No endo found

[Tiffanyaching]

Hello everyone,

I had my laparoscopy yesterday, and no endometriosis was found. However, my bowel was well adhered to my abdominal wall. The surgeon said that there may have been endometriosis at one point, but it was treated by my Mirena coil. Can this happen?

I asked her if the adhesions would hurt more during different parts of my cycle and she said no, plus the pain is usually on my right side and the adhesions were on the left.

I had my coil replaced, and they treated the adhesions. I have to go to my GP in 6 weeks to check that my coil is in the right place, should I mention my concerns then and see if I can be referred to a specialist? I have so many of the symptoms of endo and I find it hard to believe that all of my pain and symptoms were caused by the bowel adhesion.

Sorry for the long post, thank you for reading it xx

[Moon_maiden]

HiI’m not sure that the coil cures Endo, but others may differ in opinion. If it was that simple it would be well known about.

I’ve heard stories first hand, of women being told they don’t have it for a specialist to say they do from photos.

Did they excise the adhesions? If just gynae I’m assuming not. Did they take anything to run through histology to check if Endo? It’s one of the sure ways of knowing what’s Endo and what’s not.

I’d suggest getting a copy of your records to see what’s mentioned and talking to your GP about a further referral.

I had a hysterectomy last year and still getting abdominal pains. This was supposed to be an Endo expert but no colorectal involvement when I was told there would be. An MRI this year showed some adhesions from small bowel to pelvis. I paid to see colorectal at a different hospital with an interest in Endo.

[Tiffanyaching in reply to Moon_maiden]

Hello, thank you for your reply!

I didn't think the coil could cure endo either, that really confused and upset me when she said it, I felt like she was dismissing my concerns.

They detached my bowel from my abdominal wall, as far as I'm aware that's all they did.

I was told that pictures were taken but I was never shown them, I thought I might phone and see if I can have a copy.

Xx

[Moon_maiden in reply to Tiffanyaching]

On the hospital website there will be a form to fill in for your records, just a couple of ID, they always say allow up to 28 days. You never know gynae sec may send them across.Did the discharge mention the adhesions being taken away? Worth checking if not.

It really does feel like you are being dismissed, if you can ignore that and get some answers. You have to keep convincing yourself you need to, but don’t let them.

You can PM if you want to when you feel as though you want to give up. 🙂

Not sure if this helps

[Tiffanyaching in reply to Moon_maiden]

I feel like I wasted their time, but I'm sure there's something else wrong.

I spoke to the secretary earlier, she's asking my consultant to dictate a letter to me. I know they're discharging me,and I've asked for a copy of the pictures but I don't know if she's sending me them.

I'm hoping my GP gets them so I can ask about a second opinion.

Thank you, you've been really helpful xx

[Moon_maiden in reply to Tiffanyaching]

You really haven’t wasted their time at all, you are in pain and have a right to know why. Never feel that way. We’ve become ingrained into thinking it and that’s not what the system was set up to do. The health system is allowing surgeons to operate who don’t necessarily know what they are looking for and so wasting your time. You’ve been through an operation and taking time out to recover, or hoping to and no real answers. You’ve paid for this with your contributions. Let us know how things go. 🙂

[EndoSuckss]

Hi!

As above, I know the coil can 'help' ease the symptoms of endo, I wasnt aware it could 'cure' it - might be worth looking in to this furher. It might be that the adhesions might not be related to endo at all (for example, I have a scar from previous surgery adhered to my uterus at the moment - but it isn't due to the endo!)

Was your lap done by a general gyne or an endo specialist? If not someone specialising in endo, then I'd probably ask for a second opinion - even if just got peace of mind!

[Tiffanyaching in reply to EndoSuckss]

Hello, thank you for your reply

I don't think the coil cures it at all, I've never heard that before and I've done a lot of research.

It was a general gynae, she didn't even come to see me herself after the surgery, I saw the registrar.

I've no idea how the adhesion formed if it's not endo, I've never had surgery or anything before.

I'll see how much pain I'm in once I've healed from surgery, then see about asking for a referral.

Xx

[G3miniStar]

I think from what I've been told (I had a Mirena placed during my lap) the Mirena stops endo growing and turns it a bit like jelly as it doesn't have hormones to feed it. I guess it could have fell away on its own without a blood supply to keep it solid 🤷‍♀️ that's good news though!

[Tiffanyaching in reply to G3miniStar]

Hello, thank you for your reply!I've not heard that before about mirena, maybe that's what happened?

They told me it was good news too, but I don't feel like it is as I'm sure that my pain isn't all caused by a bowel adhesion. Also, I don't know how the bowel adhesion formed in the first place.

Maybe I'm wrong, I'm hoping to be in less pain once I've healed from the surgery, you never know until you find out I suppose!

Xx

[Dogmad6]

I'd ask for a second opinion from an endometriosis specialist. All my pain has always been on the right side yet my left side was just as severely affected by endometriosis. Also how did your bowel get stuck with adhesions, something must have caused that. A coil isn't going to be a cure, it's just to relieve symptoms. Otherwise everyone could be easily cured!

xx

[Tiffanyaching in reply to Dogmad6]

Hello, thank you for your reply!That was my question, I've never had surgery before so I don't know how my bowel became adhered, I doubt it just did it by itself!

I don't think the coil is a cure at all, I was upset when I was told that it might have 'fixed' any endo.

I'm going to see how much pain I'm still in once I'm healed from the surgery and ask for a second opinion.

Xx

[Dogmad6 in reply to Tiffanyaching]

Yes good for you. I'm sure that is the right thing to do. I got fobbed off for years which is a common thing with endometriosis. One consultant said my adhesions were just one of those things! I turned out to have extensive severe endometriosis. xx

[Lwipa]

I was told no endometriosis found after my first lap and I hade supposed adhesion related disorder. However pain got worse. Finally I talked doctors into doing a second operation, the day of the surgery . The endometriosis specialist looked at my previous pictures and saw that the endometriosis had been there are all along. U really need to get a endometriosis specialist to look at the pictures.

[Littlenestofvipers]

Hi Tiffany! I had my lap yesterday and have had almost the same findings. All my pain is always on my right side. They’ve found some Endo but not as much as they were expecting and this was on my sacral plexus. My bowel was also stuck to my abdomen and I had extensive scarring and adhesions going all the way up to my liver, they said the cause for all this scarring was due to having pelvic inflammatory disease in the past. Now there’s a very high risk of ectopic pregnancies for me. Did you have an Endo specialist conducting your surgery? Hope you’re doing ok xxx