Hi all , I am relay struggling with my mind right now in 2019 after a laparoscopy I was diagnosed with serve endo and endo on the bowel which required further investigation and possible surgery. I was referred to see a bowel specialist but unfortunately did not receive any appointments or any correspondence I went back to my GP who referred me to gynaecology at my local hospital , I had an MRI in May2020 which showed I had serve endo. Like most suffers I am in a lot of pain and have problems with my bowel. I am finding it so difficult to go to the bathroom its the most excruciating painful experience. when I need to go I have to go, I don't go out any where with the fear that what would happen if there is no toilet facilities. When I have a period I feel l find it so difficulty to urinate my bladder hurts and having a wee becomes so difficult. I finally got a face to face appointment with my gynaecologist on the 4th Of December2020 and it was so horrible, he was not interested in what I had to say he said I did not have endo ( as I did not develop it until after my second pregnancy which he said is unheard of and that all endo suffers have it from a young age) and suggested that all I need was to be referred to a pain management clinic, he made me feel like I was exaggerating my pain and that it was not real he said he would refer me to bowel specialist and see me again in 6 months. obviously I questioned his judgment and said did the other doctor misdiagnose me I cant even remember his response, and he said I was free to change consultants. I cant begin to explain the impact that this man has had on me I now am questioning my self and am looking for a second opinion from a private consultant which I cant afford but he made me feel like I am going mad. I know what I go through ! my pain is real but to just be fobbed off by him has really made me question the whole system. I don't feel comfortable to go back to this guy and just want to be get a new referral but that means having to start all over gain. I am having so many problems with my bowels some days I cant even stand up.
I am not sure of what I can do I don't have the strength to complain and go through this ordeal again. I just feel so low
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Faithstar
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Hisorry to hear you've had such a crappy time.....I think most of us have had an unhelpful/rude consultant trying to fob us off at some point on our endo journey
Do you have a good GP maybe talk to them otherwise just request a second opinion like you said you have confirmed bowel endo from lap in 2019...... which needs attention as your symptoms are unbearable.
I have confirmed bowel endo waiting on my next op ......I understand how painful and embarrassing this can be...... feel free to private message me I'm always here to talk
Don't let this experience stop you from getting treatment they've no idea the pain and struggles we have
Thank you so much for your kind words, I am trying to find a good private endo specialist for a second opinion hopefully. I feel embarrassed to share my bowel problems with family and friends .
I can confirm endo is possible to develop at most ages, and I am sure there is even a separate category that is the form that develops after pregnancy so it sounds like you got a really judgemental and doctor who was ignoring the facts and focussing on opinion. Is there the chance to change to another doctor who is going to put you first?
Please try not to panic - you have been totally misinformed by this consultant. I wonder what he would say to me after I was diagnosed for the first time at age 51 with no uterus and ovaries, after having a child at age 40 and required around 9 hours of excision surgery at age 55! This person really should be reported but that isn't the main concern right now.
As soon as you were found to have severe endo you should have been referred to a specialist endo centre in tertiary care so have been treated completely wrongly. Where in the UK are you?
I’m in London and with the help of the lovely lady I spoke to from endometriosis support line she advised me where all the specialist endo clinics are . I have since emailed guys and st Thomas and am trying to get an appointment with my GP so I can get a referral letter.
Lindle is right you should be seen by a specialist endometriosis centre. Even if there's a long travel to the nearest centre I'd recommend dealing with that if you can to get better care and treatment. I know its hard but please don't give up, you can be treated for this with the right consultants (endometriosis specialist, urologist and colorectal surgeon).
When you have the time it's worth reporting your experience to PALS at the hospital as this is totally unacceptable and his understanding is incorrect. You don't need to do this yourself. Friends and family can contact them on your behalf.
If theres and endometriosis specialist in the hospital you saw the "gynaecologist" in you can ask PALS to switch you to them. Its quite easy if you explain you have severe endometriosis and you've been seen by a non specialist. You can also explain what he said. They should help you.
