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.

"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".

"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".

I would contact PALS about your experience as detailed above because this should not have happened. Its not at all acceptable and you need a follow up preferably with the consultant who performed the lap rather than just attend a nurse led clinic. You're being fobbed off here big time and the fact too this surgery was performed at a BGSE centre (was this a NHS hospital) is also appalling.

They did find previous scarring on your pouch of Douglas so endometriosis may well have been present. You've also not spoken to the gynae who performed this op; it was the registrar. Even experienced gynaes can miss endometriosis deposits and it does not always present typically.

Something caused those symptoms to happen and there was
and is a physical cause. Pain during sex for instance is a potential indicator of endometriosis being present.

I’m so sorry you’re in this position, OP. It must feel like the worst possible outcome to have had the laparoscopy at a centre, and with a gynae, experienced in endo, and still get what sounds like a failure in communication and an unacceptable level of information.

All I can say is that when I was still groggy from my laparoscopy, and not really taking much in, the gynae (who wasn’t an endo specialist) came and told me he 'hadn't found any active endometriosis', but added that everything internally had been 'stuck together'. It was the anaesthetist who came by after that and told me that the gynae had had to do 'a lot of cutting' (so no wonder I was out of it).

I ended up with 6 months of Zoladex injections to stop my periods, then a Mirena, because the so-called non-active endo clearly was active. I then consulted a specialist privately who took literally one glance at the photos taken during my laparoscopy and told me I had Stage IV endo. None of this had been pointed out by the gynae doing the procedure.

Sorry for going on about my experience but I just wanted to illustrate that it can be overlooked. I agree with Attila - I definitely think you should be seen by the surgeon who did the lap, not just the registrar. Did they take any scans/photos, do you know?

Thank you for taking the time to respond. This was my instinct too; I'm so glad to hear I'm not crazy! In my experience the NHS don't seem to deal with complaints very well, if at all - but perhaps I will contact PALS in this case. I really do feel let down and fobbed off.

Although they put a Mirena in so I'm hoping that might help with the symptoms in the meantime.

The gynae did tell me that in 50% of laps for suspected endo, that nothing is found, so I knew it was a possibility. It was just weird and it made me wonder if I have some kind of atypical presentation.

@Pilcrow That sounds like a dreadful experience - so glad that someone properly picked up on it after it was missed. You've been through a lot.

The thing is, I did see an endo specialist so I don't feel I have many places to go from here other than insisting on a follow-up with her.

Thanks @beezlebubnicky - in fact the Mirena did work wonders for me so fingers crossed it’ll be similarly helpful for you. I still feel that talking direct to the person who did your procedure would be a good idea, though. There are so many hoops to jump through with endo - I’m not remotely surprised that it takes something like 8 years to get a diagnosis.

@Pilcrow Good to hear re: Mirena, fingers crossed for me. Do you know how best to actually arrange that - who would I speak to at the hospital? I have the email of the consultant's secretary so I could try that, very diplomatically.

I would email this person requesting a follow up with the consultant. I would at the same juncture contact PALS re your recent experience. If your experience can stop another woman from getting the same crap level of "care" post op (and it is indeed poor practice on the part of the hospital to speak to women about their lap op findings when they are in the recovery room) then its also worth doing.

It may also be an idea going forward to see a gynae for a second opinion as a private patient via your local private based hospital.

I feel you need to fully recover from surgery, collect your medical/surgical records (including any/all photos you have from surgery), and gather the strength to find another surgeon.

Hi @AttilaTheMeerkat thanks for the advice. I think I will do both those things - I don't want someone else to feel like I did in recovery (especially when I was already off my t*s from the anaesthetic and crying). It was South Tees NHS trust btw.

I've actually already seen a gynae in the area as a private patient for an initial appt - obviously you can't queue jump anymore onto their list, so he wrote a letter to my GP with recommendations. I was initially referred to him, but then was moved onto his colleague's list. It took 47 weeks then for this initial consultation on the NHS where I was referred to the lap. He works closely with my gynae at the same hospital and they're pretty much the best ones in the area and the most experienced - so I'm not sure there's anyone else to see.

