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Endometriosis UK
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Post lap

I had my lap yesterday and got the worst news ever they couldn't find anything I was absolutely devastated still am worst day of my life and now they don't know what's wrong with me and I only option I have now it's to get those jags that stop periods. I'm just going to demand a hysterectomy as I feel it's my only option I can't keep going with life in this pain I actually told my gynae he shouldn't have bothered waking me up after the op 😭

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Hey, I’m sorry nothing was found but they won’t do an hysterectomy unless it’s absolutely necessary like if your ovaries are damaged or something and it may not solve your pain problems. I know you’ll be feeling angry and upset rn.

Was the surgeon an endo specialist and did he check everywhere including bowel, bladder etc xx

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I'm not sure if he was an endo specialist, he never really spoke to me after as I was so upset and angry he said I'd have a follow up appointment but I don't have any options left and I don't know what to do

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Hi Emsky,

I have had this last week too. Tbh I thought I would feel how you are feeling and I think because I’ve got to the point of realising that my pain is real, I know it is and I am doing everything I can to manage it, I’ve come to peace that I do not have endometriosis. I don’t know your personal situation but I try to think of the good things about it such as being able to have children without struggling, not having to have a lap every 2 years etc etc.

It is horrible not having answers, but we can’t always put a name on everything.

I’m sorry you feel this way, I hope you feel better about it soon x

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At least if I had it I could have it removed and I would have known what's wrong with me. Nobody knows now and I feel like I'm in all this pain post surgery for nothing 😭 x

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You aren't in post pain surgery for nothing :) .

You got confirmation that you don't have endometriosis, that is something. I know it doesn't feel like that right now but it's a good thing. There must be another reason for your symptoms and pain, which sucks because you're going to have to fight harder for an answer.

When you have your follow up ask what else could be causing your pain, you might have to go back to your GP to be referred to another department.

I'm sorry you are having to go through all this. Hope you feel better soon.

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At least if I had it then I would have gotten rid of it today whereas I'm now still in pain and nobody knows what's wrong 😭 I honestly dunno what to do been crying about it since I dunno how to go on

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I totally agree with Char998. I know it’s not nice not knowing what your pain is caused by but you’re so lucky not having endo. I had surgery only 6 month ago and now having to go through the menopause due to all symptoms returning. Hope you are feeling better soon x

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I don't feel lucky at all I wanted help and answers and now I feel like I have nothing but pain for the next 30 odd years or so :( I dunno what to do now

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You will just have to keep trying hormone treatments until you find one that works x

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Tbh Emsky, you wouldn’t have just got rid of it on that day. Many women find that after a lap they don’t see improvement or it just comes back anyway, there isn’t any ‘getting rid’ of endo.

Best option is to go back to the gp and explore any non gynaecological possibilities for the pain, eg bowel or bladder possibilities.

I’ve been reading about how ibs changes with your cycle and how much it mimics period pain, which is crazy but it’s definitely an avenue I’m going to explore x

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I have ibs I only get the pain during my period and my IBS pain is completely different pain :(

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Hi

I feel i should write something as i dont want u to do something so drastic!

I just tell u a quick bit my story.

Im 44,horrendously bad periods since 13,every month id b doubled up in sick bay. Nothing was known about endo or even really discussed about periods then. I was put on pill at 17 still horrific every month.fainting, vomiting, doubled up in pain, clots size of golf balls.

I just put up with it...

On my 37th birthday i was told i had to come off pill ( just incase u wander nope i do not have children !through choice) so had never come off pill, they told me I had to have break as id been on it 20 years!

I burst into tears as i was just dreading it...

They had no idea i had suffered for so long as i never went to dr apart from general checks and smear.

They said “ got to b endo”!!

I had lap within 5 weeks!

They found nothing but i had very thick clotting blood so was put on trans acid which has helped me abit only with clotting , the pain i still bad.

So i paid private to see a gyane who did internal

And said i was so pelvicly tight he had never seen someone so bad ....

So i was sent to a womens physio therapist..... i had this for weeks where she found a tiny enterocele which was easily sorted and i was so tight it was effecting my whole groin , hip and back it was so inflammed. After months of physio internal external i now can have sex With no pain! Have a period and still get up and go to work and go out and do whatever whereas i used to cry on bathroom floor for 3days!

I also found out that gluten inflames the bowel colon and bladder so decided to give that up and that made a massive difference in my body. MASSIVE!!!!

I am now 44 , i got to a digestive osteo( most deal with all parts of body)

And they sort out my pelvis hip groin womb and stomach and digestive system and i am back to full time work.

Loving life.

All these years ive suffered!

So please just dont think a hysterectomy is ur only answer!

There are lots of things and treatment out there that people Do not even know exist!!

Also i know it dont help u but u should b happy u dont have it as it a awful desease. Whatever u got mayb able to treated!

My ibs give endo symptoms to and effects period hence why i gone gluten free so have u thought it could b ibs also

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Hiya Emsky,

I understand that you don't feel lucky to be told you don't have endometriosis, I was in the exact same boat in March, when i found out they didnt find anything - I was devastated and couldnt stop crying for ages! I just wanted answers and endometriosis fit the symptoms perfectly and the private gynae I originally saw even told me he was over 90% sure it had to be that.

I recently had my results follow up with a different gynaecologist who read through my results and was very sympathetic and understanding about my anxieties and lack of answer. She said that since I'm still in daily pain and that I've had to take my pill through for the past 3 months (gp advised due to still have excrutiating and heavy periods), she believes I could have deep infiltrating endo behind my uterus or in my bowel - because I have ibs pains regularly but all ibs treatments haven't worked either - my there were many places that my operation notes stated were not checked. I'm now waiting for a pain management clinic appointment to investigate other possible reasons for my daily pain just in case it isnt endo as they don't want to have to cut me open again only to find nothing or to cause a different kind of scarring.

I've requested a mri and a vaginal ultrasound but I have to wait for pain management to decide if i should have one.

I completely understand how difficult it is to be in pain without answers - I have previously been told that they have no idea whats wrong with me as i should be fine according to blood work etc.

I really want children in the future so I'm hoping I can find answers soon but I have contemplated a hysterectomy in the past due to my awful pain but without a medical reason I was told by a private gynae that I would have to pay a lot of money for likely no result after it being removed.

Message me if you want to talk further.

I hope you get answers and find a way of coping soon,

We're all here for you xx

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I honestly don't know how to cope I honestly wish I hadnt made it through the surgery and I would have gone happy at least the thought of being in pain again is tearing me apart my gynae has told me to get the coil but I've not heard anything good from anyone about it so it's putting me off or the jags that basically put you in menopause but I'd rather just go through actual menopause if that's the case. I don't really want children but freezing eggs and someone else going through the labour sounds like something I'd prefer if I'm honest. I'm thinking of just going against gynae orders and just never stop taking my pill for the time being until I get an answer I feel like they won't have one for me :( x

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