I have had bowel endometriosis so understand how awful the pain is, has your GP offered a good painkiller? FYI Co codomal isn't a good option and not advisable for women with endo but especially those with bowel endometriosis. Acupuncture and Chinese medicine helped reduce my symptoms so feel free to contact me via DM if you want to know more.
Next time you have a call with a GP or consultant have someone with you that is assertive and can fight on your behalf.
I hope you are referred to a specialist soon for proper advice and treatment.
Thank you for your encouragement, I am going to try to get a referral to specialist endo clinic the hospital I went to does not have a specialist endo clinic or consultants. I have tried various pain killers they all work well to start off with but then there strength just seems to ware off. I have a merina coil which was supposed to help with the pain but again no luck instead it makes me feel more depressed and I get really bad head aches with it. I am going to get this removed. I am thinking of looking in to homeopathy for pain relief . I was unable to take anyone with me to my appointment due to COVID. I really hope I can get a refferal to a specialist clinic
You aren’t going mad and he’s spouting rubbish. I’ve had bad periods a long time, but only diagnosed endo last year, 51, I haven’t had children, but I don’t really think it makes a difference. I’d managed until fibroids joined in, or could be vice versa, who knows. Maybe early Christmas present to see a nice gynae who will help. They can add you to NHS list for treatment if they want to.
I didn’t get a GP referral to see a gynae, I’d had one which ended up at Urogynaecology, which wasn’t right to me and cancelled it. I did give them the letter explaining about the diagnosis, just a pity I couldn’t put cream and cherry on top 😆
I have had endometriosis was diagnosed in 2009 and had it laproscopy. I got a face to face appointment in July as its comeback and they was asking me who diagnosed me and what I had done I said it should be in notes they took photography's. I don't know what is going off with NHS but there lying or trying to make out we haven't had or got the condition. When have been under hospital for 10 year I mean all they had to do was read notes it's come back and is worse now than ever they left me a year and half with a cyst in my Overie until it burst during lockdown and sent me home with no treatment. It's on my bowel overies and lower back.
Hi I'm so sorry to hear what has happened to you . You are right there is something definitely going on with the NHS, My consultant did not have any of my old notes when I asked him why he basically said there is new IT system in place and as my old notes were paper based, they have not been transferred on new system. he asked me to chase my notes and get hold of images from my previous laparoscopy. How are you now do you have any future appointments. As everyone is advising me get your self referred to a specialist endo clinic. all the best 🤗
Yes, speak with PALS ( Patient Advice and Liaison Service) and if necessary Complaints. You can choose the NHS Consultant you see, it is Patients Choice a charter set up by the Government and Department of Health. It takes some work but its a tool you can use, xx
I have this problem! You have the right to ask for another consultant sometimes you only get a junior so you can ask for someone more senior. Honestly best thing i ever did was put a complaint in. I also wrote to my local MP who also chased and investigated things. I believe PALs are really good thats my next step if I get nowhere.
Also to let you know your not out of your mind. I was in pain with periods but could manage them through stronger pain relief however my endo didn't really kick in until I had my little one! Omg my hormones were a mess and still are. Its not nice when you experience a so called professional making out your not in the pain your explaining.
Honestly though if you can ask for someone else its scary but you ll feel much more at ease when you see someone else. Its definitely not in your head and the pain from this horrible disease is not nice its so underestimated.
Another thing you could keep is a video diary or pictures and send them to the secretary
I hope you manage to get to see a consultant that understands you
I am constantly in and out or ringing hospital unfortunately you seem to be ignored otherwise.
So typical ! This is going to happen as the NHS is under huge strain ! Just see your gp again and ask to see another consultant as you don’t agree with him based on your pain and your previous diagnose ! I would go in strong , take a strong friend with you for morale support and say you want another consultant , I did exactly that and saw a new consultant and he imedialty requested an MRI for me , is your gp on your side ? If so just ask them and say this is not acceptable, your going to have to fight for this ! Where are you based ?
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