Lap came back normal, what now? - Endometriosis UK

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Lap came back normal, what now?

Bea_L profile image

Hi all, I'm wondering if anyone can shed some light on this. I've had problems with my period for years and years now (I'm 26) and have tried various treatments. The pill/mini pill gave me terrible side effects, the mirena coil didn't work, various painkillers including Diclofenac, Mefenamic acid, Naproxen, co-codamol etc don't even seem to touch the sides. My pain starts around 3 days before my period and lasts around 4 days into it. I have intense pain in my abdomen, back, and down my legs, to the point where it's becoming debilitating. Penetration is extremely painful and I almost screamed during my smear test (which came back normal) and had to have the smallest speculum as a result. I had a diagnostic laparoscopy in February and the doctor said it came back normal except some very tiny cysts (I had a problem a few years back with one cyst which then shrank on its own). This was a huge surprise as I meet almost every symptom of endo. Ultrasounds all come back with no glaring reason for this pain. I'm now being booked in for a transvaginal ultrasound and I'm hoping this can give me more answers, but are there any other conditions I can research? I'm at my wits end as I am spending yet another day stuck in bed with a heat pad on.

Thanks so much for reading this, it's very much appreciated.

22 Replies

Keep pestering, my lap came back as normal but I have since been diagnosed with a stomach ulcer causing inflammation in my pancreas and gallbladder. My GP and and a couple of A&E docs were convinced it was endo of the diaphragm. I've also been referred back to colo-rectal as my gynae doc (well, his registrar) thought she saw something in the bowel) I have had to be insistent with the hospital and go through quite a few admissions to get to this point. If you have pain it is not normal so keep on going and get tough with them. Good lucK, hopefully you'll get some answers soon!

Bea_L profile image
Bea_L in reply to

Thanks so much for replying! I will keep pushing. Hope you get sorted soon! :-)

Other things to consider may be adenomyosis and a dysfunctional pelvic floor. You will be able to pay to see a specialists women’s physio who has experience treating women with endo who could probably really point you in the right direction xxx

Bea_L profile image
Bea_L in reply to Catness

Thanks for your reply :) I’m sadly not in a position to pay to see anyone and I’m relying on the NHS, but maybe that’s an option for the future :)

marymary101 profile image
marymary101 in reply to Bea_L

I've had excellent NHS pelvic physio. Ask for the referral via your gyne/GP.

Bea_L profile image
Bea_L in reply to marymary101

Oh this is good to hear, thank you! I’ll ask :)

marymary101 profile image
marymary101 in reply to Bea_L

You're welcome. Hope you feel better soon.

Fyi: My first lap (at 18) was negative. Two children later (at 36) I was confirmed as riddled with endo and have had 4 surgeries to try and get it under control!!

Sounds like endometriosis. A vaginal ultrasound will show something only if an experienced endo OB/GYN performs it, which I don't think it's your case. Not even a CT scan with contrast can show all endometriosis. I suggest you immediately get referred to a BSGE centre or even better go to a Nancy Nook excision surgeon and discuss surgery. The smear test doesn't show anything other than cervical cancer cells. If you have endometriosis or have had an infection, that wouldn't have shown it. Have you ever had vaginal swab done? Are you in pain during ovulation too? is your period regular? Is it heavy and full of clots? I need more info to suggest other possible problems.

Bea_L profile image
Bea_L in reply to StefaniaJW

Thanks, I’ll have to have a look and see if there’s a UK equivalent - I’m relying on the NHS, which is already stretched beyond measure, so it’s a case of just seeing whoever is available at the time, sadly. I had the Mirena coil fitted in February and had it out a week and a half ago, since then my periods have been mainly clots and thick/brown, however in the past week since my body has adjusted back to not having the coil it’s back to just heavy bleeding, no clots, which is what it usually is. I had a vaginal swab done a couple of weeks ago to rule out pelvic inflammatory but it came back negative. My period is usually fairly regular - it can be a week or two late or early, but nothing too drastic.

