No endo found so what the hell is causing... - Endometriosis UK

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No endo found so what the hell is causing my pain?

court28
court28

Since the age of 13 I've had the worst periods imaginable. After having children my period pain has gotten better but I know I have abdominal pain and nausea vomiting. I've been told by a few different gynos that it is most likely endo. I had my first laparoscopy today at age 31 and no endo was found. I have every sign and symptom of endometriosis. Has anyone else had this happen? I've waited years for answers and feel so lost.

16 Replies
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Yes this happened to me a few weeks ago and I'm currently sat here with the worst pain in my groin after finishing my period. Other ladies on here have told me that they kept pushing for answers and that on a second lap there was endo found. I feel quite lost tbh and don't know where to go from here. I feel like my gp will just think it's all in my head 😐

Often there is endo but it is not seen, does the gynae know what he is looking for? Sometimes it is microscopic, remember the amount of endo does not relate to the amount of pain. Have you tried cutting wheat and gluten out of your diet - research has shown that 80% of sufferes get benefit from avoiding wheat and gluten. Give it a try for a couple of months, it must be better to try something on your own while you are waiting for another appointment. If you are stuck look at endometriosis.co.uk/

HiddenThis reply has been deleted
Poorni1234
Poorni1234
in reply to Hidden

Not sure what evidence ccfd9 was referring to but i remember reading the same thing in a few books (i think the one by dian shepherd mills and the recipe book by carolyn levett). I dont remember if those statements were based on any research or simply anecdotes. In anyncase, I thought it was worth a try so i tried it. It didn't help me with pain at At all. But i am giving it a few more months because i want to lose weight and atleast this is forcing me to include more vegetables and fruits in my diet.

ccfd9
ccfd9
in reply to Hidden

Hi hunny, was you seen in a bsge specialist centre or general gyne???

court28
court28
in reply to Tboag

General gyno

Tboag
Tboag
in reply to court28

General gyne often miss endo in certain situations, so if you carry on getting symtons that point to endo , I would request a second opinion, and find a bsge specialist centre near you and get refferal from your gp,

Good luck

Hi have a look at my previous posts, I am in exactly the same boat as you are. Message any time x

Yep same happened to me 2 weeks ago wasn't found when I was told it could be that too , they found some like veins in my pelvic which where swollen but told could do nothing about them as too dangerous , also my bowel was abit twisted and stuck I'm a bit confused with it all and no proper explanation , I'm no better knowing why all this pain in my pelvic , keep pushing don't give in X

Unfortunately this seems to happen so often. I had my first lap about 6 years ago and no endo was found and I felt exactly the same as you... I was pretty sure that all the symptoms of endo fit and that's what it was an after getting told it wasn't endo (and probably IBS... grrr!) I was completely lost. I actually end up giving up for a while thinking it was all in my head and just period pain and that all women probably felt like this. However, the pain was getting progressively worse and so I had to go back again... I was referred for another lap which I had on Saturday and endo was finally found! Don't give up - you know your body better than anyone so please keep trying to get some answers and maybe try seeing a different specialist (I think that's what helped me!) x

Oh yes Court28

I was told for years it was in my head.

And why do you get pain when I don't or others don't

Get on with your life some just accept the lot as a woman and you have pain

And my personal favorites

" your probably hurting when you pee because your not sitting on the toilet right "

Mom in law

And when the next baby wasn't happening

" your probably not getting pregnant to keep my son safe from being called to war "

"Yes dear mother in law "

You must be right . I'm in tremendous pain every month .

And ya what if I got pg and it was a boy "

" I'm sure you are right and I need to make the sacrifice for the youngest of your four kids"

Those things and stings and damn stupid ass remarks are always buried deep in my brain

I hate they said those things

I hate even more the fact that I still feel the sting of the pain

Mostly I don't think about it these days

It was years and years ago

But famiky friends doctors and neighbors , just don't do and say the right things.

They can cut with knives and leave us with scars that are worse than endo .

They don't mean to .

They are trying to help

They have just not stood in your shoes and do not have enough empathy to get anyone else but their own stuff

So no a dr does not have the right to look at you and say things that he can not see

There is no easy blood test so they would rather keep their pride in their DX than care about you .

So when you go back

Do what I wish I had done

Ask him where he got his X-ray vision?

And ask him how could he say that when every woman is different in symptoms and severity.

Because they can not be sure

And need to be told they can not know that

Don't worry about hurting your doctors feelings.

Their feelings are not in the equation

And who cares about their feelings

Put on their big boy pants and face it if they wrong or don't know .

We spend way to much time worrying about how our doctors will feel if we hurt their egos.

If their egos are that fragile then it's time to leave

It's not your issue

I don't know if you have endo or not

But the doctors don't either

And just because you bring it up first gives them no right to puff out their chests and declare

HOW DARE YOU

No dr

How dare you ????

"

Same thing happened to me. Had a lap and the surgeon found no traces of endo. Six months later I had a CT scan and there was a 6 x 4 x 4cm endometrioma on my right ovary.

There is a number of possibilities of what might have happened in your case including:

1 the surgeon missed it

2 it went away temporarily (possibly in response to hormone treatment?)

3 you have adenomyosis or other condition

Best of luck. xx

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