Advice needed after lap: Hi ladies, I just... - Endometriosis UK

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Advice needed after lap

Katinldn profile image
Katinldn
โ€ข13 Replies

Hi ladies,

I just needed a bit of advice after reading through my surgery notes. On Monday I had my 4th lap to remove what turned out to be very thick bands of adhesions in my pouch of Douglas. After six years of being misdiagnosed and being told I just had IBS it has been a huge relief to get this diagnosis. What concerns me however is some of the additional things noted. They said that they found what looked like old endometriosis (I had three laps in my early 20's for stage 4 and had it successfully removed) on the right of my uterosacral ligament. Does endo leave scaring? Is this something i need to be concerned about? They also said that my cervix was flushed to the vaginal vault. I have had a look online but can't find anything that makes sense. I have a bicornuate uterus and had a septum removal 18 months ago and I am wondering if this has damaged the cervix?

Any info would be hugely appreciated ๐Ÿ˜€

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Katinldn profile image
Katinldn
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sarahgregory profile image
sarahgregory

Hi, hope you feeling ok after your lap?

Sorry I can't help with advice as new to all this myself and still not had a diagnosis myself yet, but I have been diagnosed with IBS and have been wondering if it is really that so I would be interested to any replies you get.

Hopefully somebody on here can help with some advice X

Katinldn profile image
Katinldn in reply to sarahgregory

Thanks so much for your reply. The best advice I can offer is that you know your own body and only you know when something feels different or wrong, so follow your gut and keep pushing until you are satisfied with your diagnosis. The symptoms I developed as a result of my adhesions were quite unusual compared to what I had suffered from before so i knew something wasn't right immediately. In my experience, IBS was the diagnosis they labeled me with when they couldn't find anything else. I have many friends and family who do not have endo but do have IBS and my symptoms were pretty extreme in comparison. What type of symptoms are you suffering from? Wishing you lots of luck in getting your diagnosis ๐Ÿ˜€ x

sarahgregory profile image
sarahgregory in reply to Katinldn

My bowel issues included diarrhoea, bloating, rumbling tummy, stomach feeling tight and painful. I had a colonoscopy which came back normal. My other symptoms are gyny and include a 8.5cm cyst on left and 3 smaller cysts on the right all found by ultrasound and MRI's and then I have pain on left hand side in pelvis, round to back, down bum and down leg. My general gyny thought my symptoms were 2 fold and sent me to a gastroenterologist about my bowels etc who did the colonoscopy and said as nothing there he thought it was IBS and put me on the low FODMAP diet.

I am now on Prostap monthly injections to see if they help with gyny pain.

What is your next step? X

xnanookx profile image
xnanookx in reply to sarahgregory

you really need to push to see an Endo Specialist, what you've just described could have been written by me about me, I have GERD, Acid Reflux, Stomach Ulcer, DIE on the bowel, colon, Rectum, bladder, I have organ binding, and although my uterus is free of Endo it's a breeding ground for Endometriomas (chocolate cysts) they continually encase the ovary and tube on each side. There's too many to list. Diagnosis; Stage 4 Deep infiltrated Rectrovaginal Endometriosis.

sarahgregory profile image
sarahgregory in reply to xnanookx

Hi xnanookx,

Is your reply for me or for Katinldn please? X

xnanookx profile image
xnanookx in reply to sarahgregory

You hun xx

Katinldn profile image
Katinldn in reply to sarahgregory

I agree that you should definitely push to see an Endo specialist. Over the years I have had countless colonoscopy's, sigmoidoscopy's, MRI's, ultrasounds etc and they all came back normal. It was only when they did the lap that they found the problem. For me, now I have had my pod cleared, i just have to continue taking my pill without breaks (no periods) and pray that it doesn't return. I really hope you get some relief from the pain with the injections but in the meantime, i would really try and see someone who has a good understanding of the impact endo can have on your other organs โค๏ธ xxx

sarahgregory profile image
sarahgregory in reply to Katinldn

Thanks Katinldn :-) X After reading posts and replies on here I had decided to get a referral to a bsge specialist and now just need to decide whether to ask my general gyny (not sure how he will take it though as he knows all about my previous history and may think I don't think he good enough) or whether to chicken out and ask my gp? X

xnanookx profile image
xnanookx in reply to sarahgregory

Hun ask ur Dr its a faster process xx

Katinldn profile image
Katinldn in reply to sarahgregory

Good luck at your next GP's spot. Will keep fingers crossed you get the referral you need x

sarahgregory profile image
sarahgregory in reply to Katinldn

Thanks very much katinldn. Hope you get some answers soon X

YvonneMM profile image
YvonneMM in reply to sarahgregory

๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ™‹

sarahgregory profile image
sarahgregory

Thanks for all your replies Kelly. You really are going through it all! Hope you get some treatment you want when you go back in June. X

In just over a week I go back to GP for next Prostap injection so will mention the referral then thanks.

Take care and thanks again X

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