Early last year I was diagnosed with stage 2 Endometriosis in my pelvis after laparoscopy and removal. Almost a year on and after continuous nagging to my gastroenterologist I today finally received my MRI results after a 9 week wait.
The findings show Endometriosis is not only still in pelvis but has developed in my bowel where it appears to have stuck my womb to my rectum. Obviously after been really upset all day. Not only did the surgery to my pelvis not work , I have now have a new area of concern and it feels a little more serious.
Ive battled almost 10 years with ‘IBS’ and am now pondering as to whether this has been bowel endo all along.
Anyway the letter states my gynaecologist has been informed and they will let me know what they want to do next.
Has anyone been/is in a similar situation.
Thank you , can ALWAYS count on you guys when Endo strikes
K x
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K-Endo
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A few questions first, sorry if I'm asking stuff you may have already mentioned elsewhere:
Is the gynacologist a specialist in endo?
The reason I'm asking is because if they're not they quite often will only look for problems during the lap relating to the reproductive system so the uterus. That means they will not look for endo around the bladder or bowel as they don't have the training / experience / expertise to look round there.
What was the removal method?
Most often gynaecoloists will remove endo via laser, diathermy, abrasion, ablation. These are all okay, and are the quickest least invasive method of removal of endo but they only remove endo cells from the surface leaving deeper endo which can regrow. Excision is the best method to prevent regrowth as it cuts out the endo so regrowth is a lot slower however this is usually only carried out by endo specialists.
So. . . what to do next?
Well you don't need to suffer and cope with it. There's lots of stuff you can do but it requires you to push a bit more for treatment / investigation. Have a read of the Endometriosis UK website for treatment:
Look into the NICE Guidelines for treating endo, this is a path which all NHS doctors should be following, so get to know it and push for the methods you want. nice.org.uk/guidance/ng73
You can push for investigation / to see an endo specialist through either your gynae consultant, through your GP or check out a BSGE center near you. Google BSGE. They're specialist centers.
As you've mentioned bowels you should ideally be seen by an endo specialist and a colorectal (bowel) specialist together or they'll consult with each other about removal of your endo.
In summary as your symptoms sound quite horrible, it may be an idea, based on my experience, to push for being seen by an endo specialist with a colorectal specialist present for your lap with removal of endo by excision.
Aww thank you for such a thorough and detailed response , I really appreciate it.
My entire medical history has only ever been done through general GP referrals etc. I am under both a gynaecologist and a gastroenterologist both no neither are Endo specialists. If I could afford to , I would go private but sadly I’m just not in that kind of financial position.
The laparoscopic last year was done by ablation.
Thank you so much for the heads up I will try and seek out someone more specialist , I hadn’t realised this could be done without a charge.
Thank you again , the information really means a lot. Just hope I can get somewhere.
Yeah it's a case of pushing for what we want which means lots of research, bit rubbish really.
Financially; if you have health insurance through work or your partner has / parents / spouse then they can add you to theirs. You can take your own medical insurance out via eg BUPA but doing it on your own they tend to not take on those with pre existing conditions. But through workplaces / family it seems more relaxed. Some private hospitals do payment plans too.
You could look at private for the consultation - about £200 and because all private specialists have to work in the NHS (a certain number of hours) they may be able to add you to their NHS operating list; it is a wait but it's the same specialist.
Perhaps look at thr BSGE website, they are free, and find one near you then give them a call to see what they suggest / their process is.
I posted my experience of my endo a while back, although it's not quite the same, it may make you feel less alone and perhaps help with some ideas:
Yes I’m definitely going to print out those NICE guidelines and take them to my next GP appointment , probably have just sat back and allowed them to take it over really ☹️.
I’m a student , single parent on my own with no family , unfortunately. I will look into other alternatives though as like I say the waiting around is honestly half the battle.
I’ve just read your post , it was beautiful and I could really resonate with a lot you said. Especially with the diet , Ive switched to almond milk and I try and stay completely clear of wheat as I’m gluten sensitive. It can be hard because it can feel so restrictive and then on a ‘flare up’ day you kind of just feel like ‘what’s the point’. I’m usually in a better frame of mind regarding Endo but like I say after this news today , you just feel like you’re back to square 1.
Did you end up going private in the end through your health insurance?
Im in same situation and im not sure why you been told its stage 2....mine is stage 4 & in almost all cases bowel is stage 4.
I wasnt happy with my hospital & GP referred me to another clinic. Im on a treatment plan & im in control. Please see if you are under the care of one of the 50 endo clinics (bsge.org.uk) and if not get a referral. I wish you all the best & send me a message if you have any queries.
Hi sorry no the endometriosis in my pelvis was/is stage 2. I have no idea what stage it is in my bowel the MRI results didn’t state anything more than what they found. Yet again it’s just another waiting game to hear as to what happens next 😞 waiting is half the battle I think! I have a GP appointment on Tuesday and I’m going to request I am referred to one of the specialist centres.
I’m in this situation right now! I had a surgery which told my my endo was removed from my left pelvic wall, after being fobbed off 3 times with IBS I demanded a change to a bsge centre and I had my lap last Tuesday; stage 4 endometriosis on my left pelvic wall and deep infiltrating into my bowels, bowel is stuck to my pelvic wall. I’m currently waiting for an MRI to show the extent of damage in my bowels to decide what they need to do in the next surgery. All I know is that if it’s too deep, they’ll need to resection the bowel and I could end up with a stoma bag. How long did it take for you to get an mri scan if I might ask??
I’m so sorry to hear that. The MRI referral was pretty quick actually maybe 2 months? But I’ve just waited over 9 weeks for the results and my initial lap took a year to come through 🙄they really don’t rush in this game x
They couldn't complete a hysterectomy on me because they said I had a lot of endo and bowel stuck to womb, they just said it was on my notes in case I needed the op in future, as would need a bowel resection, didn't suggest doing anything else.
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