Morning,
Can you have endometriosis inside the bowel, bladder, cervix etc and non on the outside?
I have been diagnosed with endo on one of my ligaments and on my bladder. They found something in my cervix and not really sure what it is. I'm getting a colposcopy this week.
xx
Hi Stacey, yes you can. Endometriosis likes to wonder. Mine has a habit of going into my bowel. You can get it burned off, but it will grow back.
Morning, yes you can have it in your bowel, bladder and cervix you can basically have Endo anywhere even in your lungs etc to check if it’s in your bowel you will need a camera test in your bowel to confirm and. Laparoscopy for the rest xx
Hi there, did they diagnose this through an MRI or through a laparoscopy?
Yes can be diagnosed by laparoscopy but MRI not always show full picture but it can show the signs of presence.Mine was intially diagnosed by MRI but my doctor later conducted diagnostic lapro for clearer picture.
They found it during my lap. I have endo on my bladder but they don't think its DIE. I went for a colposcopy so the doctor could have a look at the abnormal cyst in my cervix. She said yes there are nobothian cysts in my cervix but there was something she wasn't sure about so she has sent it away for biopsy. I'm wondering if its endo, hopefully nothing more serious xx
Yes you can have deep endo in your bowel, bladder and cervix. It is likely the uterosacral ligament involved as they run from the cervix to the sacrum round each side of the bowel. These ligaments are the most common site of deep endo and it can infiltrate the cervix from the ligament. In terms of endo inside the bowel and the bladder, this can be due to endo infiltrating from the outside but it can also originate inside. Deep endo is not very well visualised at a lap and sometimes can't be seen at all, such as when it is outside the peritoneum such as in the rectovaginal septum. Expert transvaginal ultrasound and/or MRI are crucial to 'map' the pelvis prior to a lap to guide the surgeons.
Are you being treated in a tertiary endo centre as this is where deep endo cases must be referred if not already.
Burning (ablation) is not a treatment for deep bowel endo. It must be excised.
Wow you sound very knowllagble !
It's funny you mention the utero sacro ligament because they found endo on mine.
As for the abnormal cyst in my cerix, I saw a doctor on Wednesday and she said there was a nobothain cyst in my cervix but there was something she wasn't sure about so she sent for a biopsy.
I'm wondering if it could be endo then. Hopefully nothing more serious!
I'm currently in a battle to get referred to a endo specialist on the NHS. They only accept patients that are stage 3/4 and apparently I'm only stage 1. So I put in a official complaint.
I complained about them leaving the endo on my bladder and that the guidelines state that if there is endo on the bladder you warrant a referral to an endo clinic.
It's bad enough to leave but not bad enough to referee on. I think thats really bad!
The clinical director called me a couple of weeks ago to talk about it and she agrees that we need to speak to the endo specialists for a second opinion. I'm waiting to hear if they will give me an appointment.
xx
The criteria for referral to specialist centres on the NHS are stage 3/4 and rectovaginal endo. This is clear in the treatment specification. If you have endo infiltrating the US ligament then this is RV endo. I run a UK endo guidance group with lots of info files on how you can be referred if this is the case. You can post your discharge/lap report on there. If you would like to join pm me. x
That's very interesting to know. I told the clinical director that im really worried they missed endo around my bowel or pouch of Douglas because of all the symptoms im having post op. No better at all.
They have taken it off my ligament and I won't find out if its endo in my cervix until June.
My discharge letter literally says I have an abnormal cyst in my cervix book in for a colposcopy. I haven't had a lap report and I'm 2 months post op.
I'm just PRAYING the endo specialists let me have an appointment with them, will really put my mind at ease xx
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