My first Lap found no endo! Feeling lost... Am I dreaming the symptoms!?

[Sezzieb]

Just had my Lap yesterday.. Feeling very sore and find it difficult to breath with pain in my diaphragm and shoulders. Exhausted with the constant issues that I've been dealing with. Painful periods since 13 yrs now I'm 27 I don't know how much more I can take. It is excruciating pain and constant tiredness and exhaustion. Feel really lost now, the dr said to me an hour after lap that all was clear, which I was relieved to hear but just so frustrated as I have experienced nearly every symptom with endo. Drs were 99% sure I had it! they were shocked I was clear. just don't know what could be the issue now. Feeling lost and frustrated. Any help would be appreciated! X

[Sezzieb]

Thank you for your reply! Just feeling more lost..I had the understanding that it was endo.. Then to go through the lap and then be told it wasn't that I'm just feeling more and more confused.

[Impatient]

If there is no visible endo - doesn't rule it out entirely - but the next thing to check for is a condition called Adenomyosis - very similar to endo but is only forms inside the uterus muscle walls and is hidden from view of a laparoscope camera. It can sometimes be seen during a lapif you are on a period and the adeno has caused the outside surface of the uterus to look bumpy not smooth. Like endo, adeno bleeds with your periods trapping that blood inside the muscle, and the body eventually re-absorbs that blood- same as with a muscle bruise on the thigh for example.

It takes many days for the blood to be re=absorbed by the body and the discomfort to ease off.

If your adeno is deep inside or you were not on your period at the time of the op it would be almost impossible to see it.

There is a fab website with all you need to know about adenomyosis

adenomyosisadviceassociatio...

It should be your next thing to be investigated when a lap doesn't show endo but you do have the monthly symptoms of endo.

Most ladies have one or the other, to have both is rarer. They are separate conditions. Adeno doesn't spread everywhere- it stays only within that muscle tissue of the uterus. So there is a cure and that would be a hysterectomy when you are finished with babymaking.

Meantime the treatments are period management options -just as with endo.

Birth controlpills, mirena coil, arm implants etc and pain relief.

[Hidden]

Oh, I feel so bad for you. My first lap came back "negative for endo". But what they don't realize is that it can be clear and VERY tiny to start. I had another lap done 5 years later (early this year) and I have stage 3 (moderate) endo that was absolutely clear as day. I found out from research and my new gyno, that just because it wasn't seen doesn't mean you don't have it. They should have taken samples from all over suspected areas and then checked them under a microscope. I am still fighting my pain and misery, and I wish you lots of luck.

[curlyjo]

My thoughts were that it might be adenomyosis (as mentioned above). I have been diagnosed with this, but I have endo too but it didn't spread (thankfully) beyond my womb. As I thought it was difficult to pick up in a lap, I asked the surgeon how she knew I had adenomyosis. She said you can see the signs through the wall of the uterus (again as has been confirmed above). Anyway, the course of treatment for me would be GnRH injections and then hysterectomy but I want to avoid this if at all possible.. mainly because of my age. I don't want surgery until I'm older because of the effect I saw the hysterectomy had on my mum. Anyway I've been exploring other options (other than permanent pain relief! because the mirena coil has only reduced the pain by half) and I've been advised by one of the girls on this site to see a dietician as she said she has managed to decrease much of her pain by diet alone. If you are interested in this info let me know. I'm going to give it a try!

[Hidden]

Hi there, I can imagine your frustration I really can but it is good that you don't have endo. I wish I had been as lucky after my lap. Having said that if u r in pain keep pushing them. It won't all be in your head. Pain is there for a reason, its to alert us to something not being right. Keep at it. Don't worry about the shoulder pain it will be gone in a couple of days. Good luck and let us know how u get on.

[GemmaG1]

Good morning! I had a lap 2 weeks due to pain in my bottom during my period, when I go to the toilet to open my bowels the pain can be so bad that it has made me faint in the past! I was so sure it'd be endo as its always connected to my period.........however lap was clear!

Similar to you I now don't know what to do? Just feel like no one believes me! Got to see a colorectal surgeon next but I'm still not convinced its not gynae related?

It is comforting to hear someone else's story as I think we feel so alone at times? not sure this answer is v supportive but I hope it helps you to know your not alone out there xxxx

[Sezzieb]

Thanks so much to everyone for their replies.. I was sooo concerned that this was the end of the road and I wouldn't get a explanation for the pain I'm experiencing. I will now defo look into adenomyosis as well. It is a relief to hear others stories and know that I'm not just a hypochondriac! Sometime I feel exhausted by the pain and having to explain over and over and over to drs, consultant and work colleagues why I'm not my bubbly self.. Curly Jo I would be very Interested to hear more about the dietary end of things.. Esp due to the bloating side of things and constant discomfort. Impatient thanks for the link I will be checking that out straight away! Big thank you to all the girls who wrote back! Just want you all to know its a grest relief and that it's nice to know I'm not alone! Thank you