a question for endo sufferers

Apologies in advance for the ramble and I’m not sure if anyone will have any answers, but I’ve been frantically googling and not getting very far.

I have endo and a <2cm Endometrioma. I’ve had 2 failed transfers and am planning an FET for April/May next year providing our blasts come back from pgta as euploid.

However, today I found out that following my second failed collection in May of this year, my NHS clinic referred me for a laparoscopy and I’ve been on the waitlist since then and have been told I’ll most likely will have a surgery date for early next year - before my FET.

The surgeon who will do the laparoscopy isn’t from an accredited endometriosis centre, although she is a BSGE accredited gynaecologist and laparoscopic surgeon. She also specialises in moderate disease and not advanced (based on my google research)

I don’t know whether to remove myself from the waitlist as I’m so worried it’ll mess things up before my transfer, but then if the transfer fails - I’ll most definitely want a laparoscopy, but potentially down the private route so I can pick an advanced surgeon and endometriosis specialist. Just another decision I can’t decide on 😞😞😞 xx

[SarahMEndo]

I would recommend only doing a surgery by an endometrosis specialist. I have heard many horror stories of surgeries being done by gyno’s that aren’t endo specialist which means they can’t always find the endo or know how to remove the more complicated ones.

(I have stage 4 endometriosis, just have done ivf for the first time, I am supposed to be on a endometrosis operation waitlist, but my operation is complicated as bowel, ureter and ovaries are affected with deep infiltration and large cysts so already on it for a year, but got recommended to do ivf first as removing the cyst could damage my eggs or remove my ovaries and my endo is weirdly not in my uterus or causing period pain).

I would recommend joining a local endometriosis group (I follow mine on Facebook) and people can help you with lots of questions.

[Hidden in reply to SarahMEndo]

Thank you SarahMEndo , how did your cycle go? I’ve been thinking the same tbh which is why I am a bit stressed about it, or I could get them to just diagnose and not agree to any excision? I was diagnosed with stage 4 around 15 years ago and am really unsure of how things are now. I guess if it is severe I’d then be referred on to a specialist team.

This is their profile;

Twenty years experience as a Consultant Reproductive Medicine and Surgery, Infertility, Laparoscopic Surgeon and IVF Specialist.

Areas of interest

Infertility, Gynaecology ultrasound (transabdominal and transvaginal), surgery related to infertility tubal surgery; ovarian cystectomy; excision of endometriosis; fibroids removal; Male Sub-fertility; Polycystic ovary syndrome (PCOS / PCO); Endometriosis; Reproductive medicine; Premature ovarian failure and premature menopause.

Thanks so much for replying xxxx

[SarahMEndo in reply to Hidden]

Hi,

My cycle went well, I am officially pregnant, having my 7 week scan for viability next week which I am very nervous of! This was my first embryo transfer. So feel very lucky it implemented first time. We only get one funded by the NHS in this area so I really hope it all sticks!

The profile seems to focus more on fertility then endometriosis, also is she going to remove endometriosis and are there any other surgeons present? If you are diagnosed with stage 4 endo 15 years ago, why are you having another lap? Or did you have surgery then and now check if it developed again? If you already got diagnosed makes no sense to do a diagnostic lap again? I got diagnosed last year November with stage 4 via a full body MRI read by a known endometriosis specialist. If MRI was inconclusive they would have done a lap, but it was very obvious. And got told to only do the operation with an endometrosis specialist due to it being complicated. (My stage 4 is silent, besides painful bowel symptoms). And I will need it removed, and checked after I complete my family. (That is how they phrased it).

Endometriosis is so hard! So much to navigate. Are you in a lot of pain? And do they think it would help with your ivf cycle?

