Lap says no endo - gutted & confused!

[JellyKat]

Hi ladies, apologies for the long post, but I really need some insight here.

As a young girl, my periods were always hellishly painful, but hey - that's what you expect, right? (!)

As I got older, they got no better (although I think having a copper coil didn't help - nearly passing out at uni on a frequent basis wasn't great), so got rid of the coil and went on the pill (microgynon) for the best part of a decade.

I saw a specialist about painful boobs, but I got that sorted by cutting out caffiene (it lowers your pain threshold) & was told how to handle it if it happens again by using GLA to help balance my hormones.

Things were fine on the pill, periods getting a bit more painful as I was getting older, but thought that was just the way things were working out for me.

so, in 2014 I had some dodgy cells on my cervix that needed removing in Nov 2014, with advice that "your next period will be more painful than normal after treatment, then return to normal", which was sort of true... the next one was hellishly painful, then the next one was ok, but the next got worse, then worse, etc... by April it was a case of taking as many painkillers as my liver could safely process (ibuprofen, cocodamol), a day or two off work here and there. I started to get painful boobs again and some mid cycle pains, but figured that was from running a couple of pill packs together (no period, no period pains).

My hubby and I decided to try for a baby, but wanted to wait until I got the 6 month all clear after the cervix treatment first.

So at the end of summer 2015, I came off the pill... started to get horrendous pains mid cycle (suspected it was because after a decade on the pill, the body will take a while to adjust to being off it), but by comparison, the periods weren't as painful as the mid cycle pain, but still pretty terrible.

So the next few months were the same, fainting from the pain at work, doubled over in agony, taking all the painkillers I could. I tracked the days of the worst pain, did ovulation tests and there is an unmistakable relationship between levels of estrogen and the peak of the pain. So obviously, got a referral to a gynae, explained it all to him. Got the ultrasound all clear, no infections or the like.

Things got so bad, I went back on the pill at the end of November just so that I could try to function a bit better, and stayed on until the lap (which was fine for the first four weeks, but then the pain was creeping back in, almost as though being off the pill had fed the beast inside me and was becoming resistant to the dulling effects of the pill).

So then, after yesterday's lap... no signs of endo either.

They found a cyst but say that's not what causing the pain... they suggested the pain is perhaps bowel related - did I get constipated or loose movements? Well, no - I know what's normal toilet wise (I'm also coeliac, so know my guts very well!).

I asked about the mid cycle pain and was told that sometimes women get mid-ovulation pain, it's called mittlesmertz (or however you spell it!). Yes, I'd heard of that, but this is hellish doubled-over in agony pain...

They said I should ask my GP for a scan of my gallbladder in case it was that...

I asked about adenomyosis but was told that was inside the uterus, not outside, so the lap wouldn't have seen it... yet there was no willingness to do an internal examination to explore that route.

I felt so disappointed, so confused.... there is such an undoubted correlation between my hormones and the pain, and yet they are so eager to dismiss it as something else.

I'm at such a loss as what to do... The last natural cycle I had was 34 days, of which only five days were pain free. I so desperately want to start a family, but how can I if I'm in agony (I want to be capable of looking after a young baby, would be irresponsible of me to try for one without getting myself better first). The pain is impacting my life so much, my husband has been very patient and understanding but it's not fair on him either. It's affecting my work too, having to rely on my colleagues to do the physical parts of it for me. It's so draining being in pain, being tired... I just wanted some proper answers yesterday or at least a way forward, but can't help but feel fobbed off.

Sorry for such a long post, I just really can't see how it isn't hormone related.

[Nicola83]

So sorry for how you are feeling, I had a lap last Thursday and was also told that no endo was found. I had pretty much pinned everything on it being endo so to be told there was nothing there was confusing, upsetting and I felt so down about it!

I have my follow up in March so I am going to explore everything with my gynae then but when he came round to talk to me after the op I asked what else it could be and he said hormones. I had the Mirena coil fitted too so I am hoping this will help, if not he wants to try me on a GnRH analog to suppress ovarian function. I must say that I didn't speak in depth with him so am looking forward to this in a few weeks along with seeing the pics he took!

My thoughts now are that if my pain continues I will speak again to my GP and ask for a referral to an endometriosis specialist. I have been told that general gynaecologists can miss endo so this is something I am bearing in mind too.

I really hope your GP can help you to find the answers and hope that your recovery from your lap goes smoothly.

Xx

[JellyKat in reply to Nicola83]

Thanks hun, I think that I'll just have to do some reasearch and make a list of questions to raise in my post-op follow up.

I must admit, when they were talking me through what they'd do just before the op, they said "if we found anything too bad, we'd leave it for the specialist to remove at a later date". I was surprised at this, as I had originally paid privately to see this guy (then referred back through the nhs route for the op itself) so I thought he WAS a specialist!!

My sister in law had three laps before they saw endo in her, she'd been in agony for years!!

Hope you get some answers too xx

[Nicola83 in reply to JellyKat]

Thank you, I totally agree re. doing research, I have been looking into it lots over the past week and was surprised at how many ladies had clear laps only to be diagnosed at a later lap. Of course I'm pleased that my insides look clear but really want to know why I have been in pain!

