NEED HELP!!! need to know what is available for endometriosis?

Hi everyone....... I was diagnosed with endometriosis early this year just a few months after having my 4th child .I was in and out of hospital for 13 weeks near the end of my pregnancy with the same pain I have now and them having to stop my contraction as I went into labour early . As I had a previos c. Section I tried to give birth naturaly but was not happeng for me as i had a 38 hour labour so they had to do another c.section since then my endometriosis has just progressed and becoming very painfull i suffered with heavy bleeding and prolonged periods for upto 3 weeks at a time and had a few cysts on each of my ovarys which did go in time so I chose to have the marina in and that did not work for me as I bleed for 3 months everyday and still very heavy some days i would just spot but that was on the odd occasions and I was still in a lot of the gyne put me on norethisterone 2 a day and that did not help so had to go on 3 a day after going back to the docs that still did not help after taking them for another 2 weeks so I was by this time not a happy women my hormones were all over the place I was very snappy at my family and loved ones doctors were not doing anything so I desided to take it out myself . The bleeding stopped a few days after taking it out iv had a small period since then the codine no longer works for me so doctor put me on tramadol. Which some days when the pain is strong they don't even work I'm fed up of not sleeping feeling sick and been in pain I don't enjoy intercourse with my boyfriend as it hurts to much ,my social life has left me staying in all the time my pain is mainly on my right side mainly near my groin and my lower back the pain just burns constanly, I am 29 years old and I miss been so active.endometriosis runs in my family my mum has it and my sister I'm worried I will pass it on to my 2 girls.does anyone know if you can ask for a hysterectomy as iv had my kids now and am glad I have as there are people out there who can't have children with endometriosis my sister is one of them . Many thanks :)

8 Replies

  • i too was diagnosed this yr after having my 2nd child thru c section, i was having really bad pelvic pains in the middle of m,y cycle and was suffering really bad stomach probs so docs thought i had ibs however on examination with consultant he said i had endo, my doc had given me a course of noristerone too but it made me ill so hosp put me on 3 month course of prostap whihc puts u into a min menopause the side effects arent too good but the relief from the endo was fantastic, i was then taken in for a laparosocopy in aug where they found the endo buried in my c section scar and im now awating to see consulatnt again next wk to see if they are going to perform a hysterectomy as im only 33 and cant give me the prostap for longer than a yr

  • hi i too was diagnosed with ibs when i was 17 after having my son .iv had pain now for the last 7 years i had a laparoscopy back in 2006 where they put a marina in at same time lasted me 18 months then it fell out they told me i had endo but it was not active . i would like them to do a nother laparocopy to find out whats going on in there and where all the pain is steaming from iv had problems with my bowels for so long i dont get the pain of ibs so much any more its more when i need the toilet and im bad with endo pain that i suffer more i do need to mention this to my gyne when i go back on 19th of dec ..... i am aware that hysterectomys do no cure the endo!!! and so many people have said that it just clings to you like a sister was on the injection and iv see the flushes she has and she said it was great for the pain . im just so confused at the moment.thankyou for your time to reply to my post i just try to take one day at a time as i have more bad days than good .

  • Oh i must say that i had a total abdominal hysterectomy in April this yr after 3 yrs of countless agony , cysts on one ovary then the other and finally a 10 cm cyst which burst!

    I had been on Zoldex , prostap , codeine and Tramadol as well as countless other pills ! The hysterectomy does not cure Endemetriosis as i have recently found out as my pains are back with avengance ! The doctor told me the pains are all in my head !!!!!!!!!

    I'm really not sure now where to go with all this but my life and every day to day things are a constant battle ! I am so deflated with it all xxx

  • im so sorry to hear that your cyst burst,iv been in agony with them where i have been doubled over with the pain and not been able to move ,lift my son up to feed him or even for a cuddle it was that bad.yeah a lot of people have said that about hysterectomys im also sorry to hear that your pain is back with avengance!! i understand where your coming from my mum is in the same situation as well as fighting cancer of the womb when she was only 27 years old she had 11 major opperations including a mum is now on so many tablets including morphine every day !!! her bowel has prolapsed and there is nothing they can do now. i just try to take each day as it comes most days tho i just feel rubbish im very snappy to everyone in my house and there is 7 of us . thank you for taking the time to writing back to me xxx

  • Hi.I'm not not sure yet if I have endo as I've got my lap on the 22nd. Just in time for. Christmas! But when they said it might be I looked up pain relief and Ponstan (mefanemic acid) was mentioned so I asked GP to prescribe it and it does ease pain. I used it for period pains when I was in my 20s after a nurse I lived with at uni suggested it. Was loads better than codeine. Never had Tramadol, but ease with which they prescribed it to me after an A&E session makes me think it's cheap ;-)

  • Yup. Just googled it and if you have a private prescription, ponstan is 20p a pill and Tramadol is 5p. Stands to reason it costs the NHS more to prescribe you ponstan. Also it's effectiveness on gyne pain seems a well kept secret, hence the fact that it took a nurse housemate and not my own doctors to prescribe it. Beware tho it does constipate. But them so does codeine.

  • hi there i have tried this as they gave it me to stop my bleeding they did not work for me unfortunatly it just seems everything they give me makes me feel sick or does noty work i hope to go back to doctore tomorrow to see what eles they can give me xx

  • You know they call all these things non-steroidal anti-inflammatories? Well, what about steroidal ones? If you're in a lot of pain, then are there steroids that might help? Silly question I know, but have always wondered..

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