Laparoscopy found no endometriosis - what now?

[beezlebubnicky]

Hi,

I had a laparoscopy today for suspected endometriosis. I've had awful symptoms for years - heavy and irregular periods, crippling pain including knife-like bowel pain and pain during sex. Constant anaemia and exhaustion despite iron supplements. Finally managed to get GP to take me seriously and was referred to a really experienced gynae who said based on my symptoms we should go for the lap - and I had all the classic symptoms of endo.

However, after having the lap, when I was coming round (and crying loads from the anaesthetic - had a bad reaction), the registrar visited and said they hadn't found any endometriosis and my pelvic organs looked very healthy. The only thing they did find was some scarring in the pouch of Douglas, which they said could indicate I've had it in the past. I was using the mini pill until a few weeks ago to control my symptoms, so that may have suppressed it.

But as far as the hospital are concerned, that's it. I'm glad it's good news, but is it silly to feel sad and disappointed I put myself through this procedure only to find nothing was wrong? 🙁

I'm not even going to see the consultant or any other doctor for follow up now, they said I'll just attend a nurse-led clinic in a few weeks. I really wanted to ask my doctor more questions.

IMPORTANT: Because I know people will quite rightly wonder about this, I had the lap at a BSGE accredited endometriosis centre, and the gynae who performed it is a very experienced researcher in endo and laparoscopic surgery. So I'm sure they knew what they were talking about.

Hi just wanted to update the thread.

My letter has come through and to my surprise, I'll be having a phone call with the consultant, rather than the nurse-led clinic as they had suggested.

It isn't until late March and it's over the phone, but it's better than I was expecting. I'll write down all my questions ahead of time and try and push for an MRI.

I'm recovering well, but currently having my first period since the lap/Mirena insertion and it is EXCRUCIATING. Like, so bad - I'm curled up in a ball and needing to add codeine to my ibuprofen. Apparently it can be normal for first couple of periods to be worse after having surgery in that area, with things internally needing a bit more healing time.

Many thanks again to those who gave advice and were willing to share experiences.

Thought I'd come back and update this thread:

After a shit follow up with the endometriosis specialist nurse a couple of months ago where she dismissed my concerns and said there was nothing found and nothing to be done, I finally got another follow up phone call with the gynae who did my operation back in January.

She took a lot of time to explain things to me. As the Mirena coil has made my recent periods lighter (although 4 months in, I'm still getting a lot of frequent irregular bleeding), she thinks it's obviously working and that it may need a bit more time to fully stop my periods. She's going to prescribe norethisterone as well to help with this.

As my symptoms have responded to the coil and she didn't find endo during the lap, she thinks it's most likely adenomyosis, deep in the uterine muscle where she wouldn't have been able to see it. So at least I feel like I'm not crazy! And I have noticed an improvement in a lot of my symptoms. The first couple of periods after the lap were horrendously painful, but both the pain and level of bleeding have improved since then - no more worries about leaking through my clothes or not being able to sleep through the night due to heavy flow.

We also talked about the interstitial cystitis I've experienced for years, where I have constant urgency, pressure and pain in my bladder. I've had a couple of cystoscopies and a bladder biopsy a few years ago that found no-specific inflammation, no infection. She's suggested amitriptyline to see if that helps with the nerve pain I'm clearly experiencing in the pelvic region.

So I am feeling a little better, although still quite upset that it took me 4 months to get any proper follow up after my surgery. Thanks again to those who were so kind and offered good advice.

I was diagnosed with endo in 2005 went on zoladex and hrt like another poster had 2 laps since that consultant also suspected adenomyoisis in 2021. Im under consultant again atm. I was prescribed amitriptaline in November had a few increases of dose and at times it helps slightly at times for the endo to a point but they are yet to find a combination of medicines that control my endo or to contol my pain.
I really hope it works for you If not my best advice is keep fighting your corner and have a family member or close friend that will help advocate for you when you find it difficult.

@beezlebubnicky Thanks so much for updating. I’m glad to hear you're experiencing some relief of symptoms now although it’s pretty shocking that you were left for 4 months without proper feedback. I think it can take a while for things to settle down after a laparoscopy + Mirena (that was my experience anyway) but it sounds as though you’re responding to that line of treatment, which is encouraging.

I hope they continue to look for a more specific diagnosis and treatment, though. And that you carry on feeling better.

My first lap didn't find it, I had only consented to a diagnostic lap & my consultant told me I had pelvic inflammatory disease but he found an ovarian cyst which I had a second lap to remove & afterwards he came to apologise as he had found eviosis during the second lap.dence of endometri

evidence of endometriosis I had a hysterectomy 6 months later

Thanks @Pilcrow . Seems like adenomyosis is the culprit so really the Mirena is the main treatment. The follow up was definitely shocking, go figure in the Tory NHS!

@Nat6999 I'm sorry you had such a terrible experience and hope things have been better since the hysterectomy.

I'm sorry to hear of your difficulties. My symptoms seem to have improved a lot for the time being, I just wish my periods would stop fully! I know for 30% of women, the Mirena doesn't stop them...need to give it more time I think.

My dd had suffered terrible pain and extremely heavy periods and she had Lap aged 16 and nothing was found. She was put on Depo injections however still continued to have ongoing pain. Her symptoms were very similar to yours.

She began to research Endo and specialist consultants and arranged appointment with consultant in private hospital and explained that she had had a Lap previously but felt she had endo in bowel that was missed as she has all the symptoms. Consultant arranged Lap for her and she got diagnosis of Endo in two places which were removed.

My dd never gave up after the first lap and said she knew she had undiagnosed endo and was fed up with being fobbed off due to her young age.

Never give up and follow your instincts. Best of luck.

Only thing that stopped mine was contraceptive injections but i still had growth.
I bit the bullet so to speak and stopped them in February to ttc pains been awful at times but in general i feel better without the added hormones. Its an odd one but ive learnt to live with it to an extent.
Im pleased thats helping you hopefully it gets to the point where periods stop and your pain free. I'd definitely recommend going back to gp and fighting for another referral if the pain is bad.

Unfortunately its common to be fobbed off. It took me 4 years to be referred to gynae with weekly gp visits and many misdiagnosis.i had my diagnosis at 19. Good on her for researching and fighting i wish her better luck in future

What about adenomyosis? It's not discoverable on a lap (which only examines outside the uterus in the pelvis), but is visible on a scan of the uterus. A gynae needs to be investigating for that as well, it's not good enough to just check for endo.

Hey OP, scaring on the pouch of Douglas is a classic indicator of Adenomyosis. Gives similar pain to endo. Unfortunately there is no cure, hormone therapy can suppress the symptoms.
Do not let anyone put you on zolodex!!! It's evil. Sending sympathy and get a follow up asap. I have Adeno, it's hell.

Thanks for kind words @Perpetualstateofchaos hope you are doing ok.

@Hop27 @Speedweed - yes, I mentioned upthread that in my most recent followup with the gynae she does indeed think the culprit is adenomyosis. I've been on the Mirena coil for 4 months now, and she said the fact it's helping with the symptoms tells her it probably is that, as no endo was visible. I just wish I wouldn't get the random spotting and bleeding all the time, it drives me nuts - still, a vast improvement on the heavy bleeding and horrific pain I had before. She says I need to give it more time and the bleeding might stop entirely.

Interesting that the scarring in the pouch of Douglas is indicative of adenomyosis particularly, I didn't know that.