Confused.. Sorry that this is so long and... - Endometriosis UK

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Confused.. Sorry that this is so long and may seem like it's about stomach problems but please keep reading I need your opinions.

Jess_storeyy profile image
10 Replies

I am 15 years old and have suffered from stomach problems for pretty much all of my life, every doctor kept telling me it was IBS but none of the medication I was given helped. I have recently been diagnosed with proctitis (a form of colitis). I'd said in the past 24 months my stomach problems have been a lot worse. By worse I mean I haven't been able to leave the house due to pain and the fact I have to constantly go to the toilet to empty my bowels (up to 15 times a day) which is not do able in school and in public places, because I do go to the toilet so often I don't tend to keep food in my system so I am skinny and when I have a major flare up tends to be when I am on my period or when I ovulate I become unhealthy skinny. Going to the toilet often is embarrassing especially in school so I stopped eating (stupid decision I know) but my main focus was getting in to school and not missing classes then I realised that I shouldn't be avoiding the problem by not eating but see if I could fix it by this point my physical and mental state was ruined I was so weak I couldn't function; through all this I was still in a lot of pain so I was rushed for an emergency colonoscopy and biopsy that's when I was diagnosed with proctitis I started steroids to see it they helped but they unfortunately made me worse. I started my period 3 years ago gradually my periods have got worse I now struggle with heavy and extremely painful periods to the extent that I am sick with the pain and I am not able to leave my bed this is where I need someones opinion. I defiantly do have proctitis but I am questioning whether I have endometriosis aswell because some of the symptoms I experience aren't proctitis symptoms. The pain I experience is stabbing pains from my bowel, ovaries over to my appendix and aching, this keeps me up on a night and I often wake up crying. The pain tends to get worse when my bladder fills up and when I empty my bladder I get pain in my ovary aswell. I am constantly tired, I bloat from the bottom of my belly button to my pelvic bone and get bubbling, pain in my back sometimes pain in my groins and hips which doesn't make sense if I only had proctitis. I have asked doctors if I could have endometriosis and one told me no but I could be pregnant and forced me to take a pregnancy test obviously came back negative, the other told me no but I could get diagnosed with it in a few years which makes me so confused. I apologise this is long but I am so fed up with being ill, I can't live life I'm just surviving and I hate it I have so many aspirations that I want to fulfil but I'm just stuck on my settee in pain and not able to eat. All my friends are achieving and doing normal teenage things and I can't which makes me so sad I'm not myself anymore all I want is to be able to function properly and for someone to say I will be fine and I will be able to be normal and get back to school to do well in my GCSE's next year and get a job that I love.

Sorry that this is so long but if anyone can help me in any way shape or form it would mean a lot even if you can't and took the time to read this thank you :)

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Jess_storeyy
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10 Replies

Yes, it could be endo, and the fact that a GP said it wasn't means nothing. I was told it wasn't, that my symptoms were wrong, and I am stage 4. The GP dismissed endo and told me it was IBS and that was basically the extent of his interest.

Can you find out if your GP surgery has a doctor with a special interest in female health? That might be a good place to start. Unfortunately trying to get a GP to even consider endometriosis can be really difficult :/ but it's vital to keep trying. You need a referral to a gynaecologist and you are entitled to one.

Jess_storeyy profile image
Jess_storeyy

Thank you so much for your advice I will look into getting further appointments and I will definitely see if there is a specialist in female health.

sarahgregory profile image
sarahgregory

Hi, it does sound like there is more going on than proctitis alone. You need to keep perservering to find an answer. Look for a lady on here called Lindle as she is full of knowledge on endo and could maybe help you. She has many posts about how to get a referral to a bsge centre (endometriosis specialist centre).

Hope you get something sorted. All the very best X

Jess_storeyy profile image
Jess_storeyy in reply to sarahgregory

Thank you very much I will have a look now to see if I can find her x

Booboo08 profile image
Booboo08

Ask your GP. NO beg your GP send you for a ultrasound to see if you have cysts on ovary. Or a MRI scan to look for endo.

Sounds like its endo. That much pain on period is not normal.

Can you take things to bung you up and stop you having the runs to help u get through exams?

Jess_storeyy profile image
Jess_storeyy in reply to Booboo08

I am definitely going to push to get a referral and just take it from there. I have tried to take medication to bung me up but it made the pains worse so the consultant told me not to take it anymore.

KatyAyesha profile image
KatyAyesha

Sorry to hear you are having a rough time,definitely sounds like endometriosis.I would go back to the doctors and demand a referral to a gynaecologist.It shouldn't matter how old you are you shouldn't have to suffer. It has taken me 6 months from initial pain to having my first laproscopy and I have been diagnosed with endometriosis so I have been very lucky.Get your parents or someone you trust to go to the doctors with you to offer support and back you up with your pains that's what I did and I am 28! Please do not stop trying for a referral you will get there.Good luck xx

Jess_storeyy profile image
Jess_storeyy in reply to KatyAyesha

My mum has booked me another appointment today so hopefully I will be able to get referred to a gynaecologist, it's so nice to her something positive so thank you :) xx

Loulou24 profile image
Loulou24

Reading your post is like looking at me years ago. For years my GP said I had ulcerative colitis and I had a colonoscopy and surgery. However a new consultant questioned this a couple of years ago and thought it could be linked to the women's side of things. I had another colonoscopy and smaples taken for evidence. This then kick started things for the women's side. I also switched GPs who were more understanding and last year I finally had a laproscopy which found endo. Please definitely push your GP to refer you to an endo specialist. It has really helped my quality of life and answered some questions I had about the pain and constant need for the toilet. I found buscapan, and other similar medication never helped my supposed colitis. Now I don't take them at all and I don't need the toilet half as much as I used to when I was at school and at my previous job. I hope it all turns out well for you. x

Jess_storeyy profile image
Jess_storeyy in reply to Loulou24

I have an appointment to see my GP to definitely question if it could be linked to the women's side of things. It's lovely to hear a positive thing about it as I am sort of losing hope so thank you x

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