Referral to Gastro

[VioletCoffee]

If you’ve seen any of my posts before, this is a little update!

So I had my appointment with gynae about a week ago now that I cried throughout AGAIN. My laparoscopy found no endometriosis but I have all the symptoms and a family history of it so I’m feeling very defeated and confused. Anyway, the appointment was with my surgeon’s registrar so she only had the notes that he wrote down to go off that really didn’t indicate much at all.

After thinking about what we could do, they finally recognised my bowel issues and are referring me to gastro. My symptoms are more inline with bowel endometriosis and that’s also what my mum and auntie had specifically. I’m wondering if they scan my bowel specifically or do a procedure like a colonoscopy, something might be seen?

I’ve asked for a copy of the photo they took during surgery and she said that should be okay. They’re referring me for treatment for vaginismus because of the painful sex and pelvic exams I experience. Whether that helps, we will have to see.

I was refused referral for an endo specialist though. I think I’ll see how gastro works and if they try fob me off with an IBS diagnosis when it’s obviously so much more than that, I might go privately to an endo specialist.

thank you all for your support on my last post, it really meant a lot to me 💗

[Trekkie84]

I am sorry you are still looking. Endo cannot be seen through a colonoscopy but it's really important you have one to exclude other things for tour diagnosis. My friend had a similar experience to you and for example she's found out she has diverticulitis. If you are deeply concerned about endo may be worth getting an MRI and having it checked by a specialised radiologists who can see the features. Easier said than done. Although in theory if your surgeon is an expert of endo and they haven't seen anything that should be excluded. I imagine it's not easy to put your mind at rest if the signs are there and there is family history

[VioletCoffee in reply to Trekkie84]

Thank you so much! I think if gastro don't find anything, I'll ask my gp specifically for a referral to an endo specialist to do some sort of specialised scan. Trying to feel hopeful but just had my period and was in bed for most of it, and my bowels were really not good during it either

[Monsi]

I can only imagine how deflated and frustrated you must feel. After multiple ultrasound scans and appointments with a gynecologist they said they couldn't pick anything up even though having a deep constant pain on my left hand side and other symptoms. As I hit a brick wall I thought perhaps it may be my colon or bowel so was referred to a gastroterologist for a colonoscopy, they cut out two polips (so don't regret having it) however was not the main source of the pain. He then recommended a bowel and pelvic MRI which picked up deep infiltration of endometriosis in certain areas in my pelvis as well as the thickening of the Pouch of Douglas. I'm now in the process of arranging my laporoscopy where I will have two surgens as a Colorectal Surgeon is also required. I would recommend an MRI to try obtain a better diagnosis. I hope you get the answers you need and keep persevering!

[VioletCoffee in reply to Monsi]

Thank you so much for the advice! I am so happy you're on the way to finding your source of pain and it is a relief to know that people have been through something similar as these types of issues often make you feel alone as it's all inside your body and no one really will understand the pain you're in x

[wonderlander]

I’m going to echo what others have said and recommend trying to get an MRI.

After multiple ultrasounds I was told everything looked normal and I felt exactly how you feel now - defeated and confused. I felt like they thought I was making it up! Like you, it’s in the family and I had all of the symptoms, so I was utterly convinced.

I was referred after a high ca 125 blood test to gynaecologist. It was only then when I mentioned I had PR bleeding they referred me for an MRI, and the MRI showed/heavily suggested deep infiltrating endometriosis.

As I mentioned the PR bleeding I also had to undertake bowel cancer tests. This was entirely separate and was on the basis of ruling things out. I can’t tell you how many times I was told my medical professionals that “everything looks fine so far and it’s probably to do with the endometriosis but we’re going to do these tests just to see.” With the bloating and bleeding etc it was good to be able to put my mind at rest.

I’m so so sorry you haven’t had anything conclusive yet. Your situation sounds just like mine and I felt, and I know this sounds silly, hurt and rejected by it. I was 99% sure it was endometriosis but having it confirmed gave me so much validation. If you’re able to get an MRI you may end up having a similar experience.