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Endometriosis UK
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Feeling let down by endo specialist.

Hi ladies.

I’m beyond devastated and I don’t know where to turn.

Last week I was promised ; an appointment to see my endo consultant, an MRI, a referral to a colorectal surgeon.

Today I am told none of this is happening and basically my endo consultant doesn’t believe me; that I have faeces front end. I pass wind front end. Now I have urine leaking as wind passes.

And my wait is 8 months till lap; they won’t push it forwards.

I’m devastated by the lack of support and complete U turn.

Originally I had been referred to a colorectal surgeon by a gynaecologist but my fertility specialist cancelled the referral to refer me to a endo specialist and gave me the impression I would been seen by a colorectal surgeon whilst under this endo specialist.

I feel angry but very hurt and feel trust has gone.

I am speaking later to my nurse practitioner but I doubt she can help.

I don’t know where to turn I am never believed... 😪

23 Replies
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Huge hugs. So sorry you are having to struggle like this xxx

Can you investigate how to make a formal complaint that you are not being listened to and serious symptoms being ignored?

When I was seen it was by the bsge endo specialist first who then referred me to the colorectal specialist in the bsge endo team and he did a sigmoidoscopy so that path described to you would be pretty standard so far as I know.

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Thank you.

I felt let down when. I was promised further investigations and now I’ve got nothing ; not even pushing a lap closer. I am considering contacting PALS ; I don’t like to be a fuss but this is ridiculous.

I have spoken to my nurse practitioner who was disgusted by it and has booked me an appointment to see my GP. I have emailed my fertility specialist secretary to ask to reinstate my referral to the colorectal specialist and stated my symptoms.

I’ve had two laps already and my endo has never improved so I feel reluctant to do another one to wait and see how bad it is. Everyone said it couldn’t return that quickly after my first lap but my endo did; I knew it had but wasn’t believed. I’m so tired of not being believed. Sorry I am feeling sorry for myself. ☹️ xoxo

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I am really sorry to hear you're having such an awful time. I would suggest that your immediate course of action is to phone PALS at the hospital ASAP and get them to intervene (there should be contact details for them on the hospital website).

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I think I might have to.

I spoke to my nurse practitioner and she was horrified and has booked me to see my GP. And I have requested my fertility specialist can reinstate the referral to the colorectal specialist that he cancelled with good intentions 🤦🏽‍♀️it’s demoralising not to feel believed. 😭 but I will fight back 👍 xoxo

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From what you've described you may have a fistula and need help now. I know how difficult it is to complain, and how stressful, because I've been there, but honestly, please don't wait. Call them ASAP.

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Thank you. I just don’t know how to get medics to believe me 🤦🏽‍♀️

The endo consultant has dismissed my concern by saying “ fistula is unlikely” and “ it’s probably old blood not faeces “ like I can’t tell the difference 🤦🏽‍♀️ I’ve had old blood prior to every period last 7 years.

He will look for it when doing the laparoscopy ; that is an 8 month wait and they won’t push the date forwards based on my symptoms. He’s happy to leave for 8 months like this with these symptoms.

I’m seeing my GP on Tuesday and I hope she refer me a colorectal specialist. I’ve never had bowel investigations I think I need them xoxo

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Contact PALS at the hospital they will look into this for you

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Thank you. I will do when I’m less angry! xoxo

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Yes that’s wise, it took me two weeks before I was calm enough to contact them after I was told my operation was going to much later than I had been told, but it did get sorted xx

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Sorry you had to go through that and I’m glad it’s sorted. I feel like medics never believe me; they didn’t believe my endo could return so quickly until my second lap proved what I knew the whole time; it did 🤦🏽‍♀️ it’s exhausting. xoxo

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It is exhausting I really feel your pain and hurt, it’s such a shame that it’s so misunderstood and the struggle it is to get help. You gotta keep strong or try to and know your body, hopefully after my major surgery on June 11th things for me will be worth the long term battle. I wish you the best, but please contact PALS & get all your paper trails in order etc x

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I will be it has to taken seriously. I never done anything like this before but I have to put my health first. I feel his reaction is potentially jeopardising my health. ☹️

All the very best with your surgery hope it goes well and can bring you relief with your symptoms. Endo is truly awful. xoxo

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🙆🏾🥊🙏🏾

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Complain to your local health board. I had to when a consultant said he couldn’t feel the golf ball size lump in my stomach that everyone else (friends/family) could and ultrasound women said she didn’t think endo and ‘unremarkable’. Kicked up to nhs board and got a different consultant who acknowledged something wrong (still nothing happened by Lanarkshire but contacted my original endo surgeon who had me in for MRI and op within months with stage 4 endo on ovaries and everywhere else). Really push them to take action

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Unfortunately I have no medical evidence to support my claims ; but I can state there were promises of further investigations and seeing my consultant soon but now they won’t do anything and are happy to leave with these symptoms for 8 months.

Hopefully I will get referred to a colorectal specialist who can run more investigations over my severe symptoms ( which was going to happen till my fertility doctor cancelled the referral to send to endo specialist as he thought I’d see one via the endo specialist haha)

Ultrasound cannot diagnose endo 🤦🏽‍♀️

Thank you I will be 👍 xoxo

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I am so sorry to hear you’re going through this.

I feel like I was ignored as well, and not taken seriously. Under the NHS you’re supposed to have treatment started within a certain timeframe and I had well passed that time frame. I was getting my consultants receptionist to constantly email him to see if he can give me an earlier date as I was in and out of a and e. No was doing anything. I even contacted PALs and was told that there was a bed crisis and they couldn’t do anything either. I got so frustrated and decided to go private. I was suffering so much as it is, ontop of that the lack of support just emotionally made it so much worse. I hope you get things sorted soon x

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I’m sorry to hear your experience how awful; why they not refer you privately when there was a bed issue?! That’s what they are supposed to do 🤨 sorry you had to go private.

The nurse practitioner was horrified and said it “ ridiculous “ her own words. And I’m seeing my GP Tuesday.

I am thinking of asking of requesting antidepressants because this stress is making me so emotionally worn out; they don’t get what their actions can do 😪 xoxo

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If your gp is good hopefully he/she can do something for you. My gp left, so every time I went in I was seeing different doctors each time and given morphine and tramadol to take back with me. My symptoms were worsening everyday, so the best decision I made was to go private. I feel awful for you! I honestly understand the stress. Speak to your gp and see what he or she can recommend x

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I.m so sorry over the lack of support im discussed as sounds so serious and distressing and painful and why don't u go to a and e and ur hospital tell them what's going on and that ur not getting any support they will help I'm sore of it and find you the right place to be seen I find they care better some time

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I’m very tempted but I will give my GP the opportunity to put this right. And if no good response then might have to consider 111.

I was shocked I could be so dismissed without even being seen 😢

Thank you. xoxo

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GPS are just as bad I promise u will get seen better that way as my gp was just as bad but had more help of hospital hope u get some answer soon feel so sorry for u as sound so bad xx

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At least I can then tell 111 no one is doing anything 👍 I have then explored every possible route xoxo

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I really recon you do this I carnt go on like this and juts tell them u have trued ever rut but getting now where big hugs x

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