Laperoscopy showed endometriosis when clinic and doctors told me I didn’t have it.....

[Telford1]

I am feeling pretty annoyed. Have just had a laperoscopy which showed I had endo by the outside of my uterus. The IVF clinic advised against laperoscopy as they didn’t think I had it (they can only check for tubes and ovaries).

I have been through two failed rounds of IVF - both of which could have contributed to failure due to the endo being there as It creates a hostile environment.

I am feeling really pissed that the clinic, which was a nhs private team didn’t recommend laperoscopy first. Yes it’s surgery, but it is so much less difficult than IVF which as we all know on here is emotionally and physically draining.

I had to pay privately to see the consultant as the NHS didn’t think I had it, who then told me there is no possible way for clinics or doctors to know if you have endo, other than doing the laperoscopy. As ever we are in the hands of the NHS and believe what we are told- until you speak to the right person.

No idea if I will get pregnant as a result of this, but I’m more just really annoyed that’s IVf was Potentially wasted as they hadn’t recommended in this initial check, just went for the money making ivf. I feel really let down and sharing to raise awareness with this group.

Has anyone else experienced this?

X

[MightyB]

Hi, sorry to hear this. I had similar where before we started IVF I told them I believed I had endo and asked for a laparoscopy but they said to go ahead and try IVF first anyway as they didn't believe me as I had no pain during sex, only agonising periods. We had to do IVF anyway due to MFI.

After the first IVF cycle failed I demanded a laparoscopy and got one. They found endo (but in my pouch of Douglas near the rectum) and adenomyosis too! They burned off the endo but you cannot remove adeno as its part of the womb itself. Although they said it was mild enough it wouldn't affect my chances, I went on to have another IVF round, got pregnant but miscarried at 8.5 weeks.

I am very angry that I'd been complaining about period pain for 20 years and being fobbed off because scans showed nothing.

I understand how you must feel about wasting two IVF cycles to then find endo. Did they remove your endo and so do you feel you now have a better chance?

[Telford1 in reply to MightyB]

So sorry about your miss carriage, so sad. Hmmm that would make me angry too for 20 years asking and being robbed off.

I feel there is a real lack of awareness of what endometriosis is and how it impacts.

Did you have a sore back? I read the rectum endo could cause pelvic pain? I have had considerable back pain which i out down to a sore hip but since the op it feels better.... perhaps just the pain killers tho!

They did remove the endo, and because the dye and lap process gives a proven spike in fertility for a few months after, there is a increased chance we will conceive as we were unexplained infertility.

No idea if it will work and keeping my head on about that. My expectations are low, but morale is improved.

It feels good to have a more relaxed timeframe than the stressful two week wait.

Best of luck for tomorrow. X

[MightyB in reply to Telford1]

I didn't have back pain generally but when I had period pain it hurt from my belly button all through to my back, and right down to my knees!

I still have period pain since the op but it's now bearable with lots of painkillers.

Good luck!

[Core]

How frustrating for you!! Did you have any symptoms that made you suspect endo? Just asking as someone with unexplained and 4 failed transfers and wondering if there are any questions I should be asking xx

[Telford1 in reply to Core]

It is hard to tell re symptoms as I have some arthritis in my hip, which can transfer pain to back and back pain is a sign. I have never had any other endo symptoms at all. It is possible to have no symptoms of endo and still have it. Infertility is a sign in itself.

A laperoscopy, if nothing else, would fully explore and write off that option.

As my consultant said the only proper way to check you don’t have endo is with the laperoscopy.

It is quite an expensive procedure so you may need to push via NHS, or if you have private healthcare I am told it can be covered as exploratory fertility- depending on your policy.

It may make no difference to us on our journey, but every little helps to explain the unexplained infertility.

Good luck. X

[Core in reply to Telford1]

Thanks good luck in your journey hope it helps xx

[MightyB in reply to Core]

Only symptoms I had was bad period pain...