How soon has others endo returned? - Endometriosis UK

Endometriosis UK
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How soon has others endo returned?

lizzyxx
lizzyxx

I had my excision surgery 10 months ago and since then I've been on both combined and mini pill and now I'm on gnrh injections. My pain was massively improved after surgery but my symptoms started returning after a few months and now I feel like I'm back to square one. Has anyone else's endo returned so soon? xx

15 Replies
oldestnewest

I had my surgery in May 2018 and felt relief a few months later, once fully healed. For the past 6 weeks I’ve felt like all my symptoms are back and some with a vengeance and I’m pretty sure it’s grown back. I’m already missing the 11 months of relief i had. I’ve been taking my pill back to back as advised after my lap and had hoped it would really slow things down but it appears that’s come to an end.

Xx

lizzyxx
lizzyxx
in reply to Char411

Thanks for your reply, the injections have helped with the pain returning but the pain hasn't completely gone and now I have the menopause side effects to cope with on top of it all. I see my consultant soon for my year check up but feel like if I tell him I'm struggling again he's gonna think it's all in my head as I've already had surgery, took years to be finally listened to and don't think I could go through that again. What are your next steps if you don't mind me asking? xx

Char411
Char411
in reply to lizzyxx

I’m waiting to be referred all over again 🤦🏻‍♀️ It took 9 months last time. Where I am they seem to sign you off once you’ve had surgery, like you will be fixed forever even though they know it grows back.

Looks like it’s back to square one for me which is really really deflating as I had to fight so hard to be listened to the first time round.

Hopefully your specialist will be able to help your symptoms xx

lizzyxx
lizzyxx
in reply to Char411

Oh no way that isn't right at all, I haven't seen my consultant yet since surgery but I've seen the nurse a few times for my injections but they don't know much about endo so saving all my questions for when I eventually see him but won't be until September. Are you going to ask for more surgery? xx

Char411
Char411
in reply to lizzyxx

It was once I’d seen my consultant after surgery that he signed me off, very frustrating. I am desperate for the relief but also dubious about having another surgery again so soon as I know multiple surgeries can cause adhesions and further problems, it’s literally a viscous circle.

I think I am going to go back to the low fodmap diet whilst waiting as I’m having a lot of gastro issues and this helped me before but it’s so restrictive.

What I wouldn’t give to just feel like the old me before all this started 3 years ago xx

lizzyxx
lizzyxx
in reply to Char411

I don't want surgery again as it was so painful afterwards as I needed a couple of extra procedures doing which weren't pleasant. I just want to be pain free and not feel like I'm 70 lol xx

Char411
Char411
in reply to lizzyxx

Honestly I feel exactly the same, my surgery lasted 3 hours and I had to have a month off work.

I wallowed in self pity on Tuesday, got home from work and laid on my bed a cried to my boyfriend that I feel like an old disabled lady.

Let’s hope we are just having flare ups and some better days are ahead xx

Mine returned pretty much after surgery as my surgeon left some in there. I went for more scans about recently and it’s blocked one of my tubes now.

Endo can return quite quickly if the hormones are suppressed as they help it grow xx

lizzyxx
lizzyxx
in reply to princessk09

I had a lot of endo it was pretty much everywhere and tbh my pain never completely went after surgery but it massively improved to the point I finally felt myself again after so many years in pain. Just feels like it was all for nothing. What are your next steps then if you think it's grown back? xx

princessk09
princessk09
in reply to lizzyxx

Yeah my pains never fully went away after surgery either which is disheartening. And I can’t see my gynae till September but I’m trying to see another one whose an endo specialist but it’s all just a waiting game xx

lizzyxx
lizzyxx
in reply to princessk09

I have to wait until September too when I've finished the injections, did they help you? xx

princessk09
princessk09
in reply to lizzyxx

I was on zoladex and it helped a bit but I couldn’t cope with the menopause and depression plus it caused me bladder issues which is rare xx

lizzyxx
lizzyxx
in reply to princessk09

I'm suffering with the menopause too and the hrt is adding even extra side effects lol xx

Hi Lizzy I had my surgery in may and this last month has been hell again, painful sex awful cramps in legs and back, feeling sick missing social events and work, crying with it all!

Hi Lizzy,

I see it is an old thread but i guess its an ongoing thing for us.

I had my first surgery in 2014 November, it was a laparotomy so i guess i ended up with way more scarring inside. 5 month later my cyst was 5cm and the pain crucifying. While 1,5 year I was waiting for next surgery I was on the pill which helped me to mantain the pain. The cyst grew into 8 cm. I had my 2. surgery but they couldnt remove the cyst as they said they could not even see my ovaries from the scar tissues. Need better imaging but for other reasons I cant have MRI. So after another 1,5 year waiting finally they cleared me up, removed cyst and loads of crap. Luckily they did not need to touch my bowel. Ironically when i asked what they know better this time if still no better imaging, the answer was that this time it is the specialist team not the general gynaecology...It took 3 years to figure...Anyways. After all the crap and hoplelessness the world is better place now.

I have changed my diet completely. I went completely plant-based. So last laparoscopy was done in 2018 April. I believe its not a coincidence that since then I have no pain. I do not take any medication except ibuprofen on the first day of my periods. Periods are like clockwork. I have never had so easy periods in my entire life. I used to faint and puke even in my teens. I went in January for ultrasound because i wanted to know whats inside but i had no cyst. 1 year and 8 months being painfree is still feel unbelievable for me.

I wish for all of us to find the way to make life quality better and be painfree.

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