Looking for advice and to hear your story.. Hopefully will put my mind at rest!! Xx

Hi ladies, hope you are all as well as can be.

Just after a bit of advice..

I had surgery 10 days ago where my consultant sucessfully lasered severe endo and also 'unstuck' everything (my bowel, ovaries, tubes etc were all stuck together). I was down in theatre for almost 6 hours, but he seems really happy with how it went.

Before the op, i had three months on the Decapeptyl injections. The plan was for me to come off them after surgery, but specialist has now said he wants to keep me on them for another three months. And soon after that, he wants my partner and I to start trying for a baby.

I was just wondering if anyone had excision surgery and then endometriosis coming back..? I understand that we are all different and our stories wont be the same. But i'm just so frightened it's going to come back.

I had a diagnostic lap back in May, where severe endo was diagnosed. But i was told after surgery last week that it had got a lot worse since May.. And had gone to severe stage 4.

I'm still recovering from the op but have started to get the pains again deep in my pelvic area. It just doesn't feel like 'operation pain' if that makes sense, and i'm really worried. But surely it wouldnt just come back that quickly after 10 days?! Dont get me wrong, i feel sooo much better than i did before the op.. So i'm definitely seeing the benefits. But i'm getting twinges, tearing pain and also pain when my bowels move - just like i did before?

I'm also really really nervous about having my first period (which should be early Jan) after being on the injections for 6 months and having Norethiserone for 3 months prior to that. So i wont have had a period for 9 months. I'm dreading it! Anyone been through this?

Any advice or sharing your story would be greatly appreciated.

Xx

9 Replies

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  • Hi.. i had a lapo year and half ago.. unfortunatly its all back and they trying the pill as they dont want to do surgery so soon. I dont like the pain feels like pins stabbing and a hot burning feeling. But was also told its too soon to return but i feel the same as i did before op and its all it can be as been for all other tests and all clear. Iv read on here alot of people saying its returned fast. But can havin a baby help rid us of it?

  • Where is the pain and hot stabbing feeling? I think mine is back too but my doctor won't refer me until I have been back on my pill for 2 months. My hot burning is in my pelvic bones and back of legs and the pins and needles and aching is groin leg and hip on one side. I'm at a loss what to do apart from go with my doctor

  • The pain is near my hip but alot lower and far inside...its horrendus.. i feel in agony when walking or driving for too long

  • Yes my pains are in same place. Its taken me 2years and im finally have the op again..plus having the coil fitted to.

  • Where is the pain and hot stabbing feeling? I think mine is back too but my doctor won't refer me until I have been back on my pill for 2 months. My hot burning is in my pelvic bones and back of legs and the pins and needles and aching is groin leg and hip on one side. I'm at a loss what to do apart from go with my doctor

  • Hi, i had a lap a year and a half ago and it has come back unfortunately and also my sister that has stage 4 endo has had numerous laps over the past few years and it has also come back for her too! I have pain in my legs, lower abdomen and round to my back, and so does my sister! i hope you get well soon! stay strong

  • I had a lap 2yrs ago and I was told I had a small bit of endo. I then had a second lap in July to be told my endo was worse and had spread to my ovaries and the pouch of Douglas and my ligaments. I actually found after my surgeries that my periods were a lot easier and not as heavy or painful

  • You appear to have not realised that EVERY where you did have endo and it was attcked in surgery is now a healing wound. Ofcourse it will hurt in the same places that the endo hurt before- as that is prcisely where the surgery took place. These wounds will probably be burned back wounds to a depth of about 3mm of tissue. and they take months to properly heal, before you really know for sure if that did the trick.

    Diathermy and Laser do work - when the endo is shallow enough. They will not get down deep enough for the few spots of deep infiltrating endo but will certainly eradicate the shallow stuff which is the 1st step.

    Once your are recovered from the surgery - that's when you have a much better idea about how successful the op has been - that will not be less than 2 months and could be several months later.

    Please be patient - burns are notoriously long term for healing and regrowth of healthy cells.

    You need to research Decapeptyl too, as you may have missed that it shuts down the pituitary gland in the brain this does NOT automatically wake up when you stop the Decapeptyl - in fact it can take many months more after stopping the drug before it does wake up.

    6 months on average to get the sex hormones re-booted in to being produced again.

    ALSO the drug stays in the body for up to 4 months in trce amounts which could be toxic to any pregnancy. So you need to continue with safest sex (using barriers like condoms) or no sex until all trce of the drug hs had a chance to leave the body.

