Very dissatisfied with help

[louisepercy2000]

Hi guys, I have recently been posting about my ultrasound appointment, symptoms and also what I have been doing such as back and forth from a&e, the doctors and also phone calls to 111. I have only recently been having excruciating back pain (both sides) severe pains in my stomach below my belly botton and sides.

I went to the hospital today and was seen to. The nurse felt around etc I then told him I have been bed bound for 2 weeks and have been sleeping abnormal amounts and yet I am still tired. I fainted this morning- thankfully my mum caught me before I hit the ground (hard flooring in the kitchen) the doctors didn't even do anything about it and just said it's understandable due to the pain I am experiencing. They then said they couldn't partake in blood tests for me because my doctor / GP practice would have to do it for me so they can track the progress. I then went to the doctors later on after being sent home from the hospital, then the doctor then told me to get blood tests done at the hospital!!! The same one I got sent home from!?? I don't understand. I was crying my eyes out thinking there is definitely something wrong with me and no one is doing anything! I've been given codeine and more mefenamic acid 500mg so I'm going to see how this goes for the pain but then I don't know what to do because I don't want to go back to my doctor because I know he will do nothing because he was the one who said it was NORMAL - 3 periods in a month normal??

I'm scared. Nervous and it's not the quality of life a 17 year old who has college and is normally fit and well needs! I feel like giving up I know there is something wrong but I don't know how to get that across.

How do I come across to my GP to refer me to a gynaecologist? Xxx

Louise X

[Hidden]

Hi Louise,

All I can say is that they follow protocols and if you don't fit in the box, they don't know! And I'm saying this with the utmost respect as I know the pressure they are under and miscommunication between clinics and hospitals (I'm a medical writer, I write educational courses for them on disease awareness and parient management).

I found that if I speak to them in their language, I can get through them. So I would suggest doing your research (from proper sites like NHS, medscape, patient.info, NICE) write it down (if you're like me you're bound to get emotional about it), and go talk to your gp (other gp from your clinic?) and say first that you understand the pressure they are under but you need to be on top of your own health and your concerns are that you might not be heard or taken seriously because of your age. Then tell them about your physical concerns (pain, period etc), and read the info you found on respectful sites (never mention Google!). Do not let them talk over you and continue to speak up your mind, they have to do something about it (if they have a heart and a reasonable mind).

I know it's easier said than done, but judging by the quality you have expressed yourself in your message, I have full confidence you can do it 💪💪💪

Good luck

[njcook175]

Hi, I believe I've messaged on your other post and think we are at the same stages. At 17 your going to find that you will be fobbed of quite a lot, this is not acceptable. For years I was told it was just my periods regulating and they would improve as I got older. Then I was told they'd get better after I'd had children. Well now I have 2 children and I'm 27 and the pains worse than ever. I finally feel that as I'm older I'm being taken seriously and this is unacceptable.

Please keep pushing your gp, list all your symptoms and concerns. If they don't listen ask for a second opinion, your will within your rights to ask for another doctor if you feel your not being taken seriously.

Also push for your ultrasound, I'm sure you were referred either before or around the same time as me ( I was referred 22/5) and I received a phone call today and my appointment for an ultrasound is tomorrow.

Women know their own bodies. All I can say is please keep pushing. And good luck hunni x

[louisepercy2000 in reply to njcook175]

Yes I remember! I collapsed the other day due to the pain and when I get back pain it's like two inflated balloons and there's so much pressure there and also with my cramp I have to sit down no matter where I am. I had to sit down in the middle of the street yesterday I felt so embarrassed.

My Doctor yesterday told me it's my periods and hormones having a bit carry on and it's due to my pill I am on too. I had the pill changed nearly 6 months ago and it's only just starting to effect me (April) I know for a fact it is not my periods because I've always had bad period cramping however not this bad.

My ultrasound is on the 6th of July and if they were to find nothing which I suspect they might- they're going to tell me basically to stop wasting there time!!!

I'm not saying I have Endometriosis but a doctor suspected I may have it due to the pains I am getting. If they cannot find anything on the ultrasound I want to be referred to a Gynaecologist! I have been bed bound for 2 weeks and crying so much with the pain. My family doctor does NOT take my symptoms seriously and it wasn't even him who had made me the appointment for the ultrasound it was a different doctor I had seen.

Thank you so much for your reply. I feel so vulnerable because of my age😭 and thank you xxx good luck for your ultrasound and keep me posted xx

[njcook175 in reply to louisepercy2000]

Thanks, I've been told that once I've had my ultrasound to ring back to my docs so they can do a refferal to the gynae whilst I wait for my ultrasound results. Maybe you can ask your doctor to do this. Please don't let them fob you off, if nothing is found on the ultrasound then say you would like a referral to gynae. If they ask why just tell them that you have heard that endo doesn't show on ultrasounds and you'd like to be seen by a professional. Your doctor may not like it but sometime you have to be firm especially when it comes to your health.

