Will endometriosis come back?

Last year I had a diagnostic Laporoscopy to try and find out why I wasn't conceiving, I was told I had 'mild endo' which was treated and the lap & dye test didn't work which indicates both tubes blocked however they could not be 100% sure. About to start IVF treatment and recently read somewhere that Endo will come back and generally within 6 months. I had an HSG too in the hope it somehow helped unblock my tubes but my point is no one has ever told me it can come back and so quickly which is frustrating as been trying for so long and got hopes up after Lap/HSG another year on nothing but luckily our names reached top of the IVF list. So how do you know if it comes back? My consultant at the clinic replied ' well it was only Mild and it has been treated' . Also they wouldn't contemplate doing another Laporoscopy as too risky at my age to do more than 1 (am 39) Also they have ruled out tubal surgery again due to my age.....:( Of course I wish I tried for family sooner but perhaps if I was made aware fo this diseases and how it can affect your tubes while reporting all the symptoms over the years then I would have!! Every time I approach subject with my GP or fertility clinic it is brushed off as not important and nothing to worry about. However I have been reading up about ways to prevent it coming back, diet changes etc but I was not told anything other than it has been treated. I am doing my own research now as not taking their word from anything. Lesson learned as after years on contraceptives I had very heavy/lengthy periods and apart from an ultrasound was offered nothing and made to feel like I was causing a fuss about nothing !! Once diagnosed with Endo my research told me I had all the symptoms and had been back and forth to different GPs over the years and not once anyone spotted the signs or made me aware of this. I now feel the race is on as am almost 40 now and desperate for children. I think there should be more awareness of endo as I had never heard of it till I was diagnosed.

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  • Hi

    Unfortunately your experience is very much the norm. It is inconceivable that the ignorance about endo among GPs and gynaecologists has remained largely unchanged in decades. When I first had symptoms in the mid 80s, which took 20 years to diagnose when I finally needed emergency surgery for it, I had been told over all those years it was in my head. The tragedy for me is reading so many stories of girls and women still being told similar things with their symptoms left un-addressed. Time has stood still in all those years. Please have a look at my post on endo and its many possible symptoms to get an insight as to why this is.

    First of all there is no knowing whether endo will come back. Certainly it can and new endo can grow. Because the immune system causes remain unknown and everyone's immune system is different there would be no way of predicting how long a recurrence would take if at all. It is likely that you were seen by a general obstetrician/gynae who deals with fertility issues and was therefore concerned with endo in so far as it might affect the reproductive organs, but it can effect other areas of the pelvis too that they often miss. Whether or not the endo you had treated will come back depends on just how mild it was and how it was treated. General gynes usually use 'ablation' which means burning it off rather than removing it. This can completely destroy the mildest endo but can also leave the base tissue to regrow. So in your case there really is no way of knowing.

    I don't know why you have been told that you are too old to have another lap as many women have several before finally seeing a proper specialist in endo. I had an open lap at 44 to have a hysterectomy and ovaries removed with no endo found. Another at 51 to have stage 4 excised after it grew under HRT and what I hope was my last extensive one when I finally got treated by a proper specialist at age 55. There is no age limit, but what is important for you is that if you do have symptoms recur then you must ensure you are seen by an endo specialist. This is your right and choice - see my post on finding one.

    But your immediate priority is to go into your IVF programme with a feeling of positivity without worrying about endo. IVF can be an emotional journey and you mustn't get stressed about other things. If in the future you do need to address endo again the means are there for you to get proper treatment.

    I do hope your IVF is successful. x

  • Hello, unfortunately, this is very common, most medical proffessionals no very little about the disease so chose to give up the wrong information or just brush it under the carpet,

    Endo isn't curable, so you will always have it as such, it can grow again, not nessasarily in the same place, there are 2 treatment procedures laser that isn't or shouldn't be used really as it only shaves Off the top and incision which physically cuts it out from root,

    if you have been seeing a genral gyne doc that dosnt specialise in endo, it is likely that small peices of endo can be left behind and will carry on growing,

    I think endo can come back any time, don't think it's more likely to be in 6 months,

    Are you still getting symptoms???

    If so what are they???

    Do you no where it was found???

    I'm also 39 and have just had first lap 3 weeks ago, again after numerous visits to Gp regarding painfull periods ( apparently normal) and hip and groin pelvic pain (apparently because I suffer with back pain) my consultant however has been fab, due to see him again tomoz, ive also been diagnosed with endo excised from behind uterus and ligament and adenomyosis, similar to endo but grows into wall/mucscle of uterus, only cure for this is hysterectomy, I'm blessed with 3 sons so I'll go with this as Dont want anymore children.

    Xxx

  • Please check out napro fertility, they listen and work with your body. I have stage 4 endo and have had 3 perfect babies after regular gyne said I would not conceive xx. Good luck

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