Doing Nothing

[Tulip1983]

I'd be really interested to know if anyone has opted to do nothing about endo after getting a diagnosis. Would you be willing to share your experiences?

[JoBTW74]

Hi Yes I decided to manage my endo with mini pill. The operation for me had high risk of colostomy bag etc. this is something i was no prepared to change. So the pill and painkillers when necessary have got me through.

I think it depends on your situation, if you want to have children etc i already had one child so wasn’t looking to have more.

Hope you find what works for you, I feel it’s about weighing up the risks and outcomes you are looking for, wishing you all the best x

[rumpelstichen]

I decided to do nothing, but I'm asymptomatic.

[Moon_maiden]

I was diagnosed at 51, I’d ignored the bad periods all my life up until things got so much worse and pain everyday. I’ve had five operations since 2020 and still left with abdominal pain that no one can tell me why. This may be damage from Endo to the nerves, it’s been suggested.

That’s my experience scaled down. If you have questions please ask.

[Tulip1983 in reply to Moon_maiden]

I'm so sorry to read this, Moon_maiden. This definitely makes me wonder if it's better to take drastic action now rather than wait for things to potentially get much worse.

[Moon_maiden in reply to Tulip1983]

It’s something to consider, it’s really hard to know what to do, I don’t know what went wrong as I thought I was getting to menopause but instead of getting better I got worse. At the hysterectomy the surgeon had to put my organs back to normal positions before he could take things out, I had adhesions/Endo all over. Although he avoided bowel adhesions, but that a whole different thing 🤣

It’s not so much drastic action as finding stuff out, if you haven’t had an MRI tell them you want one, don’t ask it gives them a chance to say no too easily. It’ll depend on symptoms. Personally I do regret leaving things and if I could roll back the clock I’d have ignored the dr who said have a baby and pursued things with another. I hope that all makes sense. It comes down to how it effects your life.

[Cocoacupid]

As my endo so bad I need surgery for a better quality of life as I live in the bathroom. So for me was a relief I know I will probably have to have a stoma bag but that doesn’t bother me in the slightest as my quality of life will be a lot better. I have endo that is also wrapped around my sciatic nerves so I have constant leg and knee pain as well as my pelvis and in my groin. So for me I have had to make a decision based on improving my quality of life.As I am a healthcare professional it doesn’t bother me if I need a stoma as I deal with them at work. For me to not live in the toilet will be a great improvement. If your pain is tolerable or you asymptomatic for the time being I believe you’re making the right decision for you at this time. If however your symptoms worsen which they can often do depending on what type of endo you have or what stage your at then later on you may require some intervention. I had the coil fitted in my 20 s as my monthly s were awful and I couldn’t take the pill as I was in just as much pain on the pill as I was without it. In my 30s my symptoms more severe so for me having the coil has probably not helped me much at all as I think the damage had already been done. At the end of the day you need to do what is right for yourself. Sometimes I think if they catch it and treat it early you don’t have to go through such drastic action later on . But I think you need to outweigh the pros and cons to surgery . If it stops you from later suffering badly or hinders your fertility then i should carefully reconsider. But above all do what is right for you. I wished when I started having severe cysts in my 20 s that the gynecologist I saw actually took note. All he said was he thought my body internally was fine and that I was fine and didn’t need further treatment. Little did he know he was an older man where I am now. As others said weigh up all the positives and negatives. What you do now can shape your future. Also sometimes by having surgery now. Can improve your fertility rate also. But I wouldn’t take the decision lightly have you got family you can consult with? I am very lucky to have a good support network which consists of my family and friend s they have seen how I have suffered over the years . But as I said it got to the point I could no longer function properly and it has hindered my mental health and wellbeing to the extent I was very suicidal and wanted to end it all as pain had got unbearable. Xx take care of yourself but above all always do what you want not what others want but what you want. Don’t let others sway you either way. If you have gi symptoms now or bowel involvement I would carefully reconsider as that can dramatically change and get more severe the further you go along . Don’t also let people fob you off I had it for 27 years and now at 37 nearly 38 feel more listened too that I have got a voice and I know my own body. But that hasn’t always been the case. Xxx

[Tulip1983 in reply to Cocoacupid]

I've got stage 4 endo which is affecting my bowel. The alternative to doing nothing is to have a hysterectomy and oophorectomy. I'm 40, single and have no children. I'd never thought I'd wanted children but to have the option taken away from me seems so drastic. I don't know what to do.

[Cocoacupid in reply to Tulip1983]

Aww hun I do feel for you. The next operation after my bowel surgery will be to have a hysterectomy but for me I have come to terms with that. I like the fact am an auntie and can spoil the kids and then I can give them back. I’m more of an animal lover so have recently got two kitty’s and I also have three rabbits 🐇 did have four but one passed away. I have spoken to my family about the hysterectomy and thought and thought about it. For me I would rather have a better quality of life. I know to others that may seem strange over children. I feel I did my grieving in my twenties when both my brother and sister got married and had children of their own. I suppose I had the green eyed monster for a while. But as have got older I realise some things are not meant to be for me and have come to accept that. I always had bad relationships with men and now I just want a simple life really. I think as I have come to accept things in my mind it has made a little easier. Take care of yourself xx