I understand where your coming from with feeling vulnerable at 17, I couldn't imagine doing what I'm doing now at your age, I've gone over 10 years with agony because I was too scared to demand something be done. I've seen ladies on here that have been diagnosed in their teens so it can be done. We're all here to help push you in the nicest way 😊😊 I wish someone would have pushed me to sort it years ago. Xx

[CE_88_14]

Just go and demand a referral. I don't think they can refuse you. It might take some time depending on waiting lists but just fight for it and demand what you want. xx

[louisepercy2000 in reply to CE_88_14]

I only just went to the doctors yesterday and my dr intimidates me a little ☹️ I don't know what to do because he might just say to get on with it because it's my periods when I know five well it's not!!! X

[CE_88_14 in reply to louisepercy2000]

Can you not see another doctor? You definitely need to push don't let your doctor intimidate you they are there to help and in the long run if they don't help you now it will only get worse. Ask for a diagnostic laparoscopy. Painkillers should stop the pain but it doesn't stop the damage internally it just masks the symptoms xx

[louisepercy2000 in reply to CE_88_14]

Is another doctor allowed to refer me? I thought it had to be my regular doctor x

[CE_88_14 in reply to louisepercy2000]

No any doctor can refer you they should just be able to look through your notes and see what the issue is and then you can ask for the referral x

[louisepercy2000 in reply to CE_88_14]

I will ring up first thing tomorrow to see if a different doctor is able to see me and refer me xx

[CE_88_14 in reply to louisepercy2000]

Good and fight for it wishing you luck xx

[lainey37]

Oh hunny, phone appointment with the nurse and arrange blood tests, tell them hospital wants them checked and a referal to gynae

[louisepercy2000 in reply to lainey37]

I went for blood tests this morning and had to stay off college! I'm going to see what the doctor says about the blood tests then ask to be referred. Thank you for your reply!!!❤️

[lainey37 in reply to louisepercy2000]

Bless hunny still ask for gynae referal, Periods should not be frequent and be in pain that you collapse xxx

[catinsocksagain]

Hi hun, try a different Dr. I have suffered with endo for 15 years (like you, my pain started at a young age (I was 15) and I was constantly told this was normal by my family, the Dr etc). After forcing myself through vet school (a nightmare with the constant pain and fatigue - looking back I don't know how I did it, but us girls are amazing!) and attempting to hold down a job, I finally bumped into a women at the unemployment centre who had been through the exact same thing, and recommended I see her Dr (quite a distance form my house) - it was the best thing I ever did! Shop around, make sure you type up all your symptoms (and roughly when they occur in the month) any bowel and bladder signs etc and bring this along to the Dr - this makes a huge difference to how the Dr will treat you, believe it or not!

Keep fighting, because debilitating pain at ANY age is not normal (also I find some female Drs tend to be more understanding than the men - not all the time, but most of it, so maybe ask for a women Dr over the phone when booking an apt).

Best of luck

[louisepercy2000 in reply to catinsocksagain]

I managed to get an appointment yesterday with a female doctor who done an internal examination and swobs and said everything felt normal however she's just going to have to make sure it's no infections which I understand but I've been with my boyfriend now for over 2 years and we are both fine. She's sending me my results on Friday for everything including a pregnancy test too. I feel like she was more understanding than my regular doctor who is a man, I was saying to her how fed up I am with being bed bound when I do have my period however I am now off my period and have been for just about a week and the pains are still there!!! I have been being sick, fainting, been being dizzy, my back pains are horrendous and my cramps are disgusting as well as headaches and leg pains to the point I can't stand!!! I've been off college and work with the pain but the doctors I have seen don't seem to care about that?

Thank you for your reply!! I appreciate it so much. Xxxx

[catinsocksagain in reply to louisepercy2000]

Happy it helped! I pray you don't end up in pain every day like I am (even after the Sx), but the periods are always the worst. Will she give you something stronger, at least for the periods?

I find the female Drs in general are a lot kinder (all the men just said 'if the pill didn't work, bad luck' or 'lets try some antidepressants!" (somehow I don't think that will help...))

Best of luck- I hope everything works out for you

[louisepercy2000 in reply to catinsocksagain]

I've ran out of Mefenamic acid and I don't want to go back because I've already been 4 times already same with A&E. I feel like the mefenamic acid isn't working so I don't know what to ask for. I have codeine by that doesn't work when I do get pains ☹️ x

[Nickimidge in reply to louisepercy2000]

I found mefenamic acid as much use as a chocolate fire guard where pain relief is concerned! I was given it by one GP and my actual family GP told me not to take at as its not much better than ibropren!!!!!

[louisepercy2000 in reply to Nickimidge]

Yeah the doctor at the hospital said mefenamic acid is in the same group as Ibuprofen etc. He increased my dose from 250mg to 500mg and nothing's worked. Another doctor said wait for them to start working and to give them a chance to work but I've got none left because of how many I have taken! I seriously need this Ultrasound scan to hurry up so I can move forward xx

[Nickimidge in reply to louisepercy2000]

Fingers crosed for you hun! How long have you been waiting for your ultrasound?x

[louisepercy2000 in reply to Nickimidge]

Been waiting around 4/5 weeks xx

[catinsocksagain in reply to louisepercy2000]

Go back and talk with your Dr (the helpful one) -really! No NSAIDs ever worked for me (inc high dose mefanemic acid). Over the counter codiene also never worked for me, but about 9 years ago prescription (60mg) codine did.- now I use this alongside fast acting Tramadol 100-150mg on an as-needs basis. Though I'm still in pain through the meds, and cannot go to work with a period or when the pain is crippling, I do find the Tramadol much more effective for visceral (ie organ) pain than the codine or NSAIDs.

Also Mefanemic acid gave me terrible ulcers and bleeding form the bowels eventually (but I did use it multiple times every day for 4 months and it did not help a bit!).

Studies also show that while NSAIDs should in theory be the best for endo, they rarely work and stronger meds are almost always required.

Go back and be honest with your Dr - you are suffering now and it's greatly impacting your quality of life. You have a right to live with at least tolerable pain (I would love to say 'pain free' but this has never been a reality for me, and I guess people do live with chronic painful conditions every day, but it doesn't make your pain any less significant!)

Best of luck