I have posted on this forum a few times about the pain/symptoms and treatment from NHS staff I have been experiencing.
About a month ago I had an appointment with a gynaecology consultant and I was told that there is a reason for my pain but as my BMI is too high I cannot be allowed to go for a laparoscopy as I am high risk. The consultant called me big and told me I need to do something about my weight.
I honestly cannot go on with this pain anymore and I can’t go on not knowing the cause of this pain. I am miserable and crying constantly. I have even contemplated causing injury to myself just so that I will be seen and taken seriously by NHS staff.
I have gone off the pill/started a gluten free diet/avoided alcohol in order to try and help with the pain. I have had internal/external scans and multiple blood tests. I have shown my doctor a pain/symptom tracker and a food diary.
What should I do next?
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Ttlaroo
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HiSorry you’re coming up against it, especially at this time of year.
My view on ops is , what if it was an emergency they’d operate then, no choice. I’ve known people who were overweight having ops for other things, and heard of women being told the same thing. To me it’s an excuse and the pill makes women overweight sometimes.
I’ll write to you later with what I’ve done, but it will take you some pushing, here for support though.
I hope you can get some joy out of today, you’ve got this far 🙂
HelloThank you so much for taking the time to respond. I was thinking the same thing... If I needed help like I was in an accident or something would they not help me? xx
I’ve read some of the other responses, all good and hope you’re feeling a bit better about tackling things.
Write all your symptoms and how the pain is effecting you and give it to him to read and go from there. If you want to show him my responses I’m good with that, and my message to him would be ‘covid is not a reason to start throwing in excuses like weight, Zoladex or Prostrap, etc to try and reduce immediate ops, it’s compassion and doing what you need to do to help, plus MRI to see if DIE, but that’s not to say it will show.’
BSGE, just still be careful, it was one of these that did my hysterectomy and completely ignored Endo on bowel and didn’t have a colorectal surgeon when he said there would be. That’s currently with the GMC. (Feel free to show him all of this bit)
The GP can do more to help, they need a huge push and you aren’t going to fall through their many gaps. Tell them what you want.
Bless you, it’s all exhausting isn’t it. I agree with Moon Maiden that they seem to use weight as a bit of excuse sometimes… It sounds like you’re doing all the right things, but you need more support. Do you think you can go back to your GP to discuss different pain relief options? Also, I think it’s important that they know exactly how it’s making you feel, that you are suffering to the point of desperation. To me, that’s a mental health emergency and should be taken extremely seriously. You deserve some relief from this xxxx
HelloThank you so much for taking the time to respond. I think you're right it definitely seemed like an excuse! I have tried contacting my GP who 1) won't see me because I have nothing physical to show them 2)keep giving me the same pain relief even though I said it isn't working. I am worried if I tell them how I am feeling mentally they will flag me up or think I am a risk to myself and I'm worried about my job. xxxx
Hey hope you’re ok. I’m also in the same boat. I’ve just been referred to a pain management team so hopefully they can help. Maybe see if you can do the same? I’ve ordered a tens machine which really helps and take regular mefenamic acid and codeine pain relief wise. Every day is a struggle it’s just horrible ☹️!
HelloThank you so much for your response. I am going to ask to be referred to a pain management team to try and help. I am also taking mefenamic acid and codeine but it doesn't really help! Have you received your machine yet and how are you finding it? I am so sorry you're going through this. It isn't fair xxx
I hope you got through today ok.I think it’s horrendous how we are made to feel and you know they struggle to understand.
Slightly in reverse, but really do understand what you mean about getting help. The only joy I got from GP yesterday was go to A&E, so I did. I told them I wasn’t leaving without some help. I had half a bottle of Oramorph with me as back up. Keep in mind I’m on Amitriptyline, Pregabalin, Paracetamol as well, I’ve tried loads of others and nothing cuts it. I’ve got some slow release morphine capsules. I know the potential dangers but if you’re in pain, less likely of addiction, it’s always potentially there for any of these. Drs are scared to provide suitable help. I’ve contacted GP surgery loads of times in the last couple of years and that’s for referrals left right and centre. I’ve had tests for cancer last year due to weight loss. Last years hysterectomy was near useless as no bowel surgeon so had to look at getting a third as there is no way I’m putting up with this. The Gynae who did last op I’ve reported to GMC, who have taken to next stage but no idea what this means in the long run.
You have a right to decent pain relief, a referral to the pain clinic. You have a right to see a Gynae without being insulted because they are using excuses to reduce op waiting times. If they think you are that overweight what help are they giving? Referral to dietician, probably not.
Whenever you contact GP use the econsult form, it’s in writing and you’ll get a time when they’ll respond by. Use as much as you can on the form. Best not to ask, easier for them to say no. Tell them what you need. Is there a different hospital you can get a referral to? You can get NHS bookable appointments at private hospitals as well when a GP refers. If you get one of those you’ll see the consultant and no risk of registrar.
As far as I’m concerned I’ve paid in enough that I shouldn’t be begging for any of this, but I will just to survive. The amount of tears is ridiculous. Some other reasons for this as well. Once I’m back on my feet I’ll see what I can do to make changes. I need to get there first.
