Stage 4 endometriosis - new diagnosis - Endometriosis UK

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Stage 4 endometriosis - new diagnosis

Everdeenxx profile image
21 Replies

Hello Ladies 💛

For context, I’m 28 years old, never had kids, been suffering with endometriosis-like symptoms since I was in my teens, with the symptoms deteriorating in the last 3 years or so.

I’ve just come back from a consultation at Darent Valley Hospital where I’ve been officially diagnosed with stage 4 endometriosis after an MRI.

I’ve been told I have a 5cm cyst on my left ovary which could grow bigger over time or rupture, causing an acute medical emergency and potentially the loss of an ovary (which freaks me out). I have recently had a smaller cyst on my right ovary which seems to have gone away on its own without any issues.

My bowels etc. are also all stuck to my uterus.

The consultant has told me that the cyst cannot be ignored and I will need a 2-3 hour long laparoscopy where they empty my bowels beforehand (?) and I could also require a bowel bag (not sure of the proper medical term) but they did not clarify whether it would be permanent - I’m really hoping not because that’s yet another thing that would truly freak me out. But it sounds like they will also look at disentangling my insides from the uterus?? So it won’t be a “simple” laparoscopy, per say.

Because my symptoms aren’t severe enough lately (aka I have gotten very good at managing them…), I have been put on a waiting list for an op but I think the current waiting times are anything from 6+ months.

I’ve also been told that after the operation I will need to take a contraceptive pill until such time that I am ready to have kids, in order to manage this wonderful disease / prevent it from coming back.

I guess the point of this post is to say that I am absolutely, beyond petrified of the surgery that I apparently need and don’t know what I will do when the day comes. I am otherwise very active and healthy and am scared that the op will mess me up even more than what I’m going through now. 🤷‍♀️

21 Replies
Mcyizml2 profile image
Mcyizml2

Hi, I have also had deep infiltrating endo identified in the last couple of weeks. They haven’t given a stage but the MRI showed it was all stuck together in there with the exception of my ovaries, although one is stuck to a wall. I’ve always been healthy (maybe not fit 😂) and now I’m in pain and have a decision to make about surgery. I feel like you do, worried! I’m scared to have the surgery, in case it creates scar tissue and causes more trouble and because of the scars on my stomach (vein but true). I guess also I’m scared of what they’ll find and the bowel stuff. And what if it could have been managed with hormones?!? But I’m also scared about not having it and it spreading. stuck and hurting!

Everdeenxx profile image
Everdeenxx in reply to Mcyizml2

Ugh this is a classic no-win situation, isn’t it? I’m sorry to hear that you’re in pain; I’m hesitant towards surgery also because I can manage my pain easily with ibuprofen and paracetamol when I menstruate, so I’m not desperate to have it. But I’m scared to leave it to spread or worsen over time. So many decisions! Wishing you lots of strength and that whatever you decide works out for you x

Mcyizml2 profile image
Mcyizml2 in reply to Everdeenxx

Im hesitant too, I can manage it because it’s not all the time, only one week in four (although weirdly not over my period). But it’s the thought of it spreading and getting worse 😨 I’m listed but not decided…

Everdeenxx profile image
Everdeenxx in reply to Mcyizml2

Same! The idea of surgery scares me so much but I’m also afraid of what could potentially happen if I don’t go ahead with it!! Ughh 😭

kelsbels88 profile image
kelsbels88

Hi

This disease is awful. Sadly that’s basically a fact.

I was diagnosed in 2018 with severe endo (they stopped using numbers) and was told same as you, I had cysts, left ovary was stuck to tube which was twisted and stuck to back of my uterus. I ended up having surgery and to be honest I was more scared of the needles and cannula to put me to sleep than I was of having the surgery. I had really bad issues with my bowel where the endo was attached to the outside of it but was causing it to make the area really narrow so bowel movements were really painful (I passed out twice). It too was twisted.

I had my surgery I was a very complicated complex case and was in surgery a long time, over five hours, but they removed nearly all of the damage. I did lose the tube on the left side but it was so damaged they told me it wouldn’t help me anyway. I can now say that since august 2020 I have had no pain and just recently (6wks) gave birth to our much longed for baby.

I know it is a scary prospect but I do believe that those of us with this shitty disease have a level of strength and bravery that we don’t even know about. We do what we have to do to get where we want to go or the outcome that we need. You will get through it!

💕💕💕

Everdeenxx profile image
Everdeenxx in reply to kelsbels88

Thank you so much for sharing your experience - this is exactly the kind of reassurance / feel-good story I need right now. I’m glad it’s all worked out for you and congratulations on the birth of your baby! 💕

kelsbels88 profile image
kelsbels88 in reply to Everdeenxx

Thank you so much and you’re very welcome

I’m here if you have any questions I’ll do my best to reply around little one.

Also meant to say I was told I would need a stoma bag too but when they did the surgery I didn’t need one after all, think that came down to what they actually found when they went in and whether it could be sorted. 💕

KameronB_ profile image
KameronB_

kelsbels88 your story just made me so emotional, really the boost I need after a horrible flare up ❤️

kelsbels88 profile image
kelsbels88 in reply to KameronB_

And your reply made me emotional! Thank you, knowing that my story can help even one person is amazing! I hope you’re ok.

