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Endometriosis UK
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Negative laparoscopy, what now?

Hi all,

I'm 20 years of age and to cut a long story short I have suffered with (what I thought were) symptoms of endometriosis for 4 years.

Originally started as bowel problems (upset stomach, abdominal pain, bowel urgency) but in the 6 months later problems wtih random bleeding occured. The doctors changed my pill but still no difference. At one point I bled a small amount every day for around 3 months. Put on the injection, stopped the bleeding but pelvic, back, abdominal and hip pain/bowel issues/tiredness and fatigue and pain during/after sex remain.

Blood tests/IBS medication/antibiotics for consistent water infections/stool samples/urine samples/ultrasounds/colonoscopy/endoscopy/bladder medication showed/cured nothing.

After a long, infuriating battle (and some private hospital appointments) I FINALLY got a lap in January 2018. It showed nothing other than a swollen bowel.

Without sounding mental or ungrateful.. I am SO dissappointed. Obviously endo is not something that I have ever wanted but I just have no idea what else my problem could be. I am constantly tired, often dizzy and nauseous, suffer from pelvic/back/abdomimal and hip pain daily. Pain during sex, constant bloating, headaches, sometimes pain when urinating, random shooting pains in my ribs and pain when going to the toilet. Alls I have been sent away with is a FODMAP diet which is making no difference.

Any ideas would be greatly appreciated🤕

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The NICE guideline requires you must only see a gynaecologist with expertise in diagnosing and treating endo, who has specialist training and skills in lap surgery for endo. The lap must involve a systematic inspection of the pelvis which is detailed further in the ESHRE guideline - so it should report on all the areas checked whether results are positive or negative. So what does the discharge note say about the pouch of Douglas and uterosacral ligaments and pararectal spaces? These are the most common locations for endo and also those which give the type of symptoms you describe, but often the most missed at a lap. A thorough rectovaginal exam should have been carried out while you were under (fingers up bum and vagina) to feel for any deep nodules which would give these symptoms. Does it say this was done and that there were no palpable nodules?

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Literally the only thing that my discharge letter says is "GP to please consider starting antispasmodic for possible IBS. No follow up required. No sign of endometriosis on laparoscopy. Significant bowel distention suggestive of functional bowel issues causing pain. No complications. Mirena coil inserted."

There is no detailed description of any of those areas and no mention of a rectovaginal exam!! Thank you so much for this reply I had no idea about any of this.. plus I am even more angry that on reading this letter again I have noticed that they couldn't even spell laparoscopy right!!!

I am going back to the hospital on Thursday to see the bowel specialist that I was referred to after discharge, to tell him that the low FODMAP diet has made no difference and to probably be sent away with antidepressants to "relax my bowel".

Would you recommend that I ask for an MRI scan regarding my back and hips as this is one area that noone has properly examined? I will also definitely be raising these guidelines now.. thank you!!

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I would say the same as Lindle :)

Regarding guidelines though; have a look at the NICE website, NICE pathways, there are interactive flow charts for Endometriosis, have a look and see what treatment / diagnosis etc they should be following. Then try to encourage your specialist / consultant to put you in for those treatments

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Thank you! I have had a look and will definitely be pushing for the option of an MRI scan as this is recommended before a laparoscopy on the NICE guidelines and has never been mentioned to me. I have also seen a few stories on here where women have been told the lap was clear and then later had endo discovered through an MRI.

Thank you

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Ironically the symptoms that are most likely missed by specialists in gynaecology departments (or put down to IBS) are those suggestive of deep disease. IBS is a symptom.

What you need to do is convince your GP that you have symptoms of deep endo, in which case you should be referred to a specialist centre for the MRI. It's important that only an experienced specialist radiographer does it. Referral to a centre is direct through NHS England and not through the CCG.

The NICE guideline does fall down in not identifying the symptoms of deep disease, but the ESHRE guide is much more detailed and points out the high percentage of women who have a prior diagnosis of IBS.

NICE:

nice.org.uk/guidance/ng73/r...

The flow charts are in the guide but only say 'Refer women to a specialist endometriosis service (endometriosis centre) if they

have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter'. It would have been useful to identify the symptoms.

ESHRE:

eshre.eu/Guidelines-and-Leg...

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just remember the only way that a formal diagnosis for endo can be made is through a lap, sometimes they say endo can be seen more when you're on your period....

also a lot more hospitals aren't doing MRIs anymore as it costs funding wise; the NHS is cutting back :(

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Hi! This sounds exactly the same as me, except they’ve always assumed mine is a Gastro issue so I was diagnosed with coeliacs a few years ago, and going gluten free helped a bit but not massive amounts and now I still suffer with all the symptoms you’ve described, on a daily basis. Now looking into endo but it’s been at my suggestion and I’m having to keep pushing for it (even though I have all the symptoms!). I went for an ultrasound today and she refused to do an internal one despite me asking her twice.

I know exactly how you feel- obviously you don’t want an illness but at the same time, you feel horrendous all the time and if it’s properly diagnosed at least then you know what it is and you can hopefully get some treatment for it. I’m also hoping mine is endo because I’ve been having tests for the last 23 years (I’m only 30!).

I’ve also been fobbed off with the ibs thing so many times, and am currently retrying fodmap (just to show willing!) but it’s so frustrating. The last Gastro I saw openly admitted that ibs is used as a fob off if they don’t know what’s wrong! 🤦🏼‍♀️

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I am so sorry that you are you in this position as well it is just so unfair!!

Exactly, I could understand if it were solely my bowel issues causing a problem but I am still yet to receive an explanation as to why/how all of these different painful, random and complicated symptoms in so many areas can be solely linked to which sugars I am eating!!

Do keep pushing, I had to do the same for so long and was even told once by a gynae that I "didn't look unwell" so that was that. I know it is not an option for some people and it is definitely not an option that we should have to take but going privately even just for one consultation massively sped up my route to laparoscopy after a long long time of battling with consultants on the NHS so I would definitely say that it was worth it if you can.

Fingers crossed you get some answers! I am hoping to get closer to mine on Thursday by begging for an MRI scan

Thanks for replying!

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