Endometriosis UK

Advice appreciated plz. Am desperate to know what to try next and what is going on with me :(

Basically after suffering since age 10 ever since I started my periods I finally got diagnosed with endo last year March time after an emergency op/lap. As well as endo there were extensive thick adhesions and a very large peritoneal inclusion cyst. My bowel was stuck to my ovary and uterus. Since then, after trying bcp, then Mirena, which was put in wrong and got embedded in my cervix, the gynae got me on depo provera. Bn on it before over 10 yrs ago for over 2yrs. She gave me the initial 12wks to try for symptom relief and I see her a week Thurs. She said last time if no relief she would suggest pseudo menopause drugs for 6mths but then she didnt know what to suggest. She said it prob isnt just endo causing pain so will 'prob' get me an ultrasound scan this time but may need more surgery. Im a high risk for tumours and shld be scanned every 3mths but havent had one since last op. I am in severe pain pelvis, lower back, groin, left thigh and leg. Started mild blood staining 3days ago that is still there. V painful bowel movements with blood in stool and v painful wees. Morphine is not touching pain. No periods since injection but that is normal for me. I stopped straight away last time. Big tummy. Stiff, drained. Surely i should at least have less pain with d.provera? I dont know what to do next or what to ask for. Im scared bcoz i feel so ill now and i dont look well either. It seems like im running out of options. Hormones make me v mood swingy so worry about 6months of pseudo menopause drugs. Wld hysterectomy hlp? Have no kids and doubt i will ever have sadly. What advice can people give me? Is this just endo or like I reckon its more again? I feel ashamedly desperate and at the end of my tether. My quality of life is poor now.

1 Reply

Hi determinedsurvivor79,

I tried the injection that sends you into menopause two summers ago when I was first diagnosed- I have mixed feelings about it- reason why I disliked it where because of the hot flushes day and night and very severe,couldnt sleep at night, anxiety, mood swings, lost over a stone (which I didn't have to lose), vaginal dryness, zero sex drive! Reasons for liken it... Zero pain( which was wonderful)no periods, could eat whatever I wanted and not gain a pound, no migraines (which tortured me) my acne cleared up! The injection is giving in two doses each giving 3 months-after the six months where up it took my body another four months to return to normal (including pain migraines and acne). I was put back on the pill to help with these symptoms as I wanted to wait another year before I start ivf treatment which I'm hoping to start this year!! The pill help a small bit-but I done some research and found that a lot if woman recommended following a diet- I tried it and it has defo

Worked for me!! Basically anything that has gluten in it is an inflammatory and as endo sufferers our Timmy's are already inflamed so add gluten to the equation is explosive!! Some foods can even stimulate the growth of endo tissue!! Also endo sufferers are usually alcohol intolerant, I've cut it and I'm much better for it of course I do

Have the odd tipple (everything in moderation) :-) changing my diet helped me a lot more with controlling pain than any medicines they where throwing at me! Google endometrosis diet and you will gather a lot of information to easy the pain!! Hope this helps you x


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