I am so glad to have found this page. I had my first laproscopy last Monday. I thought I would feel the difference. Unfortunately, I'm still

Going through a lot of pain (the old ones prior to surgery). I am married and turning 31 in a few weeks. My husband is being fantastic and supportive. However, the fact that there is no cure for this disease feels surreal. I didn't think it would happen to me. I can't accept the fact I have to learn to live with it. I have been getting upset easily about every little thing. It has hit me like a tsunami and it feels like no one understands (not true). I am not sure how to learn to live a very painful life. Any advice? Thank you.

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  • I no how you feel I had laprosopy 3weeks ago they couldn't remove my ovaries as it was to severe I have 2 cysts which are endometriosis and now its on my bowel and pelvic wall.I had this when I was 31 so really fed up now of the constant pain I'm now47 iv asked my gp for a second apinion we shouldn't have to live like this keep strong this web site helps so were not alone xx

  • Thank you Kitty 67 for your kind words and support. X

  • oh my lordy you do need to give your body more time to heal - its' only been a week.

    I presume they lasered or burnt off the endo using diathermy. that;s the usual first line of attack on endo.

    This BURNS, it is worse or rather deeper than severe sunburn would be on the skin - and that never heals in a week, more like a month or more to get through the complete cycle of blistering, shedding the burnt tissue layers - intense itching that you cannot reach to scratch and then finally the fresh cells grow up from underneath.

    I think it sounds like you were rather expecting a miracle there, like it was just hoovered out of you and all you had to fix was the skin holes.

    You have had major surgery on several locations in your tummy.

    If you have burned yourself with an iron on several places on your arm would you expect to have skin all back to normal in a week? and that's with the added bonus of applying burn creams and soothing gel.

    The very endo that has caused you pain has just been attacked rather violently with a hot poker (really it's a medical wand but it amounts to the same thing), so yes it will be sore in the same places and for quite some time to come as yet, followed as i said by intense itchy (which you cannot put any aftersun or aloe vera on and have to just put up with the very strange tingles inside) then after that calm is restored and normality.

    it really does follow the same journey of healing as sunburn does - infact any burn for that matter.

    So please be patient and give yourself at least 2 months/ 8 weeks before you begin to have any idea of what the longer term effects of the surgery will be. Even if some areas treated end up with deeper endo which wasn't reached by the laser or diathermy wand, there will still be a significant amount of shallow endo which has been zapped completely.

    There is every possibility that there will not be any pain after the operation pains have healed up or at the very least you should see a decent improvement in most locations if not all.

    I had a massive surgery - laparotomy - took 5 months to be op pain free from that and cutting through 7 layers of tummy muscle with each stab wound from the laparotomy healing a lot quicker than anything else did. I was left endo pain free, but is sure didn't feel hopeful for a very long time while so much healing was required..

    Your main task is to avoid a repeat of the endo returning. Reduce the number or periods a year to 3 or 4 with bc pills, or stop them either by pregnancy or mirena coil.

    and taking care of your body while you are healing, eating regular healthy meals -plenty fruit and veg, and drinking more water than usual. Keep an eye on portion sizes if you are not getting as much exercise for a while.

    Also important is keeping moving - frequent walks and pottering about the house without doing anything too strenuous.

    If you over do it you will be in pain the next day for sure, but keeping moving helps healing, blood circulation and bowels to remain moving. It's very easy to get constipated after a lap op,pain killers bung you up, not drinking enough water for your burns and for healing will leave you dehydrated too, and get plenty of rest between activity spells as well.

    even the most basic op - a diagnostic - just looking with a camera and sealing up the holes straight away - takes 2-3 weeks of recovery for most ladies. If you have endo removed too then quite a bit longer to be fully recovered inside you.

    Getting tearful and depressed after any surgical procedure is very common as a side effect believd to be from the general anaesthetic. post op depression as it is known, is something to be aware of and seek GP help if it continues.

    Nothing to do with endo or the type of surgery - it can happen to anyone, any age group, and surgery.

    In deeper depression cases your GP may advise you take a course of anti-depressants to help you cope better with the recovery. but it is up to you whether you want medical help or just want to ride it out and recover in your own time.

    Personally I'd go for the anti-depressants every time, having had them and seen how rapidly they helped me to cope better, i would definitely recommend that as an option, but not everyone is happy to have a short course of more drugs.

    I'd estimate by mid june or thereabouts you will have a much better idea about how effective the surgery has been on your endo. take care while you recover and you will recover from the op. Just don't expect miracle quick fixes - this is real life not the movies.

  • This actually very helpful to me to (thank you!!). I had surgery in January of this year to burn off stage 3 endo and get rid of the adhesions. I am still in pain, and now that you mention it....duh, it is burn marks inside my body. I am slowly having lower pain pain days (and a few pain free days thrown in the mix), but my period pain is way worse then before the surgery. Now that I am thinking about it, perhaps it's the burnt tissue around everything that is being aggravated when it's period time.

  • Thank you impatient for the lengthy in depth advice. I tried talking to sp many but to no avail. Even the doctors and nurses didn't tell me what you have. It has been such an unpleasant experience. The reason I thought it would be a quick fix is because that's what I was told. Yes you got it right they did burn whatever was pn my pelvic and ovaries but they also said that it will come back. I have been ever so worried because I am also aware that there is no cure for it. The pain is excruciating and having to live with it os hard. But to be honest I have really appreciated your honest advice so thank you once again. X

  • I hope you feel better soon like they said its early days. That was real good advice for me to will find out my date Monday when I see my endo dr I've also go to have 7th cyst removed and part of bowel due to endo? My job is sometimes physical I'm work in a spa and can do 7/8 hours of massage a day. How long do you girls think it will be before I could work?

  • I don't think you necessarily need to live like this forever, if your endo is treated properly. Make sure you don't have a period (eg take cerezette); there are other options for keeping your progesterone high (eg I just found out you can have the coil in at the same time, increasing progesterone further). There are options and you have to stay positive or this will have a worse effect on your quality of life. Low dose of anti Ds can help (endo makes my anxiety much worse so I take low dose of amitryptaline which helps me sleep). Take it easy while you recover. Try to see the positives (its not cancerous) and not think in black or white terms only Xxxx

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