    That is 4 months after the last injection if given monthly- or 12 weeks after the next injection would have been due if you had gone ahead with it.

    During that time ALL endo is dormant - as it is now. Any pins you are feeling are not endo - they are aurgical wound pains - swelling, bruising, strains from the organs being moved about during the op.

    all of these will calm down and settle in the weeks and months ahead.

    And after the Decapeptyl - if you do get pregnant and carry to term - that will also keep the endo dormant well in to the breast feeding stage after pregnancy.

    All the time the endo is dormant - it cannot spread it is not active, it is not bleeding, it is not growing a new menstrual lining each month.

    As it stands at the moment - you have another 3 months of Decapeptyl at full strength - followed by 3 months as it works its way out - so roughly April is when you would be safe to conceive - but you can work it out from the dates of the doses.

    Your ovulation may not be stopped - but if it has been then you could have up to a year or more of waiting before ovulation restarts and you can try to get pregnant.

    Some ladies ovulate very quickly and restart their periods within weeks of stopping GnRH drugs - but it varies so much and it is entirely down to your own body and how quickly it reacts and wakes up the pituitary gland and then how quickly each of the hormones that are produced there are rebooted.

    Some hormones are more vital than others and should recover quicker - such as blood pressure regulators.

    Some never recover full production - in rare cases some never reboot at all leaving the patient with a life time of side effects as a result.

    For the time being concentrate on recovering from surgery - drink plenty water to help heal burns inside, keep active with gentle and regular exercise pottering about the the house and taking short walks outside. Eat healthy food - avoid anything gassy - zero alcohol, fizzy pop, caffeine baked beans etc.

    The pressure in the gut from extra gas build up while everything is swollen will get very uncomfy indeed.

    Keep the poo soft as can be - take laxatives or eat naturally laxative foods. That way you don't need to strain bruised and sore bowel pipe work too much when bearing down on the loo. Don't use them long term - but certainly for a few weeks it will help and give the pip work a chance to calm down without aggravating things.

    You will recover - it does take a lot longer than you anticipate though.

    Meantime - do your home work on Decapeptyl and how it works - use the search box on the green bar and type in keywords like

    Decapeptyl GnRH Prostap Lupron Zoladex ACTH

    use google too. The patient information leaflets for drugs are freely available on line if the clinic didn't give it to you to read.

    medicines.org.uk/emc/medici...

    and

    lupronvictimshub.com/ has a load of research and reports on the side effects and consequences of using these GnRH drugs.

    There are hundreds and hundreds of webpages on these drugs.

  • Hi, poor you, hope you continue to heal and recover quickly. I'm 5 weeks post op- it was a long journey to diagnostic laparoscopy , which was supposed to be routine short surgery to diagnose and treat if found any endometriosis .... I came round after a 3 hr surgery ( not quite your 6!) to be told I had severe stage 4 endometriosis and to also hurry up with the baby idea! I had a week off after surgery and went back to my part time teaching job the following week- thankfully I am home for 12.45- I then ate lunch, went back to bed and slept for around 4 hrs!!! But after the first week felt lots better than in months and definitely more energy ( the reason I work part time is because so exhausted all the time!) however have had a period hiccup!! ( not what you want to hear) however it was only 4 wks after surgery and was agony ( BUT had no symptoms till the day before it started where as usually I was wiped out week before, so that's a plus!!) but the pain intensified and ended up at out of hrs drs on tramadol for pain as struggling to walk, saw my gp niext day who gave me mefemic acid and northistemine ( spell) to stop period and signed me off for week.... He said my body was unlucky to decide to have a period and everything was still healing which is why pain was so intense had lots of endometriosis removed from around both ovarie. And various other locations around abdomen and cysts/ endometriomas . Back to consultant on 12 th no to discuss IUI ( am single, and running out of baby time at 33, seriously never thought this would be an ASAP mission!) but am desperate to have a baby .... Will see. I hope you will be all healed and should hav a less traumatic period. The pain you talk about sounds similar , mine is not in my pelvis as such ( do get twinges) but my lower back feels awful like its fused together or something and burning into my hips, right hip loads worse.... Been like it for nearly a week now.... And like you I figured endometriosis had gone for time being and to soon at 5 wks for it to come back.... No idea but my hot water bottle is certainly my new BFF !! Good luck with your journey and hope the pain subsides, take care x

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