Been told my Endo is cured?!: I posted this... - Endometriosis UK

Endometriosis UK

63,900 members49,258 posts

Been told my Endo is cured?!

LoLoLeanne profile image
32 Replies

I posted this a year ago: please read this one first if you haven’t already and then come back to this post: healthunlocked.com/endometr...

This is my new post:

SO, I have now just had my second excision surgery. My new endo specialist literally told me I’m “cured”. He found no evidence of endometriosis and so therefore I do not have it anymore. I honestly wanted to punch him in the face. Even the nurses were like he’s an arrogant man and none of us like him. So what do I do now 😂😂😂 obviously I am soooo glad that it’s not grown back but still having pain etc? I suppose that’s normal? But he said he found nothing at all, not in bowels, bladder or uterus. Ovaries are fine, fertility is fine? He said that there’s nothing he can do as I don’t have endo anymore? I am well confused!

32 Replies
Moon_maiden profile image
Moon_maiden

Hi good in a way if none was spotted, but doesn’t explain the pain.

There will be a reason, either other investigations or they won’t answer. I tend to get the won’t answer as I really don’t think they know. I’ve been told I have nerve damage from it, although investigating other things as well.

I’ve started cannabis recently for pain, I think it’s helping.

I hope you find a reason and get things under control

Mony_1885 profile image
Mony_1885 in reply to Moon_maiden

ooh, can I ask what form you’re taking the cannabis in and whether it’s been obtained via prescription? I’ve been looking at companies like Zerenia who do private (expensive) prescriptions.

Moon_maiden profile image
Moon_maiden in reply to Mony_1885

Hi

I’ll PM you with info. It is prescription only but there are schemes.

Mony_1885 profile image
Mony_1885 in reply to Moon_maiden

thank you!

Purplehaze01 profile image
Purplehaze01

OMG he sounds like my last surgeon I’ve had 3 laps my last one about 6 years ago. The surgeon , when I was back on the ward, announced rather loudly he didn’t find any evidence of endo and I was constipated. I seriously doubt his judgement as I am still in daily pain, still bleed weekly, still take painkillers nearly everyday, but still don’t go to my GP to tell them my symptoms due to what and how that surgeon said to me in front of a room full of people. My advice is don’t be like me. Doubt what the surgeon said and get a second opinion. Good luck hun

Moon_maiden profile image
Moon_maiden in reply to Purplehaze01

Hi you should go back to GP, it’s not easy I know. I spent most of my life ignoring it and my body is in a heap of trouble from possibly Endo damage. I’d recommend getting a copy of your hospital records so you can see all the notes. Take someone with you to the GP and go to a different hospital if you can.

LoLoLeanne profile image
LoLoLeanne in reply to Purplehaze01

That was my second opinion 😂

Avourneen profile image
Avourneen

Hmmm sounds a bit fishy. If there is no endo that is great, but this seems really odd. There isn't a cure for endo you can have a good excision and it stay away for years but i no very few people who are that lucky. You could still have lots of pain from adhesions or nerve damage, that give surgeons a handy excuse/explanation for continuing pain. I don't understand why you had a second lap without a scan? If you had a scan you would know for certain if there wasany endo left. You also shouldn't have a lap without a scan first.

I know a surgeon who makes claims like this and when his patients go back still in pain after poor surgery he tells them they are cured and any continuing pain is just in their head. This sounds very much like the same pattern of behaviour.

If you can get a good MRI you can be sure that the endo has really gone. If you still have lots of pain it could well be the nerve damage or adhesions. Try a scan and then you will know. xx

Heloo85 profile image
Heloo85 in reply to Avourneen

of course endometriosis is curable in some people! Just as cancer is! In others, they don’t outlive their disease!

Endometriosis can disappear by itself with no medical intervention! Or it can progress to become much worse!

Generally they don’t call it curable because there’s always a risk it can come back! But people generally go through stages of remission!

