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Endometriosis UK
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Feel let down

I’ve just had an appointment with a different endo doctor than last time. I asked to see another doctor because I felt like the old one didn’t tell me properly what happened in my surgery etc and just didn’t think he was very good. I’ve just had my appointment with a new one and it was worse than the last one. I felt like he was just trying to tell me to have a baby because it will ease my symptoms and he’s told me I probably have ibs due to my bloating and bowel symptoms. I feel like it was just a waste of time and he’s sent me back to my gp asking for ibs medication...

Don’t know what to do 😩

13 Replies
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Hey! Sorry to hear your feeling like this. We sound pretty similar with the bowel issues also.

Have you gotten a diagnosis of endo yet??

Ive been fobbed off for year with ibs.

Turns out I have slow transit and anismus (my rectal muscles were working backwards) bit sonce Ive had a procedure for that I finally just had my lap. X

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Yeah I was diagnosed in September with mild endo and a lot of adhesions and he said something about my bowel being in the wrong place so he moved it to where it should be? I don’t really know he didn’t make any sense x

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Thats terrible that you are not being treated for pain or given a plan to manage symptoms.

I would keep going through doctora until you have found someone who will take you seriously (tedious I know) but when someone really understands the condition you will feel supported properly.

There are specialist centres near me, so have a look around or ring your local hospital and ask around for centre's xx

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Where do you live?

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I live on the Wirral. I am currently being seen in a specialist centre so was surprised when he advised pregnancy 😩 I went to the walk in centre about a month ago and they prescribed me diclofenac suppositories which have helped but he wasn’t aware about this x

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Its disgusting how getting pregnant even comes out of their mouth. Makes me so angry!

You will just have to keep on and on at your gp until they can refer you to someone who knows their speciality!!

hope you get somewhere soon xx

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Thank you xx

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If you have adhesions and they have stuck to your bowel it can pull it out of alignment making it have to work harder. At my first lap a general gynae gave me this as my diagnosis, took a BSGE Centre to find endo and they suspected this was the cause of the adhesions.

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oh no :( that's not good.

You did the right thing; so don't feel you did something wrong. I've heard some say they have to see a few doctors to find one that works well with their way of thinking....keep trying. Perhaps see if there's a different clinic / center you can go to an ask for you results to be transferred there; sometimes it may just be a different one out of your local area, or a teaching hospital...

Others may be able to offer you more advice: my specialist consultant is really good, possibly because it was private - insurance through work, otherwise I wouldn't be able to afford it.

A good specialist will want to find the cause of your problems and work with you to find what you'd like best, rather than mask it with medication, pass it off to someone else or suggest pregnancy / hormones as the first point of care.

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This is a different hospital to last time. Last year I was seen in spire but I was referred to the endo centre close by in January. He said he’s going to contact the dr from spire and get the notes from there so he knows what’s gone on but he doubts that I will need surgery again as he thinks it’s just ibs related. I feel fobbed off x

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ahh no, I think some women have suggested BSGE clinics, may be worth googling..

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My advice is to trust your instincts here. You know you're not being listened to and your symptoms are not being taken seriously. You deserve to be treated with respect and to be fully informed.

Do you generally find it difficult to be assertive? I definitely do, especially with doctors. I've accepted being turned away many times, with diagnoses of IBS and psychosomatic symptoms. I'd just accepted it, it was me, its stress. I've been in therapy for a year for psychosomatic symptoms, all the therapy has been good generally but all my symptoms are the same. On Friday, through a referral to orthopaedics about back & hip pain, I've eventually found out I have stage 4 endometriosis. I look back and think I should've trusted myself, I knew something wasn't right inside me. It felt like something was in there. If only I'd not just taken it and demanded more, I may have got some treatment or help earlier.

One thing all my therapy has taught me is that I find it very difficult to all for my needs to be met. I worry I'm coming across as demanding and needy. But this always results in me not asking, saying I'm fine when I'm not and my needs not being met. But I'm trying to change this and my next step is to go to my GP on Thurs and demand to be referred to an endo specialist clinic. I'm not taking any less. I just wonder if I go in with this type of attitude, will they treat me differently... I suspect they will.

This may not apply to you but I thought I'd share.

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Yeah I felt like he just wanted me in and out as quick as he could. He didn’t really ask a lot about my symptoms before diagnosis and symptoms now to be honest he straight away said about having a baby and about ibs. He said there are other organs in your stomach which could be causing the problem not endo which I understand. I think because it was so easy for me to be diagnosed I’m abit shocked now for all this to happen. I was diagnosed about 6 months from my first GP appointment x

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