StefaniaJW profile image
StefaniaJW in reply to Bea_L

It sounds like endo. Some Nancy Nook experienced endo surgeons work within the NHS too but I don't know about BSGE centres, you should check it out

Chronic Pelvic inflammatory disease could be an other option.

Bea_L profile image
Bea_L in reply to Sileen

Hi, I’ve been tested for this and it came back normal :(

I've had endo missed at laparoscopy so I would advise on 2nd opinion from those already advised above. I also have adenomyosis which was seen on MRI. So try to get one of those. It's similar but the rogue tissue is trapped inside womb muscle so they can't see during lap although womb can look spongy. Don't give up! xxx

Bea_L profile image
Bea_L in reply to Janeyd27

Thanks, I’ve been researching adenomyosis and it does sound very plausible. I’ll push for an MRI :) thanks so much for your reply!

I had a negative laparoscopy in my 20's but was diagnosed with endometriosis last year in my late 30's. I ended up paying to see a private specialist. I'd moved outside of the UK so couldn't use the nhs anymore. He believes it was missed on my first laparoscopy. It starts off microscopic so unless you have an experienced surgeon they can miss it. I don't believe mine looked far enough originally as I have deep endometriosis on my uterosacral ligament but nothing on my womb or ovaries. They only picked up a simple cyst originally and everything subsequently was blamed on cysts.

Are you able to request copies of the photos taken during surgery or a list of areas checked? I would see about getting a second opinion if you can. I feel your pain because it took me 18 years to get diagnosed. I believe than an MRI might be the way to go as sometimes they show deep endometriosis. Don't give up fighting for an answer though!

Bea_L profile image
Bea_L in reply to Thecraftyadder

I’ll definitely ask to have a copy of the pictures as I’m really interested to see them anyway. Thanks for the tip!

Ditto 18 years, ditto deep infiltrating..... Mine was diagnosed via an MRI investigating back pain!!

That's interesting. I had to self fund (with family help) another lap for my diagnosis but the specialist seemed pretty sure. I'd got restricted leg movement on one side by that time from the scarring but it's come back again since the excision surgery. Its interesting to know that a MRI showed yours. It shouldn't be this hard for us should it!!

It really shouldn't!!!

The back investigations were because I'd lost feeling in my right leg which was swollen all the time and all the other tests had come back negative (DVT, etc). Endometriomas were visible on the scans, pelvic adhesions had obstructed the nerves and lymphatic drainage in my leg!!! I'd been going to the GP for years but that negative lap steered them away from the problem.

I'm so sorry to hear your excision relief was only temporary. I'm in tomorrow for excision, hysterectomy and bowel resection and (naively) hoping it will be sorted.......

Don't panic- i meant my leg movement has come back again since the surgery not the endometriosis lol. Sorry I just realised how it reads above. I've had leg swelling issues to. I'm now seeing a private physio who does hands on massage to help with my back and leg issues. All the best with your surgery! :)

Hi hun, have you had a previous diagnosis of endo. So I had a diagnosis lap in 2008 and 2010 one with excision and one with diathermy. Then had lots of things inbetween on zoladex loads of times, danazol, pain injections etc.

Then last 10 months I've been on triptorelin and it's really helped. I went to endo centre my local team referred me and they said there was no active endo! I was really confused but then been on the injections then after two weeks my pain was so bad went back and turned out I had a small bowel obstruction secondary to adhesions. So my advice is you know your body best so fight for answers. I will be. X

Hey, this sounds hard to go through. I have tried loads of different tablets too and trying to figure out what works best for me. At the moment I’m on Amitriptyline and had really helped to reduce the pain. I take one at night before bed. The side affects for me are feeling groggy in the morning and dry mouth. I would recommend to ask the GP about it. It’s different to a pain killer my doctor said it changes the way the brain receives pain. Hope this helps x

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