I would like to know why you were moved onto his colleague's list rather than remaining on the initial list.

have a read through also of the Endometriosis UK website
www.endometriosis-uk.org/

This may also be helpful to you
www.bsge.org.uk/requirements-to-be-a-bsge-accredited-centre/

I think his waiting list is particularly long, so it allowed me to be seen slightly earlier. Thank you, I do have those links already and the websites are helpful. Looking through again, doesn't seem like my BSGE centre was living up to everything it should be.

But yes agreed, I'll concentrate on recovering first, then figure out how to take this forward. First step is definitely going to be to politely insist that I have a follow up with my surgeon.

Thank you both for your kind and informative replies 🙂.

@beezlebubnicky sounds like you have had a terrible experience. I cannot believe they debriefed you in the recovery room and you will now only see a nurse in the clinic without any follow up appointment with the actual surgeon. I would contact PALS and politely insist on seeing the surgeon. I would want to see any photos they took too.

Can I just ask about your timeline? When did you start taking the mini pill? Is the Minera for contraception purposes or for both that and endo treatment as that is what they believed before your lap? My endo is in my pouch of Douglas as well as other areas but I was warned before my lap that due to all the treatment I had had that active endo deposits may not be visible but the scarring and/or adhesions possibly would be. My endo is drug resistant so there were active deposits.

Humm that's not good.

I've had excision surgery and similar symptoms to you.

I'd be asking for photos, videos and proof that they didn't find anything, it's seems really odd to me how you've been dismissed.

Did you agree to the coil being fitted?

Hi @LegLegLeg that's really interesting that as you had treatment that active endo deposits could not have been visible, I wonder if that's what happened to me. When you say treatment, are you taking about hormonal methods or previous excision surgeries?

And in my case, there's scarring in that area, so it does indicate it's been present at some point and bring dismissed feels weird. I was in a research study and everything and after this diagnostic procedure, I've just been dropped by the surgeon and forgotten.

I'd been on the mini pill for 4 months when I came off it 2.5 weeks before the operation as they said they wanted me to have a bleed first. Maybe I should have come off it sooner to ensure there was some active endo for them to find, but I wasn't advised to? I'm not sure if that's even how it works...

I will definitely ask for photos and to see the surgeon. The Mirena is for contraception purposes, but primarily it's to treat all these symptoms I've been having, the supposed 'not-endo.'

Thanks @pleaseletmesleeptonight I did agree to the coil being fitted.

@beezlebubnicky I was on the combined pill for a decade to treat my "painful periods" I had to come off it due to migraines. Returned to GP and got a female doctor who suggested endo. Was referred to consultant though NHS. Did Duphaston which didn't do what they thought it would. Then chemical menopause with Synarel and HRT. Reduced but didn't remove all pain. Saw same consultant again but only because we switched to private medical insurance. Previous to this had been having check ins with junior staff members.

Consultant recommended laser lap and dye at that point to diagnose and treat. It was 1 week from appointment to op. Revealed lots of scar tissue and active endo deposits. I felt validated. Mine is described as aggressive. 3 months after lap it was returning rapidly. I was offered Danazol and I refused due to possible side effects I had already gained a significant amount of weight from the Duphaston, didn't fancy facial hair or acne and I had had been through enough.

I don't know how old you are or whether you have children or want children but I would be asking questions from the consultant as to the health of your reproductive organs.

I had a lap which found active endometriosis which they tried to remove (was widely spread so they couldn’t remove much of it safely) and I had no follow up at all, just got prescribed a pill and that was it. So in my experience even if they find endo there’s no follow up anyway, unfortunately.

Thanks for info - that sounds really difficult. I'm 33 and yes I do want kids. When I was in recovery, the registrar did say that all my reproductive organs looked very healthy, so I guess that's positive. But then I've still got these awful symptoms

@beezlebubnicky that is good news about it all looking healthy. I would be concerned about the scar tissue probably being endo. I don't know what your family planning timeline is but you might want to think about it possibly being brought forward. You can have the teeniest amount of endo and be in excruciating pain and riddled with it and feel nothing. Just because they cannot see it does not mean it isn't there. Did they biopsy any of that scar tissue to see the possible cause?

