Endometriosis - recommendations for specialists

[Skittles11]

Hi - sorry for long message I am in a bit of a hole and the way I have to cope is to keep looking at moving forward

Can anyone help with endometriosis specialists?

I have had another recent implantation failure after a horrific 4 year fertility struggle. No live birth. Loss along the way.

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 was worried about it so earlier this year I went to see a BSGE specialist. He said if I was continuing with IVF treatment I can:

a) check my tubes (done)

b) check access to the ovary (done)

c) check for adenomyosis (not had this done specifically but I've had tons of ultrasound scans).

He said these things would be checked by ultrasound scan and the letter I had suggested this is an external and not an internal scan.

But I've already had many ultrasound scans albeit not by endo specialists.

He 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.

Is this consistent with what others have experienced?

But I am totally confused. And I don't know if I even have it.

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 eith 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

[Nenad]

Hi Skittles, sorry to hear you don’t have concrete answers. Can I ask in what part of the country do you live? I have an endo specialist who’s brilliant but she’s in the South East. Had a laparoscopy with her which helped us conceive naturally at the time - I had severe endo so I needed the procedure xx

[Skittles11 in reply to Nenad]

Hi Nenad

I'm in the Midlands but am willing to travel if it means I can get the right support and good advice. I am interested in addressing potential endometriosis to support with implantation using donor eggs Xx

[Nenad in reply to Skittles11]

Have just DM’d you. I’m still with her, she’s great. She does IVF as well so she’s familiar with it all and can help guide you xx

[Laurapax in reply to Nenad]

Hi there, sorry to jump in but would you mind sending me the details for your endo specialist please? I am on the ivf journey after two natural miscarriages and need to understand my endo condition (undiagnosed but diagnosed by myself after all the poor results to date) and period / hip pain. Thank you so much xxx

[Nenad in reply to Laurapax]

sure will PM you now xx

[Jess1981]

Hi. I'm so sorry to hear of your struggles. I have endometriosis in 2017 - it took 5 years 10 months of infertility to eventually get diagnosed which was found by laparoscopic surgery. After it was diagnosed we had our first BFP naturally but was a chemical pregnancy and it re grew so another 2 Laps last one by an endo specialist ( who I am happy to send his details) and we went onto have our eldest daughter Francesca who is now 4 and after a late loss and 2 early miscarriages we had our youngest daughter Eliza who is 17 months old. Without this surgery I wouldn't have my girls. I am forever grateful to this surgeon who I did send photos of my girls together 😍 Endometriosis doesn't always cause infertility/ implantation it depends on location and severity of the disease. My endo did cause both but once treated we did get our family after a long struggle ( mind grew on pouch of Douglas, uterosacral ligaments and rectum) so caused gynae and bowel issues so was more difficult to diagnose. A laparoscopy is considered gold standard for diagnosing endometriosis. Even the fertility specialist didn't think I had endometriosis but had to rule out gynae ( as I had many issues with my periods) so offered me the choice-1- keep trying naturally do nothing , 2- have a laparoscopy with dye test, drill ovaries ( he didn't as they weren't pcos) and check/treat endometriosis or 3- self fund IVF ( we couldn't access funding) we chose 2 best decision we ever made. To say endo doesn't ever impact fertility or implantion isn't right. I would get another opinion. Wishing you the best Xx

[Blueberry211]

Laparascopy is the gold standard to check for endometriosis. The implantation failure is caused by adenomyosis- this is not always visualised by ultrasounds as it is dependent on the technical specialisation of the doctor carrying it out. MRI shows adenomysis and endometriosis

[Skittles11 in reply to Blueberry211]

Hi Blueberry Hope you are okay and thanks for the reply

To confirm, is your understanding is that implantation failure can be caused by adenomyosis but not by endometriosis?

Thanks x

[Blueberry211 in reply to Skittles11]

Yes. Adenomyosis involves the wall of the uterus ( the inner wall which is involves in implantation) hence it affects implantation. Endometriosis involves areas outside of the endometrium- and hence wont affect implantation. Some people have a mix of both adeno and endo and that is what affects implantation. I know a lot of ppl who had deep endometriosis but did not involve the endometrial wall and went to have successful pregnancies without ever having to go through the laparascopy and treatment. I know people who had MRI and then were treated with Lupron for endo/adeno and went on to have successful pregnancies. I cannot understand why they didnt offer MRI which is non invasive. Have you pgt tested the embryos?

[Christianbaby]

I would recommend a specialist to you but he's in Cyprus is a clinic called Dunya IVF. That's where I had my egg donation.

[Laurapax]

Hi Skittles11 i hope you are ok. I’ve recently joined this platform continuing my fertility journey after two natural miscarriages now going down the ivf path at 37 with low AMH and AFC. It’s been a shocking year. Going in for my egg collection tomorrow with only three responsive follicles it’s not looking good let’s be honest is it. Since this whole sorry ttc started 12 months ago I am absolutely convinced I have endo (I had painful ish periods) some months ok, some not but put it down to being normal, although my periods are not heavy so assumed I was ok, but over the last year or so I have bad hip pain in my left hip with some nerve pain running down my leg. Prior ttc I thought it was sitting down at a desk etc and I used to do a lot dance so thought it was achy hip but now putting everything together with miscarriages, low everything and pain I have self diagnosed endo. I am waiting for a pelvic scan on the nhs but reading on this forum it sounds like I will need an mri / lap to get confirmation.

How did you get on with consultation recommendations. Did you have any progress? if I would be very interested if you wouldn’t mind sharing any feedback or recommendations?

I am so sorry you’ve been through such a terrible time over the last 4 years - I am only a year and a bit in and I already feel a completely depressed, sad, scared and overwhelmed about the future and can’t believe I left ttc until I was 36. I am such a fool. I am so worried that with endo I will never be able to carry a baby to term and it wasn’t even something I was aware I had until last few months.

Wishing you well, by the way I am also on exploring of donor eggs as I have no faith in my eggs and we haven’t even collected any yet! What a nightmare xxx

[Skittles11 in reply to Laurapax]

Hey I will drop you a message xx

[Laurapax in reply to Skittles11]

Thank you so much I really appreciate it. Feeling all kinds of awful at the moment. Got 3 mature eggs at EC yesterday and they all fertilised so got to take that as a win I suppose. Hope you are doing ok xxx