly different so worth getting it checked out.

[MiniCeeCee in reply to MrsOrangejuice]

Thanks so much for your message, really helpful to know. I’ve got a GP appointment next month, where I’m going to be asked to be referred to an endo specialist (the NHS endo specialist in my area seems to be based on the same road as my NHS IVF clinic, so you’d hope they would be able to talk and connect to one another 🤪) Even though I’m already on the IVF rollercoaster now (got my 3rd NHS round later this year) I feel like it’s important I learn more about what’s going on inside. Just nervous about the wait times, will see what they look like. But tempted to explore private it it comes to it. x

[MrsOrangejuice in reply to MiniCeeCee]

Agreed. It can be a bit of a tricky one if the timings begin to conflict - e.g, they say they want to do a lap or surgery and then that delays IVF a bit, and I also looked at private - may be worth it if you're on NHS IVF as you may be able to fit it in around treatment whereas NHS can be pretty long wait times. I'd be tempted to at least get a consultation on the NHS or private so you know next steps, options, timelines etc. They may even be able to look at your notes and give an initial assessment and answer some of your questions re meds, what makes it worse etc. I think generally endometriosis doesn't like oestrogen and even when you have no symptoms you can still have a hormonal hangover from it in the form of oestrogen dominance and progesterone resistance - pretty sure that's been my problem for years and tweaking the FET meds a bit (less oestrogen/more and different forms of progesterone) did result in success for me.

[MiniCeeCee in reply to MrsOrangejuice]

So glad to hear you had success, do you mind me asking what meds worked for you? Also did you go private for exploring endo? I’m just north of London, so looking Bedfordshire way or London but finding it difficult to see what’s private and what’s not online! x

[MrsOrangejuice in reply to MiniCeeCee]

Had a medicated FET but that went off my natural period (as it's regular) and no down regulation (had that on one fresh round and didn't get on with it at all, although apparently it's recommended for endo so something to look at). Started on 3 x 2mg progynova (oestrogen) but it made me so unwell and my lining became very thick and uneven so they reduced it to 1 a day. Then progesterone was 3 x 200mg utrogestan vaginally (apparently better absorbed and can have more direct effects than rectal) and 1 lubion injection. Then my progesterone came back low ish on transfer day so they upped me to two lubions a day. Got a super early BFP on that combo and it was successful. But... I also used the same combo on my last FET and that was a BFN, so it doesn't solve everything. I had private medical through my work and saw an endo specialist at one of the big private providers who have hospitals everywhere - we don't have much choice where we live tbh but I looked at the doctors' bios and was happy they had been specialising and treating endo for a long time, and seemed up to date on latest thinking. I did see a private consultant in London a few years prior, based in the Shard, who was very expensive but pretty useless, so is worth doing a bit of research. There are endo charities and support groups and it may be worth also getting in touch with them to see if they have recommendations.

[MiniCeeCee in reply to MrsOrangejuice]

Thanks so much MrsOrangejuice so so helpful to know! I was on 5 x 2mg oestrogen per day in my last FET (prior to me knowing about the endo) and thought it felt like a lot, so will def be looking at whether that can come down if they recommend it again! Know it’s always going to be a numbers game, but at least feeling more clued up from chats like this on here mean I can go in a bit better armed with information and questions 😊 thanks so much again, appreciate your detailed response! X

[Snoopydraws23]

I have stage 4 endometriosis, it’s extensive and my bowel is tethered to my uterus. However I’m asymptomatic so had no idea I had it until I underwent a laparoscopy. The reason for the laparoscopy was to check the patency of my fallopian tubes after 4x rounds of clomid were unsuccessful and 18 month TTC. They couldn’t even locate my tubes due to the endometriosis. We decided against surgery to remove it and went straight to IVF.

[MiniCeeCee in reply to Snoopydraws23]

Thanks Snoopydraws23 , good to know your story and thank you for sharing! I’m hearing a lot about avoiding surgery where poss, and IVF being the best solution. I’m already on the NHS IVF road, 3rd round due in a few months. Just want to make sure I’m not missing out on specific medication for FET’s that helps implantation for people with endo, (as after two failed rounds, my worry is that the endo is impacting implantation). But will def be asking the doctors about it. X

[Endofitall]

I think what I’ve learnt along this road is that there’s no one size fits all or one way endo presents or affects women.

I have a very different experience to those above where I’ve had rounds and rounds of failed IVF (prematurely low AMH secondary to the endo effects on my ovaries) meaning poor response to stims and recurrent implantation failure despite good quality blasts. Only time I’ve got pregnant after years of trying naturally too is in the month after my endometriosis excision (sadly wasn’t successful but still closest we’ve got). I didn’t have this op purely for fertility purposes (though all specialists hoped it’d help) but because being off hormone treatment and all the oestrogen fuel from IVF rounds had made my endometriosis symptoms absolutely unbearable that I had no quality of life so it was either do the op or stop TTC.

I think there’s lots of different presentations of endometriosis and for me I feel the level of inflammation and pain was high. It just felt like no way the embryo could survive in there. My period now post op is complete revelation. I’ve had awful periods and cyclical bowel symptoms since they started age 11 and now they are pain free for the time being at least. I had severe rectovaginal endo and affecting my left ovary and surrounding areas. I am so regretful for not doing the surgery earlier and when I was 5 years younger but I kept being told IVF was the solution and pregnancy would help - great advice if I could get pregnant with IVF or ofherwise 😖.

Great idea to see an endo specialist for opinion, ideally someone who also has reproductive medicine interest. Best of luck xx

[MiniCeeCee in reply to Endofitall]

Thanks so much Endofitall , I really appreciate the advice, so sorry to hear you’ve had such a tough road, and I hope that you find success soon and that your pain free periods remain that way! Xx

[Endofitall in reply to MiniCeeCee]

You’re so welcome. And thank you. What I would say as well is people with endo are much more likely to have immune issue affecting implantation too so seeing the recurrent implantation failure clinic in Warwick and maybe getting them to run some basic antibodies eg Antiphospholipid antibodies if they’ll do that at your clinic/GP would be a good first step. xx