At the end of my Danazol refusal I was told if I wanted children to start now as I was the right side of 30 for more successful IVF and in a year I would be eligible for the IVF. Obviously for me I was out of medical and surgical options at that point. So we did start ttc and I was pregnant in a month. Everyone was shocked, Ds was a miracle baby. However I had been married for a few years at that point, owned a house etc and we were just enjoying our life as a couple with a no rush attitude until I was told I had endo.

That's a really good point about it not depending on how much there is, it's more about where it is - I've definitely read that before. I'll do my best on the family planning time line, but I only met someone suitable to have a baby with last year and we're trying not to rush it too much 😅 and want to be more settled and committed before we try. Probably not for another couple of years which is know isn't ideal age wise, but it's just the way things worked out for me. I'm trying to be zen about it. If I can't have kids, I can't have them.

Re: the biopsy, that's another question I'd like to ask the surgeon. Really happy that your family plans worked out for you though when you've had so many difficulties.

I think my main worry is that whether active endo is present under that scar tissue, and if I will continue to get more. I know there is nothing cure for it really. At the minute I'm in limbo with no diagnosis whatsoever.

The lap has honestly knocked me for six a bit, I'm 3 days out and still feel absolutely crap and am on loads of painkillers. So I will think about next steps more in trying to get a follow up with the surgeon soon. You lot are so knowledgeable on here, it's been brilliant. Thanks again x

I have a lap a few years ago, no active endo was found but my Ovaries were fused together and I had extensive adhesions. I was sent for an mri which then showed I have stage 4 deep infiltrating endometriosis. I would try and push for an mri.

Wow @Blizy that's insane. I don't have any adhesions or any organs stuck together, but I know an MRI is sometimes a next step so I'll mention that, thanks.

Blizy your mention of an MRI gives me a wry laugh. I was on holiday once with DH during my worst endo phase and tbh it was a blighted holiday (beautiful hotel in the Caribbean, should have been wonderful). I was in such pain I actually asked at the hotel for recommendations for a local doctor, slightly in desperation as by then I’d seen my GP at home plenty of times and been dismissed repeatedly. But I just didn’t know what to do.

The doctor had a tiny office in the nearest very small town and wasn’t a specialist in any way but he knew all about endometriosis, he was so much more sympathetic than many of the GPs I’d seen, and he told me I should ask for an MRI when I saw my doctor at home.

I did ask about it when I finally got to see a gynae, and I was basically scoffed at. I never did get an MRI. I thought it said a lot about attitudes to endometriosis that a small-town doctor on a Caribbean island seemed to be more clued up than a UK specialist.

@beezlebubnicky I’m glad you feel you’re getting some information from this thread - I hope it helps you make some headway.

That really does tell you a lot about the attitude towards women's health in this country, doesn't it @Pilcrow. Most GPs, even the ones who have done the RCOG qualification, seem to know sweet FA about it.

Four years ago, at the age of 44, My dsis had suspected ovarian cancer. When they operated to remove the ovary they discovered it was actually endometriosis and she had it everywhere. She ended up in a 5 hour op. When she came round they told her the good news, discharged her the next day and that was that, no follow up, no info on endo, zilch!
My dsis is the type to bury her head in the sand over her health but she has been experiencing more and more pain recently and I kept pushing her to get it checked. She did. Had an ultrasound scan, they told her they couldn’t see anything and sent her on her way. I was lead to believe us can not see endo but she won’t pursue anything though.
Just goes to show how uninterested the NHS can be regarding endo(and womens health in general).
I suspect I may have always had endo, I’ve been back and forth with gynae for years, no gynaecologist has ever suggested it though. An ultra sound last year found fluid in the POD but a referral to the gynaecologist came back saying all ok and I don’t need to be seen.
I despair sometimes, it’s like going round in circles.
Could you ask for a follow up to discuss everything?