Endometriosis diagnosis - recommendations for specialists

[Skittles11]

Hi - sorry for long message

Can anyone help with endometriosis specialists via DM? I am in the middle of a difficult fertility journey.

I was told a couple of years ago that I may have a small endometrioma on one ovary (approx 12mm). I've been scanned by several consultants and some of them weren't able to see it. So it is unconfirmed whether I have endometriosis. I don't have pain.

I saw a BSGE specialist earlier in the year as I read that they were the experts

The specialist said that I would only need a laparoscopy if I was giving up on IVF and trying naturally.

He was not interested in carrying out an MRI either.

He said endometriosis would not cause implantation failure but adenomyosis could which is why he suggested checking for this via an ultrasound scan.

Is this consistent with what others have experienced?

I am totally confused.

I thought endometriosis can cause implantation failure and the studies I've seen support that. I hoped he'd carry out more detailed investigations.

Has anyone been in a similar position with queried endometriosis and how did you get your diagnosis?

I thought by seeing a BSGE specialist I'd be able to trust in the advice but I feel a bit fobbed off and not certain in the advice I've had.

I don't get how people are getting laparoscopies. Whenever I enquire I get told I don't need one. Maybe I don't need one but I feel super unsure.

Has anyone seen a specialist they would recommend (via DM)?

Thanks, xx

[BloomingMarvellous]

Conflicted information is never easy .

There is a fair bit of information that adenomyosis can cause issues with implantation. Endometriosis can be also associated with these problems but for different reasons which can be progesterone resistance or intolerance .

As far as I have been made aware ultrasound is a poor substitute for spotting adenomyosis especially when it’s the more diffuse presentation. Getting someone who is qualified to do and read this specialist MRI is pretty few and far between - I have been searching myself. I believe there are some available in London but I’ve had so far no luck in nailing that one down.

You might find this a useful book source for self support by Katie Edmonds. Heal Endo which is packed full of sound advice for preconception care with endo.

[hazzahill12]

hi, I have endo and adeno it took about 7 years to get a diagnosis and I’d had laparoscopy and still they said I didn’t have it, even tired IVF and they said I had a sub mucosal fibroid which was then deemed as a band of cells once I had another laparoscopy all of this was by general gynaecology drs. Nothing worked and I just kept getting told it was low ovarian reserve and I needed donor eggs. My marriage then broke down and I took a year off everything, I was already 32 and had started this all at 25. When I met my current partner we started again with fertility investigations ready to try treatment. I’d been getting what I thought was urine infections but after a while my gp suggested this was in fact pressure pain from endo which he could see they’d said I had very mild endo apparently after a laparoscopy he then said a specialist centre had opened in the last year and I was referred to a specialist in endo and they sent me for ultrasound which picked up both endo and adeno but the person. Scanning said it could have been missed if it was a junior dr scanning. I then had an MRI to confirm both finally I had a diagnosis. I then had laparoscopy by the specialist to see if any could be removed unfortunately for me I had a large lesion of adeno at the fundus of my uterus likely what was previously thought to be a submucosal fibroid or band of cells! He didn’t want to remove as the risks of loosing my womb altogether were significant high due to location etc. he suggested at least 3 rounds of IVF using the correct protocol for my diagnosis and to have zoladex for 3-4 months prior to this. He felt the adeno was responsible for a unfavourable womb environment and the endo was the cause of poor eggs, both causing a hostile environment for eggs to fertilise and travel down would be endo and once they or if ever reach the womb would meet a hostile environment to implant. The IVF drs were baffled as to why he was insisting I had IVF with this adeno there gave me 1% chance of success.

I don’t know if any of this is any help but I guess what I’m trying to say is only a specialist diagnosed mine by this time I’d spent 7/8 years not really knowing and nothing had worked.

Although I had low egg count I still got 3 each collection and at least one made it to blastocyst, unfortunately neither transfer worked and I had one cycle and one blastocyst frozen left. I then amazingly conceived naturally, twice. My little boy is 16 months and my little girl is 8 weeks today. They are complete miracles. I truly hope you get yours.

I wish you all the best Xx

[Skittles11 in reply to hazzahill12]

Thank you for this

It sounds like you had a long complex time of it

I started TTC at 33 and am now 37

I have low ovarian reserve and a number of other contributing factors such as TSH more than ideal

The endometriosis has always been queried by my fertility doctors but they always say I can continue with IVF as the endometrioma is teeny. They down regulate me for a month prior to transfers and have me on high progesterone.

But then how do they know it is not more widespread than just one endometrioma, as endometriosis can't always be seen on a scan?

Do you mean that the endo specialist recommended IVF with 3-4 months of down reg but the IVF doctors felt it wouldn't work because of the adenomyosis?

Can I ask you which endo specialist centre you ended up with in the end and would you say they had good patient care (i.e did they listen to you)? Could you DM me the name?

Thank you

X

[hazzahill12 in reply to Skittles11]

Thank you, yes I have as it sounds like you have and are still having.

So then endo specialist advised zoladex prior to IVF and the IVF drs just didn’t believe I was even trying a transfer with the adeno they felt I should just be doing collect all cycles. They agreed with zoladex felt it could help egg quality.

Having cycled without it years ago but on the short protocol and much younger and got nothing. This time much older was 34 & 35 when I did my cycles. I think it made a difference but will never know not having used it and done cycles with the long protocol and just busereline to down reg. I just feel the zoladex followed by down regs helped calm everything down.

I will DM the place I went. Xx

[a_86]

It sounds like we have the same consultant...

I'm 37 and in the last 18 months have miscarried twins, then 'missed' miscarried and have recently have had an ectopic pregnancy. The recurrent miscarriage checks after my second miscarriage found I suffered from an underactive thyroid which is now treated however my next pregnancy unfortunately resulted as an ectopic and the labarascopy for that emergency surgery also diagnosed me with endometriosis in numerous places. The endo was a complete surprise considering I have not previously suffered any pain and I currently have exceptionally light periods to the point I worry about implantation issues and I was pushing for progesterone on my previous pregnancy to aid the progress.

The surgeon after my ectopic who removed my left fallopian tube and also found the endometriosis by chance (found in POD, abdominal wall and uterosacral ligaments) said with certainty that I required surgery to aid my fertility and they would fast track me for a consultant appointment due to my age and miscarriage history.

Three weeks later I'm sat infront of the gyanoe consultant who saw me for my previous recurrent miscarriage checks and it was obvious he hadn't read my notes from when we'd last met. When he asked how I was I simply said - oh well a lot has happened since we last met, an ectopic and endometriosis diagnosis isn't ideal and he plainly said 'who told you you had endo...?' Long story short, after catching him up on my medical history and me asking about the necessary future surgeries I was previously informed I needed, he simply dismissed this as unnecessary unless I was in pain and stated that many women manage to conceive successfully with endo and so I don't need to do anything at the moment and should try to continue trying to conceive naturally. I left the room saying oh well, 5th time is the charm and it hasn't killed me yet!!

Like you, I am at a loss with conflicting information and disbelief that I have no future steps but apparently Dr's know best so... hopefully mine and your stories ends with good news.

But please push with the doctors because you seem to have to tell them their jobs...