Endometriosis back less than a year after surgery

[Lilian75]

Hi its actually my daughter im worried sick about.Shes been in and out of hospital in severe pain and vomiting for 3 years. Finally had laparoscopy last august,where the dr said he found mild endo on her ovary and put the mirena coil in.Now 9 months later severe pain and vomiting again!and now been put on zoladex ..shes 23 and had a breakdown. Can anyone give advise?can it grow back this quickly?

[Goiaba]

Hello, I’m sorry your daughter is suffering so much!

Unfortunately yes, it can grow back. My symptoms started again after 10 months of my first lap and around 8 weeks after the second one. I’ve heard it is due to how my body deals with the disease and my endo being quite aggressive.

There are a few things she can try to help cope until the next surgery (if she will need one) that definitely help me carry on with my life. The pain is still here, it never went away completely but at least I’m not missing work or passing out like I used to.

An anti inflammatory, low fodmap diet helped me the most. It’s quite restrictive and challenging but it helped massively with my bowel pain and bloating. Being actively works like a painkiller for me. It was horrible at the beginning because I had to force myself to exercise while dying of pain, but now it’s part of my routine and it alleviates the pain. I am currently on my 7th month of Prostap + HRT whilst waiting for my surgery and this has significantly reduced my pain. Obviously it’s not that good for everyone and in my case, I am 29 and currently waiting for a total hysterectomy - I also have quite bad adenomyosis and I believe I have benefited from the injections and the lack of period because of that and not endo itself.

I have a friend that, after her lap, she continued with the strict diet and lifestyle exercising regularly and was able to manage the condition and pain with no hormone intervention. It will depend on the severity of the condition I guess.

In sum, yes it can grow back that bad I’d recommend going back to the specialist consultant and maybe ask questions about the last surgery to make sure everything was removed and this is new endo, not remaining lesions that are flaring up again. Good luck xxx

[CryBaby91]

Hi LilianI'm so sorry your daughter is struggling, but having you fighting her corner is a massive part of the battle! Yes it absolutely can grow back that fast, especially if the surgeon did ablation, do you know if that was the case?

If you have Twitter there's some amazing endo advocates on there who have helped me IMMENSELY. I honestly would have had a breakdown (again) last year if they hadn't stepped in and reassured me that I wasn't insane, my endo absolutely could come back that fast. If you don't have twitter there's also an amazing group called Nancy's Nook, same people as I was talking to but they made a whole support group full of information. They also help get patients information to take to their GP and request a referral to a specialist. This is especially helpful if you have already had a gynae do treatment and that failed (as in your daughter's case).

Does she have a plug in heated pad? For pain relief it's fabulous, and less faff than filling hot water bottles multiple times a day. She may also want to try a TENS machine, it's not a cure but does help take your mind off it. Please let her know that she is not on her own, I was poorly at her age too and it took my best years from me, no doctors listened and I was 30 (almost 31) before I was diagnosed. So lots of us totally understand how she feels! Xxx