ForABabyPanda profile image
ForABabyPanda in reply to Heloo85

yeah my aunty had ‘cured’ when she was younger - they thought it was her appendix, found endo, cut it away and put her on the pill for a year when she was a teenager, hasn’t had problems since. I didn’t even get relief much after surgery. Ps I was sent for lap without scan

Heloo85 profile image
Heloo85 in reply to ForABabyPanda

I had the same fate! Taken into theatre blind, no scans, just an ultrasound that supposedly showed I had no active disease? Well, no cyst! I was put down for intermediate surgery, had major, then later become inoperable! I know, since getting my notes that I had a lot of adhesions, and daily pain! Surgery made me worse! A lot worse! Im thinking the biggest pain factor in Endometriosis is not actually endometriosis itself as such, although I do have severe disease everywhere, but I think the daily relentless pain is the adhesions! I could be wrong!

In saying that, although I had notable daily pain, as I’ve got worse I now have cyclic symptoms! So daily level of pain, then ovulation, and just after my period is where I’m now at my worse! Like can’t get off the sofa kind of bad! Xx

ForABabyPanda profile image
ForABabyPanda in reply to Heloo85

thankfully I’ve nEver been that bad. I was referred for surgery and stupidly believed everyone when they said it was minor surgery. I never ever felt myself after the first lap, they found endo but didn’t operate! I had to go back to get the operation. I think I got to the point once I felt mostly myself after first surgery I decided I wasn’t in enough pain to warrant surgery for pain, but by that stage I found out I was infertile so I only got the surgery in case it fixed that. It did not. Just had first round of ivf and 3 days til I find out. If it worked. I don’t feel like it has tho

LoLoLeanne profile image
LoLoLeanne in reply to ForABabyPanda

Fingers crossed and sending love your way xxx

Heloo85 profile image
Heloo85 in reply to ForABabyPanda

I’ve absolutely no idea what’s going on with my health! I know I was in a bad way, as prior to my lap I was violently sexually assaulted and ended up with a severe pelvic infection. I was opened and shut and sent on for my second surgery. Which got put off for a year! Taken into theatre blind! Had major surgery, still not told anything! Just got my notes and anyway I had obvious signs of chronic infection, from the PID. Which they left, and didn’t treat! I spent 4 years in agony! Agony! Losing weight! Left on 3 monthly consultations and regular scans that showed my left ovary wouldn’t resolve. To then start losing drastic amounts of weight! Rashes! Pain and then sepsis over about a 6 month period! Since then I bounce between ok, and drastic weightloss/rashes! They have assured me the left ovary isn’t cancer, but won’t biopsy it! Also said if they remove the left ovary which is currently pinning my bowel to the sidewall I will be left with a colostomy! They’re now seeking a second opinion from another surgeon to see if their team will do the surgery!

So at this point, it’s fairly obvious my Endo, if I do actually have Endo, is complicated with infection! No idea if it’s complicated with cancer or not, as no one will do biopsies! I’m currently skin and bone while they do nothing!

Fingers crossed your IVF works! And that pregnancy puts your disease into remission by balancing your hormones!

Xx

Jazzransom profile image
Jazzransom

I have just had the same thing! MRI results came back clear apart from a fibroid, endo has not come back. But I have daily pain who gets worse month on month and it’s exhausting. I keep getting discharged and dismissed and I think it all comes down to the fact that they don’t know how to help us. I feel your pain literally 😔😔. It’s horrible because you feel like you’re wasting time and like everyone thinks it’s in your head. And then you start to wonder if it’s in your head! At least we aren’t the only ones. Xx

WanderingFox profile image
WanderingFox

Oh wow that’s exactly what happened to me, had in 2016, had a laparoscopy and nothing found, told I no longer have endometriosis but I’m in pain and no one knows why.

635703 profile image
635703

write to PALS and ask for a second opinion and say his arrogance scares you because there is no known cure for Endo. 🙄💩

LoLoLeanne profile image
LoLoLeanne in reply to 635703

I’m on it! Definitely going to complain!

