Really confused following surgery. Am I c... - Endometriosis UK

Endometriosis UK
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Really confused following surgery. Am I cured?

Rollipo
Rollipo

Hi ladies, I was hoping someone could help me. I am driving myself insane looking through dr google etc. I had a laparoscopy in January where they found minimal endometriosis (which I would imagine would be classed as stage 1) and this was burnt off so to speak. Now, I work in a hospital and overheard a nurse speak to another nurse who was learning about endo that technically if they remove a nodule or some endo during surgery that that should be you cured from endometriosis. Everything I have read and been told is that there is no cure and that this chronic. I feel like a fraud as there was only a small amount and it causes me a lot of pain but they are saying I am cured? I am sorry for asking but can someone help me clarify this? I felt very validated after my surgery but not anymore. Thank you in advance xx

22 Replies
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It’s not cured after lap as it can deposit itself in other areas, this is my personal opinion on what’s going on with me and also girls I know going through this. They normally put you on some kind of pill which can stop it progressing. Also the burning away isn’t the best standard of treatment as it doesn’t remove it all, surgeons now cut it away. They burnt the first time with me and I had to have another lap where they cut it away 2 years after. He described the burning technique (can’t remember the name of it) as pulling a weed and leaving the roots in place so it’ll keep growing. Even mild Endometriosis can cause severe pain but some ladies with severe endo can have little pain it’s so strange. I started off mild but when they went back in it had spread. Due to have my third lap next month and this has been going on for about 7 years for me. Also the scar tissue can cause you pain. It’s an awful condition, they may be learning about it but they aren’t living through it. I’d say if you are still having the pain you need to go back to GP and see about being referred back to gynaecologist. I know for me after the laps and the review they are done with me. Then it gets bad and GP refers me back, it’s a long process x

Rollipo
Rollipo in reply to Laura_T

Hi Laura_T, thank you so much for taking the time to reply to me. I am sorry to hear about all your continuing pain, surgeries etc. I had overheard this and became very confused. Reading your story puts into perspective how this is sadly a chronic condition. Thank you for clarifying this as I was thinking that things were maybe cured and this pain was maybe in my head as such, I have read some horror stories about people being accused of this. Many thanks again. Take care xx

Laura_T
Laura_T in reply to Rollipo

It’s not in your head. I’ve had people say that to me and it really upsets me. We all know what you are going through. Hope you get answers soon x

Chiara17
Chiara17 in reply to Rollipo

Generally speaking pain is something that each of us take on, in a different way, once I had a close friend saying to me that she was very good at dealing with pain while I was not,which made me infuriate. Pain is not something you can measure so how can you judge what someone else s pain feels like?

Once you have your endo diagnosed during a laparoscopy how dare they saying that you are making your pain up? Endometriosis is a real thing, so is your pain.

I wish I could say that endo can be healed but from what my consultant said to me, which is that endo will never stop coming back again and that's why we need ongoing treatment, and also considering that it is called a chronic illness I m pretty confident that there is not a surgery that can cure it.

Often people makes assumptions..and they talk about things they don't know..Sorry they gave you a false hope.

The good thing is that even if we have a chronic illness we can still keep going with our lives and find new treatments and lifestyles .

Rollipo
Rollipo in reply to Chiara17

Hi Chiara17, many thanks for your reply. Thank you for your reply and for telling me about your experience. I was really doubting myself after hearing this but after getting support here on the forum it’s really help put this illness into perspective. Thank you so much for you support x

Endo cannot be cured. IN ANY WAY. EVER.

It can be sent into remission via excision surgery (I hope you had excision and not ablation), dieting, lifestyle changes, some take Visanne or the Mirena coil.

But it cannot be cured.

Please only seek specialised and certified help

Rollipo
Rollipo in reply to StefaniaJW

Hi StefaniaJW, thank you for your reply. It’s reassures me of my first thoughts and knowledge about endometriosis. I did have ablation rather than excision. I guess by your comment that ablation is probably the best option then? Many thanks for your reply x

StefaniaJW
StefaniaJW in reply to Rollipo

No, ablation has much higher rates of recurring endometriosis and it doesn't treat it effectively, Excision is ALWAYS the best choice.

Rollipo
Rollipo in reply to StefaniaJW

Thank you for letting me know, any information is good to have x

StefaniaJW
StefaniaJW in reply to Rollipo

The doctors that are still performing ablation to remove endometriosic lesions should be disbarred imho

I was diagnosed Stage 4 for the first time and had it cut out of 5 organs. I’m coming up on 2 years post op and I have bladder pain. Obviously, I can handle pain. They have the audacity to say they can check for a uti. I’m over going through emergency medical procedures because doctors won’t listen. It’s exhausting.

Rollipo
Rollipo in reply to Seachel

Hi seachel, I am sorry to hear about all the problems you are having, thank for your reply as this helps with my head an awful lot. Many thanks xx

Hello! I agree with the gurls on here . There is no permanent cure for endometriosis. As it can come back at anytime with any amount of vengeance. I’m a stage 3 patient who had severe pain in day 1-2 from d age I had my periods but always was put off my gp until the age of 23 . And very fact many surgeons don’t want to operate if u can live with small agonies as like I said it can’t be permanently cured . They’ll take off few nodes . You will fine but once you start your periods you will be back with your endo. And many drs also recommend have a baby is a form of cure too as their is natural no bleeding for 9 months .

