No endo on MRI - what did they find on your lap?

[Endofitall]

I’ve suffered for years since my periods started and had a “probable endometriosis” diagnosis based on symptoms and response to medical treatment.

with trying to conceive and coming off meds I’ve had worsening pain for past few years and lots of failed IVF cycles.

My symptoms are mainly bowel and sciatic related, worse with period and ovulation but becoming more constant recently.

They’ve done an MRI (I just had buscopan to quiet the bowel but no bowel prep or contrast etc) which showed some adenomyosis but no deep endo. I’m now scheduled for lap soon as I’m in a lot of pain, and also hopefully to help fertility.

I just wondered how many out there have had normalish MRI to then have endo found at lap?

[AllthatGlitters]

hello I had an MRI which showed adenomyosis and then a laparoscopy which showed endometriosis. I know you definitely need a lap to check for endometriosis. Hopefully you will have some answers soon 💛

[Endofitall in reply to AllthatGlitters]

Thank you for replying. I hope you are doing okay. That’s interesting you also had adenomyosis on your MRI.

[Vee2508]

I had an MRI in June of this year and wasn’t told much other than the fact that they found some endometriosis on my left ovary. I was offered a laparoscopy or Provera but decided to try the Provera so I don’t really know how severe it is. I really hope that the laparoscopy helps you, you should definitely ask if they’re going to do an excision or an ablation as the excision is usually much more effective as they remove the endometriosis from the root, whereas, the ablation only burns the tissue.

[Endofitall in reply to Vee2508]

thank you. I hope you have a good response to provera. I had a drug continuously which is a type of progesterone and that stopped my periods and pain. I can’t go back on it now though unless we give up trying for baby. The person I’m seeing is a BSGE endo specialist and has consented me for excision - thanks so much for checking.

[1880emma]

I had a scan , ultrasound. Was told Adeno. The gynaecologist didn’t want to do a lap but I pushed for it and they found endo in several places . Push for what you want

[Endofitall in reply to 1880emma]

Thank you. I must admit I don’t want surgery and just want to crack on with next IVF cycle. But I am losing more days off work to pain and qualify of life terrible. There’s also potential IVF just won’t work til sort this out. How did you feel post lap? I’m scared I’ll do it and my pain won’t be better. I’d have just missed a few months of potential fertility treatment.

[RosieFalkor]

I didn’t have an MRI but I had a CT which only showed a cyst and 7 ultrasounds. On the last ultrasound they thought the cyst might be an endometrioma. They arranged a Lap and I almost cancelled it because I was convinced it was a waste of time. The Lap found Stage 4 Endo which had spread everywhere including my diaphragm! I’m glad I didn’t cancel now 😆

[Endofitall in reply to RosieFalkor]

Gosh that must have come as a shock but thank goodness you went ahead. Hope you’re doing okay x

[RosieFalkor]

I’m ok thanks. It was a shock - only had the lap 2 weeks ago. I’m glad I know why I’ve been so uncomfortable now tho

[Anastasia17]

Hi. Based on my own experience in the UK, all depends if the MRI Scan is performed by a sono/radiographer specialised in endometriosis or just gynaecology. If it's just gynaecology, they won't know where to look and what to look for. It's like sending a cancer patient to a general MRI Scan which is deemed completely unacceptable and quite rightly so. It also depends who reads the MRI results. I had an MRI scan in the UK that returned a completely negative results of endometriosis/DIE. I then went abroad to an endo specialist centre where I had another MRI Scan with a sono/radiographer specialised in endometriosis and was diagnosed with DIE. In the UK, they have difficulty accepting the results from someone else that contradicts their negative findings. Often, endometriosis is found by lap, but with an endometriosis specialist, not a gynaecologist/a gynaecologist who claims to have 'an interest in endometriosis'. We all have this interest. Good luck.

[Endofitall in reply to Anastasia17]

thank you. After reading about protocols for MRI to look for endo and radiologists being specially trained (mind was done in local hospital UK with no specialism and just done with standard protocol) I realise the chance of them finding stuff was much slimmer. I hope you’re getting some answers and progress now 🤞🏼

[Trekkie84 in reply to Anastasia17]

Hi, bless you. My sister has been diagnosed endometriosis 15 years ago (after suffering since puberty)and she's had a very similar experience. She's gone to everyone and tried everything and I subscribe word for word. Why don't we get this type of advice more often but we are left to make attempts? 😮‍💨 I am now also diagnosed through MRI and I have very little trust in that report, which shows mild signs of endo. I will insist to get lap with a surgeon expert of endo.

[Endofitall]

just thought I’d update this in case others find it in future - my lap showed endo around left pelvis/ ovary and affecting the rectum. Don’t give up on getting answers!