No endo found :(

[Marley24]

Hi everyone, had my lap yesterday and they found nothing. Everything normal and moving freely. I am gutted as I've been suffering with excruciating periods for 17 years now. My symptoms have got worse in the last year and I have some level of period pain most days, especially 10 days before my period. Plus the fatigue and the pregnant looking belly (it's like my whole pelvis swells up). My surgeon was not a specialist and he said there was no scar tissue or adhesions and no biopsies were taken. Though on my discharge notes it says intra abdominal adhesions. Does anyone know what this means? I'm going to get a second opinion with a endo specialist as Ive got to find what's causing all of this! Thanks ladies

[weekari]

I'm so sorry to hear that you've not got any answers. Obviously no one wants to have endo but we all want to know why we're in pain & having awful symptoms, ultimately in the hope that we can do something that will help.

I felt the same way after my laporoscopy 2 years ago. I woke up to be told happily that no endo was found. I was just left feeling 'well what the hell is wrong with me then?!'. I felt lost. Ultimately I was told that it was stress related, chronic fatigue syndrome and other unhelpful things. I stopped going to the Dr and found my ways to cope. After a long time with hip & back pain i went to a physio who said I needed to see a dr, I eventually saw an orthopaedic consultant who suspected arthritis & sent me for an mri, no arthritis but stage 4 endo was found everywhere. My ovaries couldn't be seen.

Knowing what I know now, I don't know what I would've done differently back then after my laporoscopy. They had their negative result and so that was the end of the road for the dr. I think the medics see things very black & white and are often extremely (over) confident in their findings... If they don't see it, it doesn't exist, end of. I'm not sure I could've changed that. I've ended up finding out through another avenue, which has been a HUGE shock for me. But, this may seem odd, in a way, there's a part of me that's glad I didn't get diagnosed 2 years ago because in those 2 years, the journey I've been on & the lessons I've learned have been so valuable. I just accept and trust that this was my journey, this was the way that's right for me, even if it felt really hard at times. That's not to say that I'm not going to now try and get the right treatment and I'm going to demand now that I be sent to a specialist service!

I guess my point is, to not lose hope and just try to have some trust in the bigger picture. You know something isn't right with your health. Maybe medically they have nothing to offer you just now but that doesn't mean give up. I was drawn to alternative treatments like Chinese medicine, acupuncture, reiki, yoga, meditation... You name it. And it's all helped. Now I'm armed with all these different tools that I wouldn't have likely found had I got my diagnosis 2 years ago.

BTW I didn't feel like this yesterday. I was furious yesterday but today I've had a bit of perspective and realised I just need to look forward.

[Marley24 in reply to weekari]

Hiya thankyou so much for your long reply. I know from research that endo can be notorious for being difficult to find! Especially if it's just a general gyny having a look. I've dealt with my issues since I was 9 (26 now) and discovered keeping as fit as possible, heat and suitable painkillers helps alot! I do my best to run two busy businesses by myself too which keeps my mind off it but I have let clients and customers down when I'm late getting their horse rugs back or I have to cancel bookings. I've fought with drs for most of life and gave up but this time I really want to get to the bottom of it! I think we don't realise how strong we are, especially when battling this horrible disease! I've found a local endo specialist so when I'm feeling better I might book to see him to discuss my op notes and photos and see what he says especially as I don't have a follow up from my lap x

[lisalovescake in reply to Marley24]

Could you request an MRI? I've just had one and seems to be a very good option to investigate now for gynae issues. Also know another lady who has a very good doctor who got her an MRI too recently xx

[Marley24 in reply to lisalovescake]

That's what I'm thinking too as it can show adenomyosis? I'm in quite a bit of pain today so has fueled me even more to continue investigating! Can abdominal adhesions cause all these issues? I'm just so confused why I was told nothing found but written in my discharge letter is 'uterus moves freely with intra abdominal adhesions' does anyone know what this means?

[lisalovescake]

Contacting the secretary of your consultant is a good idea. I've had to do it a few times when I've needed answers from my doctor.

[Natalie221]

I had mri the other month and they didn’t find anything but I’m getting given a second lap that I’m waiting for now I had endo in pod in 2014 but only a small amount so I don’t no if mri only picks up deep endo ? Not sure xxx

[Lulububs]

Hey

I had same thing, ive suffered since i was 13 and now 44

It took me till i was 42 to actually say something to

Dr after fainting with pain during period.

I had lap and nothing!

I was given tranexmic

Acid and just keep on top of it by taking naproxen two days before i start and the tansexamic acid as soon as i see blood and painkillers.

I also use heat if i cant have a hottie il have a heat pad u can stick in knickers ( at work).

Also i keep really healthy, exercise, no alcohol, light meals, no gluten and no dairy. Which seems To help me alot!!!!

Also i have found ( a pharmacist told

Me this one)

BUSCOPAN!!! Stops bloating and cramps and it does work.

I have ibs so i had them

Anyway but never thought about them For periods . Also i take lactulose solution as i get really comstipated whilst on period which i think adds to my pain.

Sometimes us women just suffer with periods there no answer to it some just suffer more then some.

Im not reading to much into it...

Im hoping they found nothing coz there is nothing!!!

I did find as soon as i gave up bread and gluten my symptoms halved anyway

[Minchoo]

I was like that too, but still no endo. However I have a frozen pelvis so not sure if it’s all in there. Waiting for a BGSE Center. Adhesions sound like adenomyosis. Adhesions can also be due to an infection. Best to get checked with a Endo specialist. Just to ensure you rule out early endo. I hope you get a diagnosis soon.