Pregnant with 'severe' endo - should I ask to see a consultant?

[roxannepp]

Hello - wanted to get in touch to ask for any experiences of seeing a specialist endo consultant whilst pregnant.

I have 'severe' endo, had an excision 5 yrs ago to remove 2 large cysts from ovaries, and have adhesions attaching my rectum / uterus / pouch of douglas which were left untouched.

I'm concerned that my prenatal care at hospital no-one is really monitoring me, particularly with Covid everything is over the phone except for the 2 scans. I haven't seen a midwife in person and have just been sent a letter saying that they consider me low risk but based on no consultation.

I am now at 20 weeks so am past the early miscarriage risk, but have read several studies about women with endo x1.5 more likely to have a premature birth, and also higher risk of caesarean, and that in general pregnant women with endo should receive more monitoring.

Would be good to know anyone's experience of enhanced monitoring within their prenatal care / suggestions of what I should be asking for, and also any recommendations of specialists I could see privately? Am based in London.

Thank you - Roxanne

[wanwood]

Congratulations on your pregnancy! It would be entirely reasonable for you to request a (telephone) conversation with a consultant because of your history, and I would tell the midwife this and ask for a referral for an appointment. I had an appointment with the consultant where they basically said you’re low risk and don’t need to be consultant-led but at least I had the opportunity to discuss my concerns.

So as I mentioned, I had quite a long discussion with my (obstetric) NHS consultant. The actual risk of premature birth is still very low, and the relative risk is increased in much the same way that it is for IVF pregnancies, but there is no additional monitoring that would be done for that reason either. In terms of the increased risk of needing a section, that in itself is always caused by some other factor, so studies where they find this but no one reason why won’t change normal clinical practice, and it’s difficult to untangle correlation vs causation. Basically, the consultant said that there isn’t any evidence to suggest any particular monitoring intervention to do differently. I would say that the checkups the midwives do before 20 weeks are such a blunt instrument that you haven’t missed out, but I can understand why you’re worried. Measuring the bump is not an accurate way of checking growth, and the other things they do are to check for preeclampsia and gestational diabetes (urine dip and blood pressure), and endo is not associated with those in any meaningful way. If you’re determined to go private I would guess one or two extra growth scans eg at 36 and 38 weeks would find anything concerning. I ended up having a few extra scans because my 20 week scan found placenta praevia. My scan at 38+5 for that picked up something else requiring an induction. We will never know if it would have been fine to leave things to the natural timing (always the problem with more monitoring — more intervention). Sorry I can’t recommend any specialists. Hope this helps! xx

[roxannepp in reply to wanwood]

Thank you so much, this is so helpful and has definitely given me a bit better perspective on the whole thing. The pregnancy was unexpected so I think my head is going at 100 miles an hour! Really useful to know what you experienced and found useful as well. Thank you for writing such a detailed response. XX

[Afrohair]

Currently pregnant with endo I'm 30 weeks and unfortunately we don't have any special care even at request most consultants are specialised in endo removal but not really specialised in endo and pregnancy there just isn't that kind of specialism I was worried about my hormones and needing to take asprin therfore got monitored for this but I did not tell them it's because of endo they happily gave me asprin therapy (read more on asprin online)the issue with endo is getting pregnant not sustaining a pregnancy goos luck and please don't read everything you see and believe it's your case your pregnancy sounds very hopeful if you have any issues you can contact your midwife or triage as we all have almost the same issues in pregnancy as any other person all the best x

(only poster to reply to my comment please)

[roxannepp in reply to Afrohair]

Thank you - this is really useful to read. Yes my own research had mostly found endo specialists in removal so I just felt that maybe I was missing something. Thanks again for posting is really helpful to get another perspective XX

[Sappheiros]

First of all congrats! No experience of pregnancy during a pandemic, I’m sorry this must be challenging, but just to reassure you that I have severe endo and now have a boisterous 2yo who was born naturally and at full term. I had extra nhs scans especially in the latter stages to monitor fibroids. I seem to remember early on being referred to a consultant just to have a check up on endo and fibroids, didn’t need to be referred again - maybe you can ask for this? I also paid for a couple of private scans, just to calm my worries and these felt less rushed than the nhs. I went to The Birth Company on Harley St and I was happy with the specialist I saw - explain your situation if you book so you can be partnered with the right person. Best of luck for it all!

[roxannepp in reply to Sappheiros]

Hello , thank you for posting. I think you're right that some of what I'm looking for is just reassurance. Its really useful to now your experience and what you found useful. I will definitely ask to speak to a consultant at the hospital and see how I get on with that. Thanks again for your lovely message & good wishes! XX