It is actually very confusing regarding specialists as I didn't realise there was such a variation - but if symptoms do continue I will ask for a referral to the local endometriosis specialist centre as the have a pelvic pain centre there too.

Good luck with everything xxx

[Yazza]

Ok speaking from experience and and 4-5 years researching and being treated like a moron I have found out this:

1/ lots of women are frequently told that no endo was found or very mild only to find out at a later date that actually they do have it but the 1st consultant was inexperienced in what to look for!!!! (which happened to me)

2/ when you go back to your gp still in pain you get treated like a lunatic especially if you ve been told no endo found....

So what to do about this (get the facts about missed disease by inexperienced gyni's take to your gp along with whom you would like to be referred to from the bsge centres list and ask to be referred to them.... Also just so you know they can't refuse you its NHS policy that it's your choice don't let them try and tell you otherwise been there done it!

I also had horrendous ovulation pain but only when I ovulated from my left!!!

So sorry to say it's possible that's why it's not consistent.... Also you can ovulate from the same side more than once it's not a given that it goes from left to right it can be from either!

Also I was told I had mild disease but when I went for my 2nd lap at an bsge centre they found deep disease which wasn't easy to spot!

You know your own body so trust your instincts and keep going until you get the treatment you deserve. Xx

Good luck Sharon. X

[JellyKat in reply to Yazza]

It was a BSGE centre, just not one of the specialists listed on the BSGE website that I saw... I called up for the appointment, told them it was suspected endo and they arranged one with 'someone appropriate'...

Don't know whether to just fork out for another private consultation with someone who is a specialist? 😒

[dawntildusk]

if u are still having problems u must persevere. i have experienced something similar. i ended up having an mri after my lap and it confirmed i have 3 endometriomas and likely adenomyosis and pcs. keep going back and tell them about how it is affecting you and your partner also. good luck x

[katymarie]

How frustrating!! I really feel for you! I hope the op went smoothly apart from that! I also didn't have endo which I was slightly shocked at, but apparently I have something where my period dosent come out properly and instead goes back up into my pelvis and sits there? Very strange!? But I know how you feel because there isn't really any answer to it getting better? My periods are so all over the place I have no idea how I will be able to understand when I'm ovulating! Xx

[mylady77]

I was told I almost certainly have endo by my gyne and she sent me for an MRI. No sign of endo, although she seemed to be reading a report rather than looking at any images - but there was adenomyosis, which she said was 'irrelevant'.

Now I'm off to see a bowel specialist to organise an endoscopy.

Not sure whether I should be pushing for a laparoscopy - feeling like you - actually disappointed not to have a diagnosis of endo as it would have made sense of all this pain.

Man, it's a frustrating business and surely stress doesn't help any condition!

[LadyVR]

I am so sorry you are going through such a hard time. I can so relate. I had my first lap in 2012 after years and years of fighting to be taken seriously and that came back all clear. I was fitted with the Mirena coil and sent on my way with a follow up with a bowel specialist who found nothing wrong with my bowel and released me back to my GP.

After 2 years of being on the coil and having enough of the terrible side effects (thinking there was nothing wrong) I had it taken out and wasn't under any care so diddnt have any other form of hormone control. 6 months later I was in hospital again with an internal infection because lo and behold I actually have severe endo which they somehow missed in the lap in 2012 and because of the sever internal bleeding I had managed to get an internal infection 🙈

All I'm trying to say is don't give up, maybe ask for a second opinion or keep fighting to find out what's wrong because I gave up and let them convince me it was all in my head and my body has paid the price with lasting damage. I'm 26 and feel 86 some days. It's so not worth it.

I know how hard it can be, took me 15 years to get my diagnosis but it's a fight worth fighting. You only have the 1 body.

Best of luck.

Jessica. X

[danny147741]

Hi jellycat

I have had endometriosis for 18 years , five surgery a , varying degrees found each time with mild to bad . The pain is is not dependent in how much endometriosis you have , you could gave few spots and be in agony . also it can be seen On MRI / ultrasound with colour doppler but not as much if it seen during lap even with a skilled specialised surgeon . In a Lap cam you can only see the bits on the surface or adesions .

Pain ? Please do not discount your pain , or feel silly , your pain is real bit in your head . I too had a worser time during day 1 to 17 of cycle than the period itself .

I too had upset tummy parallel to hormone changes and stomach swelling and respond worse when my oestrogen is higher . Equally I had the sore boobs , head aches and affects on mood more mid cycle . Agnus castus was recommended to regulate hormones incase one was dominant and 6 weeks in I no longer have the headaches and sore boobs . It takes three months apparently to get in your system . You can stop it once the hormones have regulated .

Please don't give up trying or feel silly , the only expert on your condition is you . If I was you I would ask for colour imaging scans .

[danny147741]

Ps sorry about the spelling , I was typing quick on my phone x

[Stephyjanem]

You need to ask for a MRI. There are places i.e behind the uterus where endo won't be seen by a lap according to research.