PAAAAIIINNN!

Hello ladies..

Needing a moan and a rant I'm sorry!

I have suffered with endo for 13 years and was finally diagnosed when I begged my GP to refer me as I was positive my symptoms were endo. I had a lap a year ago which was fabulous for 4 months no pain no swelling nothing... then I had a few episodes of swelling and minor pain.

4 weeks ago I had to be signed off work as the pain I am in is so bad it's made me vomit and I have been bed ridden ever since. It is also the worst pain I've ever experienced.

I am positive the endo is back and my new GP is dragging her feet over getting anything sorted.

I'm taking 8 tramadol a day as well as 8 500mg paracetamol which aren't touching my pain.. my GP says I can't have anything stronger and I gave to wait till the 30th March to see her to get a referal to pain clinic at hospital to get anything else!! I an very close to the end of what I can cope with now and I have to go back to work on Monday as I just can't afford to be off any longer...

Why do the tears come so easily?!

Xx

8 Replies

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  • You poor thing, can't you see a different to, perhaps a more understanding doc would change that referral to a gyne docvor endo specialist, you clearly need to be looked at again, good luck,

  • Seeing any GP at the moment is a nightmare. I asked the go to see me she refused so I went to a and e and they said you need to be referred by gp so had to beg gp to see me... its been horrible!

    Really tempted to try a and e again cos this pain is not right at all!

    Thanks for messaging me tho xx

  • If you can't control the pain go to a & e and refuse to leave until they get it sorted!

    What area do you live in do you have a hospital close to you that had a bsge accredited endo centre near you? As you could refuse to leave until a consultant sees you but it will be easier if they have a consultant that understands endo. Xx

    Good luck. X

    Also just so you know it is your right to choose which consultant or centre you want and your gp cannot refuse you! I got fobbed of for 18 months before I knew this then when I said to my I know my rights and I want to go to the centre of my choice only then did they do this. Xx

  • I'm in Nottingham. . I don't know about bsge!!

    They have blagged me all along this time I've been in bed for 4 weeks and they have refused to see me won't change my meds the sent me for an ultrasound but that's the only decent thing...

    I need to know the right stuff to say and my rights etc to get seen.

    Thanks for taking the time to respond!

  • If you search google put in bsge.org in the search engine click on the link then look for the heading for endo accredited centres there is a list of all of them so you could have a look through and see which one is nearest to you. You can then say to your gp that's where you want to be seen and the consultants name they can't refuse it is your right and your choice. Xx

    Good luck and your welcome. X

  • I second Yazza's post. I had a similar problem, was signed off because I couldn't leave the house etc. Yazza is right: it's your right to choose doctors, hospitals etc. I had to go further afield before i met a doctor who understood and treated me with respect. Are you taking someone with you to your appointments? Take a relative or friend who can tell the doctor how much pain you're in and what they've witnessed you go through. Sometimes that second concerned voice helps get the message across. Keep going honey

  • I know how you feel. I was diagnosed with severe endometroisis when I was 25 after many years of miss diagnosis!!! My first laparoscopy surgery for lazer I was told would take 1 hour. I was in theatre 6 hours. I went on to have more lazer surgery 6 months later when surgeon told me my left ovary and fallopian tube had turned black and needed to be removed at a later date. 3 months later I was in agony again. The gynae consultant said endo could not be back it was too soon. I begged him to do a laparoscopy to check he agreed. I went to theatre but this time I was back on ward within an hour. I felt bad after crying about my pain. Saw surgeon the next day he asked how I felt I told him I didn't feel any better. He said reason I was back on ward so soon was because when he put camera in my abdomen it was so bad it was not safe to proceed so they signed operation sheet to say they had to cancel surgery. I was back on waiting list. 4 months later I had open surgery to remove left ovary & tube and lazer. He said next step would have to be hysterectomy. I had hysterectomy a year later but part of my cervix was left as it was so badly stuck to my bladder they left it rather than damage bladder. I had still yo get smears because of cervix bit left. I was feeling better afterwards but still had some pain. They said it was nerve pain as endometroisis had left such a path of distruction behind it. I was 31 when I had hysterectomy and was doing quite well till I was 40 and I started having bad pain again. Each time I was admitted to surgical ward instead of gynae. I had a hernia repaired 2 years ago at the end of my abdominal scar. The pain began to get worse on both sides of my abdomen but they said it was nothing just scarred tissue. Last year in April I was admitted to surgical ward in different hospital they asked gynae to come see me. Gynae Dr did internal scan and found 3 cysts she referred me to leading endometroisis specialist in Belfast city hospital. I was back in hospital last September and had a MRI scan with dye test done on DEC 27th last year. Waited for result after 6 weeks I asked my GP to chase up result. I got a phone call from gp next day to say I have large mass on left side of abdomen with endometroisis deposits also. I had blood tests done to check if mass was cancer. Thankfully tumor markers came back OK. I saw leading endo specialist 3 weeks ago he is baffled as to how pelvic mass grew given I have nothing left on left side. He said the piece of cervix has to come out also. He said it's only in recent years they have discovered that endo can return as the only way to get rud of it for certain is to remove what it is attached to. He said laser still leaves little seeds behind and use of HRT can start it growing again if it had originally gone past reproductive organs. Mine had gone up to upper most point of my small bowel. The mass I have is growing my pain is horrific. I'm on 20mg morphine patch plus slow release tramadol fast acting tramadol and paracetamol. I was taken into hospital by ambulance on Wed night just past given syringe full of morphine and paracetamol drip as always when my pain gets out of control. I am onon urgent waiting list for major surgery and to come in short notice. The specialist said he wouldn't attempt my surgery on his own and has asked the surgeon that did my first surgeries and hysterectomy to assist him along with a urology surgeon in case when removing cervix piece anything would happen bladder. He reckons surgery will take 6-7 hours and will open me down my abdomen instead of across to give them a better view and access for surgery.

    So anyone that tells you endometroisis cannot return and doesn't cause much pain. Obviously these remarks would only come from someone who has never suffered from this ghastly debilitating disease. So lady's never be brushed off if you ever feel your pain returning. My previous endo surgeon said I was a learning experience for him and his doctors and this new surgeon said I'm a real learning curve for him also. So maybe at least my continued suffering will help!!!! Sorry if my story has shocked anyone but I feel just how serious it can become needs to be made public!!!! Good luck to all you brave ladies battling this horrible disease that does not get enough recognition as to how it effects our lives and our families!!!!

  • Thanks Lis8 will try taking someone.

    Claire1967 that is utterly horrific.. I really hope you manage to get sorted out... definitely need to get our stories out there to help others.

    I had a lot of small patches last time but my pain is one of the cases were less endo is more pain.

    I thought the pain was bad last time but this time round is crazy.

    It also seems to be on my nerves as the pain in lower back and going down my leg too.

    U/S showed thickening to left ovary but nothing to right.. pain is mostly right sided tho including back and leg.

    Have to return to work on Monday because I can't afford more time off plus.. I'm on probation at my job as it's new so guess I will be looking for new job soon too....

    Xx

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