Could i get a little help please?

I am 33 years old and have always suffered with painful periods since I started them when I was 13 years old. I have been on and off the pill over about 15 years as the last time I was on it I had extreme anxiety to the point I couldn't leave the house. I have also suffered with stomach cramps and constant diarrhea which my doctor said was probably ibs but didn't give me anything for it nor wanted to investigate to see if it actually was ibs. I also started to get intense pain in my lower back which the doctor said was probably from falling down the stairs over 10 years ago. For a few years I gritted my teeth and tried to ignore the back pain and I kinda got used to it until just before Xmas when it became the worst pain have ever felt in my life. I had to phone my mum to get me out of bed and she took one look at me and said she was phoning to get the doctor out to see me. Well they were too busy and was told to phone the nhs helpline who then said I need to go to the hospital drop in. I was in tears and sat for 45 mins until I could be seen and I had to be helped off the chair as i couldn't walk. The nurse asked me a lot of questions about my pain and periods and then said she couldn't really do anything here at the hospital so I needed to go see my doctor asap. She gave my codeine which did ease the pain slightly and sent me home. I couldn't see the doctor till a few days after Xmas and she said she thought I may of damaged my back when I slipped down the stairs over 10 years ago or I have sciatica and she would send me for an mri scan.

Well here I am end of May and I am still waiting for my scan. My period is due in a day or two and my back pain is so bad I can't actually move to get out of bed :( The pain is in my lower back and starts near my period and ovulation and I feel pressure like something is crushing something and I get a shooting pain down my right bum cheek and down my leg. When I actually do start my period I get cramp in my stomach and feel like something is trying to burst out and my periods are so heavy I can go through a box of tampons in one day and I sometimes throw up. I feel like I am not being listened to and my doctor just thinks I hurt my back from slipping down the stairs. My nurse has told me that my periods sound like what every other woman has and as a woman I just need to put up with it. I am here in tears in bed and I just don't know what to do :( Does anyone think I could have endometriosis? I am trying to get through to my doctors to see if I am still being sent for an mri as i have had no appointment letter or phone call about it. Can an mri even detect endometriosis? Sorry for the long post I just feel like no one will listen or help me.

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  • Hi hun sorry you are suffering you sound like me hun when I get my period. It looks to me that you need to move to a better surgery and get a referral to a gyneachologist. I am sick often but I have gastroparesis which seems to come with endometriosis. I think you need to make then listen to you so many Dr's dismiss endometriosis because they don't understand or believe in the horrendous pain it can put you in. I have m.e cfs gastroparesis endometriosis depression narcolepsy type symptoms and osteoporosis so my legs collapse often.

    Where are you in the world hun ? I have a group in Facebook you might find answers your welcome to join my name is Cheryl newton the group is #meawareness#&#invisible #illnesses #worldwide they are a great bunch also #lupronvictims too which is mainly the meds that gynecologist and Dr's are pushing onto patients .

  • Thank you for replying :) I am in the UK, the north east of England. I would love to join your group thank you. I am sorry you are suffering too. I am still trying to get through to my doctors but the phone just keeps ringing and ringing. Normally I never make a fuss and I just get on with it but I am sick of being told that it's just back ache from a fall and my periods are normal. X

  • What's your name hun I could send you a friend request if you want or you can send me it hun?

  • Oh my goodness, can I relate to what you just wrote. Also 33, also had horrible periods since puberty and have been on and off birth control through my 20's. Stopped at the end and things have steadily gotten worse, but it all culminated towards the end of last year. I've been given a preliminary diagnosis of Endo and am waiting for my referral to a specialist to come through. They put me back on the pill, which does seem to have taken the edge off. (I didn't throw up this month, that's something...) it hasn't stopped the incredible lower back pain though, or the bloating or constant fatigue, etc.

    I have pretty significant scoliosis so I assumed the constant and intense back pain was my spine worsening. I went to an orthopaedic specialist in March and had fresh scans done because I was so worried my curvature has gotten significantly worse.... it hasn't changed. My back is fine, but the pain is real.

    I'm off work today because it's been four straight days of intense back pain and I just feel utterly wiped and couldn't find the strength to push through another day feeling this bad. You are NOT alone or imagining this! It is very real.

    Push back for a referral to someone who knows what they're talking about. This isn't because of something that happened 10 years ago. Don't let their dismissal get you down too much; you aren't imagining this.

    Be strong, hang in there! โค๏ธ

  • It is really common for women with endometriosis to be told it's something else. I think almost everyone on here has been told that at some point, even when our symptoms have been both typical and awful. I was told outright by my GP back in 2014 that I didn't have it because I didn't have the symptoms. When I was finally diagnosed it was extensive and severe. Horrendous period pain is NOT normal and it is not something we should have to put up with. The ignorance surrounding this disease is just astonishing. It's not even like it's rare and something a GP will see once in their career.

    I know this is difficult when you're so ill but please try to see either a different GP or move to a different surgery. Tell them you need a referral to a gynaecologist who deals with endometriosis and if they refuse, ask them to write on your notes that they are refusing and why, and make a formal complaint. You've said your period is due in a few days - if at any point you feel like you can't manage your pain, go to A&E. You don't need to ring NHS direct or go to a walk in clinic - go straight to the A&E department and tell them you need pain relief. There is much better stuff than codeine and they will also be able to give you antisickness to at least try and help you get through this next period. Unfortunately there is no quick solution if it is endo and it's a case of managing it for the most part, but it can be managed and you can have a better quality of life than this. If you still have codeine you can combine it with ibuprofen and paracetamol if it's not enough on it's own, or A&E can give you more than this (diclofenac/oramorph/IV morphine etc) if needed.

    Take care. x.

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