Unexplained infertility, IVF and endometriosis - London hospital experiences

[roamingcat]

Hi all,

My husband and I are early 30s and have been TTC for 18 months with no success. We recently did a private round of IVF and are waiting to start our first FET cycle. They unexpectedly found a polyp which I needed to have removed which has delayed things a little.

I have read a lot of sad stories about people who have unexplained infertility and find out they have endometriosis after multiple rounds of failed IVF, so I decided to have a specialist TVUS to check. To my surprise they found deep infiltrating endometriosis! The advice given by both the endo doctor and our IVF clinic is to try a FET and see what happens, before considering surgery.

I’m keen to understand if anyone has been in a similar position and if IVF worked before having surgery. I’m also going to get added to the NHS waiting list (although I’m not expecting to be seen for years) so would be interested in hearing experiences from anyone with any of the London hospitals. I have a choice of hospital referral because it is DIE. I have no idea if the NHS would actually fund surgery because my only severe symptom is infertility?

I was kind of similar however we also had MFI. We do have an existing daughter conceived naturally by some miracle as my partner should never have been able to have kids. She’s nearly 6 now and we’ve been trying for a sibling pretty much since she came out of the womb. Last year we decided to go down the IVF route and again they told me I was fine and kept pinning it on my partner as his sperm count had dropped to nearly 0. We done our first round and x2 failed transfers. Something was telling me to get myself checked for endometriosis even though the clinic kept telling me I was wrong. I had a private consultation and MRI with an endometriosis surgeon, turns out I had stage 4 and DIE. It was on my ovaries, uterus, cervix, pouch of Douglas and my bowel was adhered to my cervix. Again my clinic didn’t care less but fortunately my surgeon was also a fertility specialist and he recommended before transferring our last embryo to have the surgery, so I did. I had the excision surgery in May and my last transfer in July, so far that transfer has worked 🤞🏻 he also told me what protocol and stuff I should be on so I followed absolutely everything he said and ignored my clinic x

Just wanted to share that like @Cornish13my IVF consultant also recommended surgery before IVF. He said that the IVF medications can sometimes worsen endometriosis - I assume this is because of the big oestrogen surge but didn’t discuss it with him

A friend of mine saw the same IVF consultant a year before and didn’t want the surgery, but they then had to cancel her egg retrieval cycle part way through as her endometrioma grew from 4cm to 11cm and she needed an urgent laparoscopy

I can only speak from my own experience but I would personally do the surgery first. It’s a keyhole surgery and I personally felt pretty much back to normal within a week. The surgeon said after my op it would have been very hard to conceive without it. Also I found the FET meds pre transfer really difficult and I’ve also had a miscarriage before, so I just would want to know id put my best foot forwards before the transfer before putting myself through that

The other thing too is endometriosis obviously affects every woman differently, but there were symptoms I had I didn’t even realise were from endometriosis which vanished after the operation

Wishing you all the best xx

(edited for typos)

Thank you for sharing this is really helpful. The challenge is that because we would need to do the surgery privately and we’re in London, the costs are huuuuge! It’s also tricky because both our IVF clinic and the endo specialist said they wouldn’t recommend surgery for me now, but I do see so many stories of people needing the surgery to get there. If you had your surgery in/near London could you message me with where you had it done and the cost? I’m trying to collect recommendations whilst we work out what to do.

Thank you for sharing - we also have mild male factor which makes it a bit more complicated but because it’s just the morphology and everything else is good, they’ve said it’s probably not that. I’m so pleased you had a positive outcome in the end.

@roamingcatif you want a second opinion I would really recommend seeing my consultant Colin Davis. He did both my endometriosis surgery and my IVF after. He’s quite unusual in that he bridges fertility and technical gynae surgery and is an endo specialist, but I do think that gives him an edge (as gynaes lean either fertility or general). He used to run the NHS fertility clinic at St Bart’s alongside his private work but has also now set up a private one called The Evewell. So he understands bridging private and NHS well too. And he’s an endo specialist. He’s done some tricky surgeries on a couple of my friends too. He explains things really clearly but at the same time has a really kind manner

If you book one of his fertility consultations at the Evewell it’s quicker than waiting for a general gynae consult with him.

I actually don’t know the cost of my surgery as luckily my insurance would pay for it as I was symptomatic. It doesn’t cover anything fertility or pregnancy related normally.

It might sound a strange question but are you sure you have no symptoms? I had this pain I thought was coming from my bladder and bladder issues but it was endo. Also I got swelling in some joints as food reactions to certain foods like chilli - that stopped after surgery and I hadn’t connected it before. And I had also this low level constant pressure in my lower abdomen that was ‘normal’ for me - as soon as I came around from the surgery it was gone. I also had sludgy dark bleeding between periods sometimes and I had been told that was a cervical ectropian but Colin said it can be another endometriosis sign. I also had these horrendously painful but relatively small cysts that would bleed or burst and was told they were “functional cysts”, a bit frustrating as they were actually endometriomas.

Wishing you all the best with everything xx

https://www.evewell.com/team/mr-colin-davis/

edited for typos

I think you have to go with your gut on this one. I have deep infiltrating endometriosis in my bladder and bowel, but it’s less severe on my fertility organs. Due to this, my dr recommended we try ivf before going ahead with any endo surgery. I’ve also got low AMH, a blood clotting issue and my husband has some MFI.

We ended up needing 4 rounds of ivf (largely due to low AMH keeping egg collection low), and 5 transfers (3 failed implantation, 1 miscarriage and 1 success). However, we now have our baby, embryos in the freezer, and I still have endometriosis but the change in hormone levels / lack of periods since getting pregnant mean that my pain levels are (currently) non existent.

it’s possible that having endo surgery first may have helped one of my 3 failed transfers to implant but by that point I just wanted to crack on with IVF rather than wait for surgery and recovery. Luckily, it all worked out for us in the end. Sending you baby dust!

I'm delaying starting IVF after getting a diagnosis. Mine is silent endometriosis so no classis symptoms but have some digestive issues which could be related.
My Laparoscopy will be covered by insurance but was about £5.5k (Midlands)

Thank you for sharing, this is really helpful and it's so helpful to have a specific recommendation of someone who bridges both areas!

Upon reflection I think I have a few of the less "traditional" symptoms - an overactive bladder, spotting before my period, and I do get bloating and digestive symptoms during my period (but I also have crohns disease so it's hard to know what the true cause is). My periods are also painful for the first day, but I usually get through with a combo of painkillers and buscopan, rather than it being debilitating.

Thank you xx

I'm so glad it worked out for you in the end, this gives me hope - thank you for sharing xx

Best of luck with the laparoscopy! If I had insurance I would be more inclined to delay, but sadly I don't so will be self paying for it alongside IVF (and a recent polypectomy - if anyone who conceived naturally ever moans to me about how expensive kids are I will have to grit my teeth haha)