Endo coming back ?? :(

Hi! I am a newbie to forum but not to endo :( ive previously had it 3 times, had 3 ops (last one 2012)and god knows how many meds, treatments etc. short story long.... I had my first baby in august 2013 all well etc. feb -may this year my periods have become noticeably painful, awful back ache bleeding still when starting new pill packet.i went to to my drs and they said take ur pill packets back to back for a few months and see what happens- im 3/4 way through my 3rd one and hey presto last night i start bleeding and i still am :( i have cramps , backache etc and feel like s**t, i know its creeping back :( ive had it 3 times before and i know exactly how my body reacts and what symptoms occur. I am going to my dr on monday... I know what to expect. Ive been told i cant be operated on anymore as not good for me and can damage insides. I have one lovely baby so if they told me i couldnt have babies anymore or to have my ovaries burnt out i should be happy that i have a son. Im just dreading that it is endo again and i want to go back to work and not be ill. When i had it before i was off work so much in and out of hospital. Sorry for babbling on - what do you ladies think? Xx

4 Replies

  • I'm in a similar position congrats on your little boy! They've said its in my organs and the surgery will be too much. They want me to wait til I'm at least in my late 20s and have told me to have another baby. The pain won't stop you conceiving so it's up to you. It's just so hard when you have a beautiful baby and you just want to be a good mum to the one you have but you're in pain all the time. So I don't know the answer. But I understand how you're feeling xxx

  • Its only just started again after 2 years! I had it 2008/2009 then 2011/2012

    Day 3 of bleeding, it isnt a huge amount but its the aching and cramps that i hate plus fatigue x

  • You don't have Endo, it goes away and then comes back again. You have Endo from birth as it is a faulty gene that causes the symptoms. In your case, they operated and it temporarily stopped symptoms. This happens to many women but then after a few years it reoccurs and symptoms start to show as the Endo starts becoming an irritant again. It is most probably back and if you aren't that bothered about another child then I would just have a hysterectomy. That wont stop the pains definitely though if you do have it as the Endo could be growing in other places like your bladder or bowel and that means the pains will continue.

  • I disagree. The cause of endo is widely unknown and fiercely debated amongst specialists.

    Many women who have hysterectomies do not get relief. There are plenty of medical papers to support that hysterectomy does not always resolve endo. Having the uterus removed will only help a condition called adenomyosis (endo in the uterine wall). Adenomyosis can only be diagnosed by MRI when you are actively menstruating.

    Losing your ovaries at an early age puts you into surgical menopause and this can cause long term health problems including heart disease and osteoporosis.

    Endometriosis can be widespread through your pelvis. Including in the pelvic lining and non-reproductive organs eg bowel, bladder. Having a hysterectomy will not solve this.

    In summary having your uterus removed will remove adenomyosis which is why some women report relief. It does not help women who do not have adenomyosis. Having your ovaries removed removes the hormones which fuel endo but then you end up on HRT which synthetically feeds your endo! There are also environmental chemicals which mimick estrogen which you can not completely protect yourself from e.g soy products (even in most loaves of bread, plastics, chemicals and pesticides).

    Excision surgery of a wide part of your pelvis is your best chance of permenant relief. Some consultants are now conducting a procedure called radical excision where they remove not only the endometriosis that they can see but also the tissue in your pelvis which to the naked eye may look normal but could contain microscopic endometriosis. This is called Total Pelvic Peritoneal Excision. Many women who have this wider level of excision end up with much lower reoccurrence rates which lends to the theory of microscopic endometriosis. At a recent world health organisation endometrosis event a top Chinese researcher showed evidence of microscopic endometriosis.

    If you are interested in reading anymore about this PM me and I will send you some links! Please do not let people tell you you need a hysterectomy unless you have proven adenomyosis.

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