"1 spot" of endo, but loads of pain...

Hi, I recently had a laparoscopy in march this year. I was told they had found 1 spot of endometriosis in my ovarian fossa. My surgeon also spoke to me when I woke from the op and mentioned something about the lining of my uterus (I was very groggy and can't remember what he said). My doctors haven't been great at explaining everything to me in general!

Despite having so little endo, my symptoms and pain whilst on my period are horrendous! I also have pain when i'm not on my period (now on the pill which helping to regulate somewhat). I feel like because I have so little endo, my pain isn't really taken seriously. I actually feel unsure if I even identify as an endo sufferer because there's only this 1 spot of it...

Just wondered if there is anyone in a similar situation?

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Hi,

My surgeon is always telling me that you can have millions of cells with no symptoms and you can have one cell and have all the symptoms, it doesn't matter how many there are, it's were they are that causes the pain, so please don't worry you may only have one cell but with the right treatment you can keep it like that so that it does not develop into a move advanced stage, hope this has put your mind at ease a little x

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I agree totally with Nikki84!! It was only when I saw my BSGE dr that he explained that some women can have a small amount of endo but be in incredible pain and others like me can have very widespread endo and have next to no pain.

Your pain is your pain and only you know what that pain is like. Don't let any dr dismiss that. Drs who don't understand endo should not be treating it.

Take care x

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A consultant explained to me many years ago that the size of an endo adhesion can be irrelevant to the level of pain it causes e.g. a very small patch in an awkward position can cause lots of problems whilst a large patch in another area can go unnoticed. He likened it to having a grain of sand in your eye ie. It's tiny but it can cause a lot of discomfort and stop other organs working properly. Hope this helps a bit?

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I agree with what the others have said, above, about how : 'the amount of endo has no relationship to the pain'. However, if your GPs are not prepared to do any more for your pain, you may have to make a fuss as - sadly - lots of GPs know 'squat' about Endo!

I would insist on having a copy of all your results and the consultant's letter from the laparoscopy: this is your 'right' and it all should have been sent to you. The GP surgery may make a charge for copies, as it is a while after the event, but if you were not given them in the first place you may have an argument for a copy... but it is important to find out exactly what was reported, especially as you say the surgeon said more to you, but you were too groggy to take it in.

Once you have a copy, I would contact the advisors at 'Endo UK' (link at the top of the page) and they could explain any bits you don't understand - or post any bits/names you are not sure of, on here, and we can try to help.

Another thing: was the Lap done by a BSGE surgeon? If the Dr who did it was just a general Gynae, he may not be fully practised in: examining 'all' of the abdominal cavity, recognising 'all' of the different forms of End, or may not be that skilled in the removal of Endo - especially if it is in awkward places. Many of the letters on here are from women who have only been 'partially' treated by general gynaes, who just don't know enough about Endo. Depending on exactly what the letter/results say, you may be able to insist on a referral. But do talk to the advisors at 'Endo UK'.

I'm not a Medic, but I've got a Biology background, and over the years I have read so much on here, and on other UK Endo sites, and on US and Canadian Endo sites, as well as books on Endo, plus what has been said in my local 'Endo Group' .... to know that the majority of women with Endo are still not getting full, proper assessment and treatment, so don't give up.

Hope this helps, take care.

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Hi, thanks for the reply!

I have a copy of the results, it literally just says about the spot of endo in the left ovarian fossa.

As far as I was aware, and from what I have now researched online about the doctor who did the surgery, he is just a general Gynae doctor.

Thanks for the advice!

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hi bec . i have very few spots of endo and i;m in severe pain everyday , could it be adeno ?-so far uterus is of normal size in mri scan ,pls reply

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hi i have very few spots of endo and i;m in severe pain everyday , could it be adeno -so far uterus is of normal size in mri ,pls reply

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Hi, there was no mention of adeno, but the consultants seemed clueless/uninterested about what was causing pain - even after endo was found

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bec , you think it could be adeno?do you know someone who had just few spots and in lot of pain ?

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I don't know enough about adeno to be able to say really. It's something I'll ask about next time i'm at the docs! No I don't know anyone with it.

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I'm not an expert but I think amount of endo is irrelevant when it comes to pain ie you have stage four and have no symptoms or no pain and you can very mild endo but severe amount of pain and unpleasant symptoms. Mine is located in my Pouch of Douglas and I didn't have much but because of where it was it caused abnormalities within my cycle, infertility, and bowel issues.

I'm sorry your doctor's haven't explained it well- my consultant gave me so much information when I was drowsy after surgery! Why do they do this!!! You should have discharge notes? Mind you they can be vague! Do you have s follow up appointment to discuss managing the condition as there is no cure for it?

I hope you get answers soon xoxo

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Hi, yeah a few people have said the amount is not always linked to the pain. This is not something that was ever mentioned to me by doctors though.

I did have a follow up appointment, in which the consultant was very dismissive because there was so little endo and simply advised I stay on the pill (I didn't want the mirena coil). She seemed to think the small amount of endo couldn't be causing my pain and symptoms.

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How odd. I am sorry your pain was dismissed. Give the pill a go but if you dont feel any improvement then do go back to discuss other options with your GP. Its not ok for them to leave you in pain.

My endo caused me huge pain and I feel your frustration no pain killers worked! My mine was treated as i am trying for a baby -i did fall but I lost the pregnancy awaiting to try again!

I was advised by my consultant to go gluten free and lactose free as that ease the endo symptoms. I find that does help my bowels. I know it's a drag but could help.

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Yeah that's my plan :)

Aw so sorry to hear that! I hope it works out for you!

I have thought about changing my diet to see if it helps, might try some similar tactics when I move back to uni (where I can be more strict haha).

Thanks for the advice :)

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hi jess - i have three black spots which look like endo in my pouch of douglas - causing severe stabbing from uterus , vulva burning , repeated uti , butt stabbing and few lesions in the left uterosacral ligament and few spots on pelvic side wall , and filmsy adhesions . i underwent lap surgery , the doc though not an endo specialist said i was imagining the pain and since its mild , she did'nt want to remove them and felt such superficially mild peritioneal endo cannot cause so much pain . i'm in a lot of pain everyday unable to carry on my daily chores , i plan to fly to us to meet an excisionist ,can you pls suggest a surgeon , i would be happy if you could pls recommend the surgeon you are consulting right now .regards pinkypop

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I have private messaged you his details xoxo

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