i'l apologise now i have dyslexia and cant spell to save my life and it gets worse when upset.
Im getting really fed up of not being listened to or believed. My gyne decided i didnt have endo any more since id had a hystorectomy 12 years ago plus last overy removed 10 years ago. But they left endo in the pod and around the bowel.
The gyne put me on hrt which made the sypmtons flair up to the stage im in agony all the time. So i stopped taking it. But because no endo showed up on the mri they took, which he turned around and told me shows up between the bowel and womb which of course i dont have any more he's passed me on to the gastroentrologists who i saw today, which was a waste of time.
They were too busy and werent intrested in listening to me or my husband with whats going on. She scanned through my notes and decided my problem is i have cronic pain and the problem with my bowel is that im constapated which i know and the miricle cure is laxatives which ive tried most of. She wants to give me a bowel prep then keep me on docolsate and a laxative prep twice a day. thats going to stop the shear agony which i get when ive eaten and need to go to the bathroom! She turned around and said my bowel must function because i look healthy the size i am. Which is rubbish i dont eat enough to keep a child full! Ive put on 3 stone in 3 months due to taking cerracette!
Shes decided this without doing anything to check why i had a restriction of the bowel which my last gastro guy found. She also decided to put me on a high fibre diet, which i told her ive tried and that when i eat broccolli or any other vegtable that i loved to eat im in agony straight away. To which she replied oh we dont want to punish you!
One of the problems is i lived in scotland until 3 years ago which ive told them but i dont think they've ever requested my notes which is really making me mad because its got all my surgaries in it and what damage the eno has done over the last 24 years. I feel every dr i see think i make it up and that its all in my head. Everytime ive been like this and they've fobbed me off with the pain clinic the endo has been causing havock on all my organs. Last time the operated i was at stage 4 and it was on every organ apart from heart, they were worried it had travelled to my lungs since i had pain there too and got shortness of breath when walking far or going up and down stairs.
Im finding it really hard to cope with all i want is someone to believe that im in constant pain and that the symptoms are the same as i had when they last found endo, ie the pain gets worse as the month goes on, i have pain in my left side which comes in sharp stabbing pains which turn to really bad cramps when i have eaten. I have pain in both sides where my kidneies are located, i need to go to the loo all the time and i get pains running down my legs from my groin. Ive also got ostoprosis from not taking hrt for 10 years as well im only 40 and i have bones of an 80 year old.
I dont know where to turn anymore im sat here in agony with tears running down my face.
Sorry for the rant i didnt knowvwhere else to turn
Jane xx
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jane39
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Really sorry to hear all your difficulties made all the worse by doctors not listening to you. It just baffles me how these people get paid money to do this.
You mention that you have a gynae and that he left in endo on your bowel and pod. Even having the ovaries removed some oestrogens are also produced in smaller amounts by other tissues such as the liver, adrenal glands, and the breasts (according to wikipedia!) Oestrogen is also produced by fat cells. These amounts may be enough to keep endo going if it was left behind. Maybe someone else on the forum could confirm. The progesterone from the cerazette may also be turning into oestrogen.
If your surgeon left in the endo on your bowel and pod, that says to me that he is not experienced in endo and did not have a colorectal surgeon on hand for the op. Accredited endo centres have the advantage of an extended team of specialists depending on where the endo is located.
I would suggest that you go to your GP and tell him/her that you want referral to an accredited endo specialist as the most appropriate specialist to deal with your predicament. You can choose who you want to see on the nhs. Here's a list of accredited centres bsge.org.uk/ec-BSGE-accredi... There are provisional centres here bsge.org.uk/ec-BSGE-provisi...
Just because it didn't show on the MRI doesn't mean endo isn't there. A laparoscopy is the only way to confirm.
I wonder could you get your records yourself from Scotland. You are entitled to your own med records. It might be worth following up yourself.
Hope you find someone who will listen and help you. x
Ive always been fobbed off by drs telling me "ive had a hystorectomy so it cant come back" which ive always had a feeling was wrong. Especialy when the pain shooting down the leg started up again.
I was ment to have seen an endo specialist in england but when i checked to see if his name was on the list of specalists it wasnt. I spoke to my gp and shes told me i have to get intouch with them direct to get a second opinion which is new to me since i had a lovely gp up north.
I will look into getting my records sent to me here
It sounds like you are having a really tough time, I am sorry to hear that. I have fought tooth and nail with doctors. The consultant I had basically told me there was nothing he would do for me and to just live with it. I had bowel trouble and had it removed when I was a kid, ended up in hospital in January with suspected rutured disc and cauda equina which is when the disc presses on the spinal column, it wasnt that, it was five ovarian cysts and Endo they told me. that was when the gynae said he wouldnt operate as he would have to find a colorectal surgeon, and bladder surgeon and it was too much hassle. I went to my gp probably five or six times until he would refer me to someone else! they have to let you have a second opinion. So keep pressing,
Thinking of you and I hope you get the GP to see you are not making it up!! maybe switch GP?
You have the right to proper diagnosis and appropriate treatment. Tell you GP those exact words. And also consider changing GP.
The next option if none of that works depends on finances. If you can afford it you could make a private appointment directly with a specialist of your choice and then switch to nhs. Mine is in London and costs £175. They vary in price.
i hope you get seen by the right team soon. Ive got to go back gp to get new laxatives so i'l ask again to be refered to new gyne.
Thank you Brownlow for the information above, its good to know its upto the gp to get a second opionion set up for me and not for me to phone and try and get it sorted. im also going to speak to my husband about seeing if we can afford a private consultation.
Its good to know theres other ladies out there i can turn to. When i was first diagnosed 24 years ago i thought i was on my own
I suggest you print out those links and take them with you to GP appointment and read directly from them if your GP resists referral.
Your specialist can also refer you on to someone else but that would be unusual when seeking a second opinion. The instances where you would be referred by your specialist to another specialist would really only be because your situation is beyond their skill (and many are too proud to admit that and continue to treat you inexpertly) or your issue is a different discipline / department which is not the case here.
Here's a link about getting health records nhs.uk/chq/pages/1309.aspx?... It only mentions access though so that might mean you have to physically go there and photograph them. Someone else on the forum might know more about this. Failing that, I suggest you type out a letter/report on all you know about your medical history with dates, diagnoses, treatments so the specialist at least has some record.
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and that its all in my head. Everytime ive been like this and they've fobbed me off with the pain clinic the endo has been causing havock on all my organs. Last time the operated i was at stage 4 and it was on every organ apart from heart, they were worried it had travelled to my lungs since i had pain there too and got shortness of breath when walking far or going up and down stairs.
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