[Hidden in reply to SarahMEndo]

Huge congrats, so so pleased for you ♥️ I think I actually did know this from another post - my brain is a bit slow these days. 😅 wishing you all the best with your 7 week scan 🤞🏼💫

So it’s complicated really, I was diagnosed with stage 4 via laparoscopy by a general gynae who didn’t remove anything, however, I have seen a couple of endo specialists since I started ivf who through scans and based on symptoms believe it was an over diagnosis and that my endo is stage 2/3.

because I had 2 failed rounds of ivf on the nhs which results in 19 eggs of which 18 were bad quality, the consultant believed I needed my endo checking again and my Endometrioma drained to see if it would improve the outcome. (This was back in May) since then I changed clinics and they said to not do the lap and to continue with IVF with a different protocol, so I did a 3rd round and have 5 blasts frozen. (Much better outcome as had 13 mature eggs)

I’ve had 2 x failed transfers and my endo pain (especially my bowel) has become agonising at times. More so since I started IVF, which I why I’m worrying it’s impacting implantation and if I should have the lap as I am on the waitlist. I’m thinking at least I’ll have a better understanding of the extent of my endo.

My gut is saying cancel and pay for an MRI. Sorry for the essay, it’s so complicated 😞😞😞😞 xx

[SarahMEndo]

no worries for the essay!

The progesterone I am taking has def made my bowel pain worse, but since I am taking it vaginally it has calmed down. It didn’t influence implementation with me even though I was in agony and getting desperate from the pain. (Day of transfer I had so much pain in my bowels).

Well done on getting so many blastocyst in the freezer! We have 2 from a previous freezing only round and 1 from this round. (I did however have a high rate of embryo developing to day 5 when I did treatment to freeze, but not good enough for freezing). My endometriomas are very big, 7cm & 5.4cm and some smaller ones under 2cm.. it is weird knowing they are there. Last round they couldn’t access one of my ovaries because of it.

Seems like a bit of a journey with your diagnosis! And also the failed rounds, I am so sorry to hear that. Must be stressful. Have you looked privately at speaking to a specialist? Even just a conversation might clarify things and your options? They often are around £250. You can send them all your medical notes so you have someone to explain it all? With me, they said they would consider a mini operation if IVF would fail, to improve, instead of the whole thing.. but endometriosis is such an unknown thing still, especially as they don’t really know how it impacts fertility. I did speak to several endometriosis specialist before deciding to go ahead with IVF just to make sure.

Don’t loose hope!

[Hidden in reply to SarahMEndo]

Hi Sarah, thank you so much for replying. It’s incredible to hear of your success with everything you have going on with your cysts etc, it’s amazing ♥️

Do you mind me asking how old you are? I’m slightly worried she isn’t on my side as I am 36, which is why we’re also having pgta testing.

I’ve looked privately and I think I’m going to have a consultation and an mri with a specialist in London, I don’t want to end up having 2 laps if my endo is extensive and this gynae can’t treat it fully - plus I don’t want her damaging my ovaries. I think I’ll do this after one more transfer and pray the next transfer works 🤞🏼🤞🏼 xx

[SarahMEndo]

no worries! I am 35 and 4 months, I don’t think they consider 36 old with IVF. When I did my egg freezing in March when I was still 34, they said we where considered young for IVF. Most people I know that have done IVF where older then I am now or similar age. But I understand your fear as it does cross my mind as well!

Hope the next one works for you. I am currently being anxious as my symptoms went down today.

[Hidden in reply to SarahMEndo]

I just read your post! So sorry you’re experiencing this anxiety, it’s so crap and unfair. I know it’s sooo easier said than done, but try and do some relaxations and things to take your mind off it. Your symptoms slowing doesn’t necessarily mean bad news, it really doesn’t. It happens all the time. I think we’re programmed to think the worse and problem solve - ie try and work out the reason for something, but sometimes there is no reason 😌

You’re right I need to be more positive about my age, I always remember a doctor telling me when I was 19 to have children by 28 🫠 so it sticks with me. 🤞🏼

Wishing you lots of luck and sending love over the next week xxx