diagnosed after 6 months of 'possible problems' at 27 yrs of age

I was diagnosed with endo in jan this yr after having 6 months of treatment for various possibles , firstly being a suspected ruptured apendix, then 2 weeks later was admitted for clots in my kidney and bladder . i was on the pill at the time and been on it since i was 13 - yes i was young but i was bleeding for most of the month and only having a few days break ( surely alarm bells should be ringing when that happens as i had started my periods at the age of 10)

my consultant finally agreed to surgery which took place in dec but made me come off the pill that day and wowza ive never felt so ill in my life , due to him still not knowing what he was going to find (in relation to the kidney probs as he was checking everything ) i signed for a kidney removal and a full hystorectomi as a precaution , thankfully that wasnt needed . I have just finished a 6 month cycle of gnrh injections which worked really quickly until 5 months into them when i started bleeding both from my kidneys and uterus but he has no idea why . im now awaiting my next appointment with him in a months time and the dreaded monthly , the pain has already begun and i feel like the tops of my legs are on fire - anyone else have this symptom of a burning sensation in your legs / pelvic area?

7 Replies

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  • yes. (re: burning) and welcome, lovely xx

  • Yes, I too have burning and ache legs mostly in my pelvic area x

  • My endo pain is completely localised to my left leg and hip, it's only at the worst of my actual period that I actually get abdo pain. Sounds like you've had a rough time. :(

  • Firstly welcome aboard the Endo train! Sorry to say its not a fun ride but we'lre all passengers and we are all be here to provide help when you are at your lowest or just when you need support.

    I have had problems since I was 15, at 17 I was told I had PCOS but never felt that this was what I had. The next 17 years (yep that's right), I've had pain in my abdo, legs and hips and back, getting worse year on year. Finally in January 2011 I had a massive cyst that almost ruptured and was admitted to hopital. Eventually I had some strong antibiotic treatment and I was given a lap 7 months later as the symptoms then got much worse to the point where I couldn't walk, let alone exercise. Anyway I had the lap, and sadly that operation very nearly made me lose my life. I lost 8 pints of blood as my epigastic vein was cut (this does happen) and I was left fighting for my life. I had a 6 litre (about 12 pints) of blood transfused during a second life saving op, 2 hours later. The next day the consultant came to see me and said what I wanted to hear....after years of being told I was making it all up and it was all in my head....he confirmed that it was the worst case of endo he'd seen in his career. A lot of adhesions and removal were required, hence the complications I sustained and I also had a problem with the anaesethic as I was given half a dose as they thought I'd been in and out but when they realised it was a lot worse, I then had a triple dose as I needed it removed there and then. I then had months of infections and received 8 courses of antibiotics in less than 6 months. I have since had another lap in March this year and have had some more removed along with adhesions. I am better but not cured. The leg pain persists, together with 2 weeks of period pains before my period actually comes.

    I really hope you get yourself sorted. There is nothing worse than being in pain and having no answers for it. It sounds like you've been through an awful time of it.

    I will say a prayer for you this evening and hope that you get your answers, are treated quickly and that you are able to resume some kind of normality in life.

    Look after yourself.

    xxxx

  • thanks everyone for the comments its good to know im not on my own i was handed a leaflet and 'told' to read it by my regular nurse.

    various drs have always taken my answer , when on asking me how my periods were that to me they were normal , but to me it was until i saw my gyne fir the first time . ive suffered from ibs since a young age, even though i do have this , the pain i get every month regardless if i have a bleed or not , is from endo and not ibs as previously confirmed from various tests . i got quite a harsh ticking off by my gyne as he states bowel issues in women can be caused by endo and different stomach issues can mask endo symptoms, does anyone else have this issue , this is one of my main symptoms and it stops me in my tracks sometimes as my pelvic area goes into spasm from my bowel being squashed from the swelling in my uterus . does anyone have any suggestions to ease this as i refuse to take tramadol ( the gyne's normal choice of painkiller ) unless i really really need to and sadly the normal painkillers paracetamol etc just arnt strong enough.

  • Hi there, I just read your post and really relate and wondered how you were getting on? I'm 28 and had chronic pelvic pain for nearly a year, along with no periods for 2 years. To cut a long story short in the last month things have got worse and I have been having the worst stabbing/pulling pains in my lower pelvic area and hips with shooting pains down my legs. Diagnosed with PCOS in the autumn but keep being told this wouldn't cause the pain.

    What can be done to stop the awful hip/leg pain?

    Hope you're feeling ok

    K x

  • Hi,

    Re the IBS problems, have you tried cutting out wheat/dairy/caffeine etc? I find my symptoms are way way worse when I eat wheat.

    As for the period pain, I never wanted kids, so I had an endometrial ablation done last year and it has completely cured the period pain and almost stopped the bleeding. Not for everyone though as you are unable to have children afterwards but for me it was a total godsend.

    For pain, I find a mix of paracetamol (1 g) and ibuprofen ( 400 to 600 mg) can help, but often resort to codeine before bed as well if it is really bad. When my periods were bad I used a mix of Tranexemic acid and Mefanamic acid (from the doc, but I think you can get over the counter now), and they were incredibly effective but hard on my stomach. Never take them without food!

    Good luck,

    Hugs

    Nicky

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