Do I still have Endometriosis?

[Rock-Cat]

This probably sounds bizarre and silly but I'm struggling with the concept that my endometriosis is back or never went away in the first place. I had excision surgery back in 2021 and was it success. Doctor said he got rid of it all and he wouldn't see me again. I took this to mean I had Endometriosis but don't anymore. Less than 18 months on I feel as bad as I did before my surgery, chronic pelvic pain everyday, and horrendous fatigue. Back on a plethora of pain killers. I thought Endometriosis was a thing in my past so am not sure if it's something that just keeps coming back or not and how do I get my GP to push me to the right services first time if it is that. I wasn't prepared for it to come back, if it is back so feel a bit lost as I thought it was all behind me. Many thanks for your comments.

[Lindle]

Endo is a disease of the immune and endocrine systems with the lesions being the end result. We don't know yet how the lesions originate as in where the tissue comes from although there are various theories. At a lap a surgeon can only remove what they can see but endo can be well hidden or deeply underneath the peritoneum in which case it can't be seen at a lap at all. Deep endo can now often be seen on scans but there is no guarantee it will all show. I don't know if you had a scan first.

Ultimately no surgeon can say they got it all - that is actually a bit arrogant and also indicates a lack of understanding about the disease in so far as we know anything at all.

There are several risk factors for recurrence of which the failure to get it all and the severity of the endo are two. Is there any sort of detail on your discharge note saying how severe it was? Otherwise it's a good idea to get your records to see the actual lap report. Will DM you.

Where to go from here depends on what stage your endo was and where in the UK you are. Are you in England?

Edit: Have just seen from your previous post that you had what was described as stage 2/3 endo in pouch of Douglas and around your sciatic nerve. Stage 3, if it was correctly graded, in that area should only be treated in a specialist endo centre by a multidisciplinary team and should have involved an expert scan first. It does sound like you might not have been treated by an appropriately experienced surgical team.

[Slaterl]

Hi, sorry to hear your back struggling - I have been wondering the same! I had surgery in 2013 was told they had removed endo then I went on to have children in 2014/2015 I felt ok for a few years but then it came back all the familiar symptoms. I had a gynae appointment where ultrasounds showed no signs of anything so looks like I need another laparoscopic surgery. The gynae consultant said it’s likely to be endo as it never fully goes away and it just grows back and can be worse on top of existing scar tissue! Hope you get some answers soon!

[Gemmaa96]

hi, your surgeon may have removed what he can find. Unfortunately Endo does the majority of the time grow back. You need to see an endo specialist

[Walker24]

hi, sorry to hear you are in pain again after thinking it was in your past. I had an excellent surgeon for my excision but he told me he could only get what he could see. I have pain and other symptoms again but not to the extent prior to my surgery thankfully. My specialist tells me if could either be the scar tissue or the endo is somewhere he cannot see. Ultimately I know I will need the surgery again but from his point of view it’s about prolonging the length of time in between. Not sure this helps you but it’s always good to know you’re not alone in this x

[Cactus80]

I'm in the same position. Had surgery for rectovaginal endo back in April 21 although I was advised I may need multiple surgeries i didn't think it would come back so soon. I felt mild symptoms return Jan 22 but the last 3 months I have had daily bowel and back issues and struggling to function. Been waiting over 14 monthd for an appointment and didn't have my 6 months check up after surgery. I'm thinking of you x

[5M9H in reply to Cactus80]

This is so similar to me! I had rectovaginal removed last July and now my symptoms are back maybe even worse

[G3miniStar]

Hiya, I'm awaiting my third Endo surgery in four years in the coming months. I think very few sufferers are one and done unfortunately. It sucks and I'm sorry you're going through it all again. As everyone has said above, your GP is your first step and it might be worth doing some research on Endo itself and the specialists in your area. Good luck x

[5M9H]

Awful isn’t it, this was me in 2019 just told I had endo and it was removed was then discharged. 2022 another surgery removed extensive endo, luckily done by a specialist! 6 months later all my symptoms are back… always here if you need a chat!