Feel free to msg me if you have any questions I’ll do my best to reply around little one 💕💕

KlP28 profile image
KlP28

Hello! Long story short, I also have suffered with periods since I was in my teens. I finally got diagnosed with endometriosis at the age of 32! Because I was rushed into hospital by ambulance in absolute agony. After a further 2 years, due to another diagnosed condition in between, I finally had my laparoscopy. 4 hours of surgery, detaching organs, draining cysts, removing the extreme wide spread endo & fibroids (leaving endo on my small & large bowel) 5 months down the line I was still in as much pain.

I truly believe if I of had my surgery at your age (28) I would be in a much better place now. My personal opinion is take the op. The endo is only going to become more wide spread, & potentially needing a longer, more complicated op.

My consultant has now started my on Prostap injections to put me into the early menopause (put everything on hold/ freeze everything sort of speak) & HRT tablets. This seems to be helping the pain, but causing menopausal side effects! What is women have to go through….

Wishing you all the best x

And congrats kelsbels88 :) x

Everdeenxx profile image
Everdeenxx in reply to KlP28

Thank you for taking the time to share your experience - my rational brain is definitely telling me to have the surgery, I’m just scared of everything that comes with it! But I will likely have months to get used to the thought. I’m sorry to hear of how much pain you’ve been through but I’m glad that the necessary steps have been taken to improve your condition. This disease sucks so much!

💕

kelsbels88 profile image
kelsbels88 in reply to KlP28

Thank you!

Sorry to hear about the fake menopause and the hrt. Hope you are getting at least a little respite 💕

A good surgery is a marvellous thing and a gift 💝 once you can get your head around it. In amongst that understand the utter shock of where you find yourself and trying to get your head around it all. It’s a lot to take in and I don’t think anyone would willingly ever want to choose surgery in a million years. For me it’s about finding ways to let go of the bits I can’t change, accepting I need help and recognising which bits I can control and mediate the best outcome for myself. Each of us has different situations but I know if I have information, am doing certain things to help myself where I can and look after myself for the long term beyond surgery that always is a win. Helps with the dark days and fears. This is a chronic condition that we need to cherish ourselves through. Support, community, good stock of distractions, self health care, loving the mental health side and utter kindness. You’re not alone endo warriors are here for you x

Everdeenxx profile image
Everdeenxx in reply to BloomingMarvellous

Thank you so much 💕💕❤️

HortC11 profile image
HortC11

Hi, I’m sorry to hear you have been given this diagnosis. I know it is a lot to get your head around. Obviously the decision on surgery can only be yours but my advice would be, if there is something the doctors can do to improve your situation, even if you’re not really feeling too bad in terms of pain etc. I would take it. I was only diagnosed with severe endo after struggling to conceive. I had symptoms since the age of 20 but the doctor I saw then was quick to dismiss it & so I just put up with it. Because I didn’t suffer much pain I didn’t think much could be wrong. But it’s now been confirmed that I have endo & adeno, cysts on both ovaries, uterus is stuck to bowel & both tubes are damaged. I’m now waiting surgery & going through IVF. I’m 35 now. Endo can have a major impact on your fertility if left untreated & so if you think you’ll want children in the future then doing something now could really help you.

Good luck with it all x

Everdeenxx profile image
Everdeenxx in reply to HortC11

Thank you so much for this and I’m so sorry to hear of your struggles. This disease is awful. I’m definitely leaning towards surgery, I just need lots of reassurance so thank you once again and I hope that your treatments are successful. All the best x

girli1111 profile image
girli1111

Hello, I just wanted to say, if you are not yet under a specialist endometriosis centre then please get yourself referred now before you make any surgery decisions. Im much older than you, so fertility wasn’t a concern for me, but I had amazing care from a specialist endo team following bad experience under general gynae. I had/have deep infiltrating endometriosis, stage 4. I was warned about potential for temporary colostomy before my surgery, and that frightened me, but wasn’t needed. Best of luck

Everdeenxx profile image
Everdeenxx in reply to girli1111

Hello and thank you - I feel like I am in good hands with my Consultant as he has had advanced laparoscopic training and the clinic I’m under specialises in endometriosis, I believe. I’ve also spoken to a couple of girls who’ve had procedures done at the same place and they speak of it very highly. I will seek a second opinion from a private endo specialist just in case, but otherwise I feel well taken care of at my clinic. Thank you! x

girli1111 profile image
girli1111 in reply to Everdeenxx

I’m glad to hear that you have good faith in your consultant. In which case no need to pursue a further referral. My first surgery involved the burning off of endo I believe, and was horrific. The second experience involved 6 hours of ‘excision surgery’, and was entirely different and I now have no symptoms whatsoever.

Everdeenxx profile image
Everdeenxx in reply to girli1111

I have double checked and I am already under an accredited specialist centre! Thank you for the advice and I’m glad it’s all worked out for you 😊

girli1111 profile image
girli1111 in reply to Everdeenxx

That’s brilliant

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