I had 3 laps myself but after which now doc says just leave until I’m finished with fertility business and then they would think about maybe a full hysterectomy.

Rollipo
Rollipo in reply to tiger-cub

Hi tiger cub, many thanks for your reply and for further cementing my beliefs about endo. I really do appreciate any info on this.

I am sorry to hear about your ongoing issues too xx

Abbbb
Abbbb in reply to tiger-cub

Hi Tiger-cub,

so sorry to hear youve had issues at such a young age. I also had issues undiagnosed when I was younger but i managed to have 3 gorgeous boys thanks to an amazing consultant. The consultant you've spoken to needs to fully explain about having a hysertectomy. Endometreosis feeds off estrogen, so a hysterecomty is not a cure. it often alleviates pain for a number of years, but it depends how close you are to the menopause. Endomoestreosis can produce it's own source of estrogen to feed off, so even if you have everything removed it still can return. The best method is surgically removing as much of it as can be seen, then hormonal suppressant to lower the estrogen in your body. thats also why the endometreosis diet (removing most inflammatory foods) work to help keep it in control.

I have had a fully hysterecomty myself at age 33 due to not being able to take any more hormonal treatments, so please don't think i'm anti it. But please don't underestimate going into full menopause at a young age. I have heard a number of women being given a partial hysterecomy, which is basically pointless as the ovaries are still producing the estrogen feeding the disease.

In case you do feel it is necessary, please have a look on hystersisters.com it's a US forum about hyserectomies and even has a whole section on endoemtereosis. Just make sure you have all the facts, and don't let them leave the endometreosis in your body un-treated until you want children. Otherwise you may find when you want them, you can't. I met a lovely woman age 42 who was now having part of her bowel removed as they hadn't treated the endometresosi and she wasn't in as much pain as others, so it had been left and had adhered to the lining of the bowel and her bladder. It's a truly evil disease.

we all get so much contradictoy information, i really hope this is helpful not confusing and truly wish you every success xxx

tiger-cub
tiger-cub in reply to Abbbb

Hello thanks for coming back to me well I guess mine is quite complicated that’s why probably they don’t want to touch it as of now before I finish my family planning . No not at all I agree hysterectomy is not a complete guarantee but it’s one of the treatments .

Yes I’ve tried everything you can thing of to control my disease and symptoms. And have been trying ivf’s too .

So just praying now that I can have children like you and then make the decision what is best for me as regards to the endo.

Hope you understand.

I hardly write as I get so depressed.

Abbbb
Abbbb in reply to tiger-cub

I totally understand, im so nervous about giving suggestions on here as you never know someone's full story and whether you are actually helping or not. I'm glad you have a plan, i wish you every possible success with your ivf. we had our first two but only after 3 losses, but our last was our miracle last ditch attempt. My consultant removed stage 3 endo and fixed both twisted ovaries, and said if we wanted another one it was now or never. I only mentioned about the treatment as I would not have got pregnant if they had left the endo in place as once she went in, she found it was inside my falopian tube which obviously didn't show up on any scan and so i would never have got pregnant.

dealing with the condition is exhausting in itself, i find this forum quite hard sometimes as well, so many women are going through so much and there's so little support. I'm currently pain free for the first time, and eveni find it hard emotionally going through this site, but i just want to try and help if i can based on the lack of support and information ive had previously. There's also so much mis-information depending on the level of consultant you go to. I've done 20k on my surgeries all private as I wanted a specialist and our nhs trust only guarantees you a gynecologist whereas we all need endo specialists.

good luck again, and if god forbid you go down the hysterecomty route, i would be happy to listen xxxxx

Your not a fraud. I was told you can have lots of endo and not feel much pain, then on the other hand, not have much and be in constant pain, which was like I was.

Rollipo
Rollipo in reply to Marlie3

Thank you so much Marlie3. I appreciate any input from your experience. Thank for taking the time to reply to me xx

I completely agree with the other ladies that have already commented.

Sadly there is not a cure and the pain is different for everyone. And it most definitely is not in anyone’s head.

Also after surgery you have take time to heal as well. The scar tissue may now cause you pain and they may have left some endometriosis tissue behind due to its location and the experience of the consultant. This will cause issues/pain.

I have have had it for 27 years, I’m now 43. Its being managed and at the moment it’s the best it’s ever been regarding pain but that has been a long journey of trial and error (and 3 surgeries). Lots of listening to my body and researchIng what other people are trying to see if it works for me as well. It’s a constant plus I always have a hot water bottle near just in case!

If you see those ladies at work you might want to give this site to them so they can update their knowledge 😊

Rollipo
Rollipo in reply to BlueSky20

Thanks very much bluesky20. I am glad you are in a good-ish place so to speak at the moment but sounds like you’ve been through the mill!

Thanks for your advice, I feel more and more validate everything time a comment is made to my question. Thank you again x

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