635703 profile image
635703 in reply to LoLoLeanne

I hope this goes well for you lovely ☺️ What a douche bag, and there is no need for it!!

bunmum2 profile image
bunmum2

I really feel for you, and hope you find a solution to your pain. I used to have Vitex agnus castus a herb prescribed by a medical herbalist and this helped me a lot. I am now menopausal and have been trying different things to help with my current symptoms, and notice that they might also help with PMS/pain/bleeding and these are a Lady Care magnet which apparently stimulates the autonomic system? and can help with menstral problems too, also I've tried bio identical Progesterone cream by Wellsprings, this may also help with bleeding etc. due to oestrogen dominance problems which apparently may cause Endometriosis (though I dont think this claim is proven) it didnt seem to help me as I became dizzy on it. I can definitely say the magnet helps me, I also have M.E., and this magnet seems to help with my energy levels. Anger and anxiety will make you feel worse, try to keep relaxed as much as possible. I also tried Reiki healing and reflexology, these also helped me with my endo. pain. xx

Tttt4444 profile image
Tttt4444

I was told by my surgeon after my surgery March 2021 that there is no cure for endo and it is a progressive disease and when I complained of still having pain after surgery that it would be from microscopic endo that couldn’t be seen during surgery

LoLoLeanne profile image
LoLoLeanne in reply to Tttt4444

Mmm that’s interesting thank you xx

Tttt4444 profile image
Tttt4444 in reply to LoLoLeanne

ur welcome 🙂…I would go to another doctor, good luck❤️

Highlandgoat profile image
Highlandgoat

I was told that having the surgery wouldn’t necessarily mean I would be pain free. A few women still have pain even without endo.

Apparently sometimes your nerves get used to pain if it’s been over a long time and continue to act as if there is pain even after it’s gone, they don’t totally understand why this happens.

I’m sorry you’re still struggling when it should have been over.

Tttt4444 profile image
Tttt4444 in reply to Highlandgoat

I’m sorry if this sounds rude I’m not meaning to but I wouldn’t believe that doctor it sounds like a doctor that just doesn’t want to do anymore for u and would rather give an excuse for ur pain than consider his surgery didn’t get rid of all the endo, I would get a new doctor, I’ve never heard of this reason for continued pain after surgery but I have read about many doctors not listening to patients and telling them there was nothing wrong with them and then later to have another doctor do surgery and find tons of endo still remaining

LoLoLeanne profile image
LoLoLeanne in reply to Tttt4444

agreed xx

Highlandgoat profile image
Highlandgoat

I get what you’re saying but that is the definition of chronic pain. They’re is no reason for the pain but that doesn’t mean the pain isn’t real, they just don’t know why it happens.

LoLoLeanne profile image
LoLoLeanne in reply to Highlandgoat

But I’ve been diagnosed endo? And now I don’t have any diseased tissue but still having pain after being told I’m cured!

TogetherWeAreStrong profile image
TogetherWeAreStrongModerator

Ladies, what a roller coaster we ride, I hear you all and can resonate with everthing you are all saying. I have had stages of remission, post surgery, with very carefully planned after care/pain managment from drugs, to acupuncture, swimming etc. I live my daily life with a certain level of pain, which is not ideal. I am only sorry I was not aware of this site sooner. Please share who we are to all of your friends and family...let's make them aware of us X

Misinterpret11 profile image
Misinterpret11

hi there ! Great news about the endo not being visible !

One possibility you can bring up with your doctor is to get the freezing injections at your pain points. My gynaecologist, said something about trigger points and how your body gets used to feeling pain in certain spots even if there’s nothing causing the pain anymore.

LoLoLeanne profile image
LoLoLeanne in reply to Misinterpret11

well he’s discharged me like the last one so kinda hard getting any sort of treatment

rossemma1 profile image
rossemma1

Hi

I’ve not written on here for serval months at least a year but I had removal of Endo in Sep 2020 - had another laparoscopy on Feb this year all clear still in mostly daily pain / had a private scan in Oct still couldn’t find anything

You may also like...