I’ve wittered on sorry, hope it hasn’t come out wrong, trying to explain a fraction of what I’ve done is hard on this. Let me know any questions 🙂
Hi my lovely . I am so sorry to hear your feeling this way . This makes me so angry . I have been exactly we’re you have been and I was insulted about my weight. I managed to get all the weight off but was so embarrassed and ashamed to go back for help . I loved on with the Pain for three years until it became too much . I went back to my doctors and completely broke down . I was referred to the clinic and after the disgusting treatment I had received I was given the option to go private .Luckily for me I got to see the consultant straight away . She mentioned my weight but was a lot kinder . I also suffer with mental health and I have a degree in mental health so I chucked right back at her . Do you make people who need life changing / life saving surgery wait as there big ? Or do you let them die ? This sounds harsh but I was so done with hearing this crap . Anyways cut my story short she was lovely and agreed to it . I am back in April for pre op.
Alot off us are going through the same thing huni . Your not on your own . I know it’s hard and painful but please don’t give up . I’ve probably got a long fight on my hands but I won’t live my life in Pain and suffering , why should you ? Go back and speak to your doctor hun! Your worth it . You deserve to be pain free and happy . Try stay strong hun . Xx
Thank you so much for your kind message. It is so lovely to have support. I am so sorry you have had to go through this... it simply isn't fair!! I have tried to speak to the doctors and they simply will not listen or take me seriously.You are so right that's exactly what I said... if I was in an accident would they not perform surgery?
Sorry my response is so short I am replying quickyxxx
Hi Ttlaroo, I just wanted to reiterate shelley-marie41’s words. We’re all here for you, whether that’s a chat, advice, rant and rave, or a virtual shoulder to cry on. Don’t give up. Keep pushing; keep asking questions until you get the answers you desire. You deserve it. My heart goes out to you. Sending you a huge virtual hug. x
(P.S. Have you had an MRI scan? My friend was unable to have surgery and so she was offered an MRI instead. The scan showed wide spread endo.)
HelloThank you so much for your message and taking the time to respond. You are so lovely! I am so glad this is a safe space to share and discuss. I am overwhelmed by the kindness I have received. Thank you so much. An MRI hasn't been mentioned but it's something that I am going to try and mention on Friday. (Not sure how that is going to go down.)xxx
Hi Ttlaroo I’m just letting you know that I have a bmi of 44 and although at every given opportunity they remind me that I am overweight, not once have I ever been refused surgery or treatment. My advice to you would be to find your nearest bsge centre as they seem to have more compassion than the generic nhs gynaecologists, and they also know more than the generic ones. I have stage 4 endometriosis adenomyosis and frozen pelvis I’m awaiting surgery and as I say I’m classed as morbidly obese. You have to keep pushing and pushing unfortunately, I take zapain 30/500 2 four times daily, naproxen 500mg 2x daily, gabapentin 300mg 3x daily and morphine for breakthrough pain I have had to fight all my life to get anywhere with my journey I’m not sure if you can dm me on here but if you can’t and want to talk you can add me on tiktok if you have it, I’m berthabeartherottweiler on there. We all could do with someone to vent to who knows what we’re going through. X
Hello,Thank you so much your response and sharing your experiences. My BMI is higher than yours. It was the fact she didn't give an alternative just a refusal I couldn't believe it. What is a BSGE centre? I am so sorry you are suffering, bless you. I have repeatedly asked for pain relief and am constantly given the same ones that simply do not work. How do I ask for something else?
Hi Lovely,You are such a tough cookie! I'm really sorry to hear that you've been in so much pain and had to deal with battling just just be heard by your doctors! I have stage 4 endo and adeno and got to the point where I could no longer take it!!! Doctors were just telling me to take one pill after another and telling me to have a hysterectomy! I was in shock at the lack.of empathy and the medical machine that was basically a Google search of what to do next. Anyway, I like you cut out gluten, then dairy, sugar (I have a big sweet tooth) and deep fried foods. I started doing pilates or any pelvic floor exercises would help. Started taking magnesium, fish oil, vit d, evening primrose, zinc and CBD supplements and after 6months I started to feel abit better in myself. I now wake up a little earlier and write a joural and get off everything heavy on my mind. And making the choice to live a life I love by quitting my Corp job with stupidly long hours and starting my own business. This took a couple of years but I feel better in myself and share this all with you in the hope that you may get something from this that you can the on that will make your days a little sweeter and your pain a little less.
Bless you, you are so lovely.Thank you so much for this response and sharing your journey and experiences. This was so insightful and definitely has given me things to think about and hopefully introduce soon! You are so strong and amazing!! xx
Thank you all so much for your kind words and words of support. It honestly means the world and I am so glad this is a safe space to discuss problems and ask for help.
Friday (7th) is my next appointment in the hospital (same consultant unfortunately). I am bringing with me a typed document of changes in pain/mood/weight/hairloss/periods since November. I feel like the consultant is very hard to communicate with and simply does not listen!
Is there anything I should ask for or bring with me to try and help?
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