Anyone had endo grow back after having it removed?

Hi all to cut a very long endo story short. I was diagnosed with severe stage 4 endo and frozen pelvis back in Nov 2013. I then had a big op in May 2014 to remove it all. This op changed my life and I was even pain free for a while, it also allowed me to fall pregnant. I gave birth Aug 2015 and since then symptoms and pain started to come back. I now get really bad pelvic pain again that radiates from the back to the hip and down the leg, bleeding from the bowel and bowel issues! I was tri-cycling my pill as don't cope well with periods but the last I had was so bad pain wise that the gynae doc said not to take a break from the pill. I've been to see the registrar today (just been transferred to a new endo centre at a different hospital as my previous surgeon Is now retired) and they are going to do a lap in the next 6 weeks to take a look. He says endo doesn't usually grow back when it's been removed but they'll take a look and if any small adhesions remove them. They'll discuss after if I need a bigger op. Just wanting to hear from others with similar/same experience. When they say it's not likely to grow back I start to think we'll what's bloody wrong with me again. I can't see what else it could be as pain in exact same place as last time and all symptoms the same. I don't think I'm quite as severe as last time but as we all know it doesn't take much endo to cause a great deal of pain. I can't seem to cough or sneeze though without feeling like my right ovary is going to burst! 😭

Sending well wishes to you all 😘

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12 Replies

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  • I would say you know your body better than anyone so if you think its back it is likely to be back! I had a hysterectomy 2 years ago and have been told by several gynaes, including one at a BSGE centre that it can't grow back after a hysterectomy, well it can!

    To be totally correct its more a case of it regrowing than coming back. If you had it ablated (lasered off) there is a greater chance of them missing some, but even with Excision it is possible to miss tiny amounts, and this then continues to grow and can cause problems. Endo can feed itself, or can get oestrogen from other sources too - i.e. your ovaries.

    So let them do a diagnostic lap to see but I suspect you are right and it is endo causing the problems. If it is adhesions, that's still endo - its just the endo has created the adhesions and they can be quite painful so hopefully removing them will help too.

    Good luck

  • Thanks for your reply. I think you have hit the nail on the head with what you've said. I'm in a lot of pain today and it's exactly like I used to get so i'lol be very surprised if they don't find anything. That was also my fear about a hysterectomy as I've heard you can still get endo. It feels like a life sentence with this disease sometimes doesn't it.x

  • Totally agree it's a life sentence. Hope you get some answers and are out of pain soon.

  • Was your previous op in a BSGE Centre - I assume that's what you mean by an 'endo centre' ? If not, check out BSGE Centres on the 'Endo UK' website - link at top of the page. My local hospital has an 'Endo Clinic' but it's not BSGE.

    If it is a BSGE Clinic, they are the best at searching out, identifying all the different types of endo, and removing it all. However, if some was missed, or some only partially removed it can grow back. At least it seems you are being dealt with by the right people. Unfortunately it can grow back, and if there are scars from previous removal that can be painful, and growth in certain areas (where it may not have been before) can be more painful than in others.

    Did they offer you anything - like a mirena coil - after the surgery? It doesn't work for everyone, but it was wonderful for me.

    Hope you get some answers and solutions. Good luck!

  • Hi thanks for your reply, yes sorry that is what I mean by an endo centre. My last surgeon was very experienced and he was quite confident he'd cut it all away but I guess it's possible to have left a tiny bit. They only shaved it off my bowel last time though so maybe it's grown back there.

    The new hospital is a BSGE clinic and the surgeon there is very experienced too so I'm happy with that.

    Unfortunately I can't have the coil as I have a bicornuate uterus so it won't sit right.

    Fingers crossed the next op gives some answers. I'm so fed up with pain.xx

  • Boy I feel you. Same for me. I'm discussing another surgery laparoscopy In hopes in will decrease pain removing adhesion but from past and research with no cure to endo it mostly will return. I know having surgery in past I'm returning with same systs

  • Thanks for your reply. Sorry to hear you are in the same situation as me. Fingers crossed we both get some relief soon.xx

  • Hi

    I had my first lap in 2015 which diagnosed severe endo my bladder and womb and overeries where all stuck and I had many cysts growing too. I had severe fatigue abdo pain chronic back pain. He couldn't remove any in that surgery as it was to risky so I had a year of zoladex and hrt I had a 2nd lap in October 16 and he removed most of the end however 3 months later and all my sympmptoms are back and my gyne is convinced its back he tells me if defo can grow back but its a case by case on how quick etc.

    But only you know your body and if deep down you feel its back chances are it is!!

    Hope you get some answers xx

  • Thank you for your reply, I'm sorry to hear yours was back after 3 months!! That's crazy. What will they do for you now?

    They did say to me although unlikely it's not impossible for it to have grown back. The amount I read on here I'm thinking it's more likely than unlikely!

    The fatigue is awful isn't it. That's definitely retuned with me. Finding it very hard as I work and have 2 boys. Luckily my husband is fantastic and my older son understands that I struggle with pain.

    What will they do with you now then? Will you have another op?

    They want to go in with a small lap on me first as another big op will involve me needing stents into the bladder and it's much more risky. I'm just praying it's a small amount and they can remove in this op as can't bare the thought of waking up and being told I need a bigger op as I'll have to wait 6 months and it's just another 6 months coping with the pain and all other symptoms.

    I really hope they get you sorted so you can have longer than 3 months!!xx

  • Their not to sure with me as my periods have now stopped conpletly and I'm having severe bowel problems I'm guessing another op soon tho.

    Are you already at a specialst endometriosis center or just under a normal gyne? I've heard you get so much better result, help and support from a specialist center

    Thank you and hopefully your op will be a success and you won't have to wait long xx

  • Yes i'm at a specialist centre. My old hospital isn't one anymore as the surgeon retired and they've not replaced him yet so I've been transferred to a new hospital 2 hours away that is a BSGE place.

    Thank you I hope so too. Best of luck with your treatment going forward.xx

  • I have had endometriosis for 10 years without a period and each time it has been removed it comes back even worst.Got sick last year ended up in the hospital due to something called a Desmiod Tumor. But a pin them doing surgery which was supposed to take 2hours ended up being 6 hours due to endometriosis covering my entire abdominal wall as well as my lower stomach muscles which had to be removed because it wss so bad.I recently found out 2weeks ago that it is now in my vaginal walls. I'm getting ready to start a shot called Zoladex which is going to medically induced me into menopause.

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