I had my diagnostic laparoscopy in Feb and they found fairly extensive stage 3 endo on both ovaries and pouch of Douglas (little on bladder but luckily not my bowel). I’ve been on the pill to help relieve pain and have found that it’s been working well - still painful but nothing like it was.
The doctor after the surgery said the best advice was to leave it as the pill is managing the pain and not have any surgery to remove it. I wondered if anyone has been told similar? I feel like it should be removed if possible but as my partner and I would like to have kids in a few years they said surgery can reduce ovarian reserve and to leave it be.
I just feel a bit lost having had all the waiting and diagnosis surgery to find out it’s fairly bad but then being told to do nothing! Does anyone have any advice or experience with not having surgery, or surgery and it’s impact on having children? Or success just using the pill to manage it?
This forum has been amazing and eye opening reading everyone’s experiences. Good luck to everyone and thanks for any advice! Xx
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LisaJL
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It's a difficult one as everyone thinks differently.
I guess the best thing is to weigh out pros and cons and be aware of the facts. So read up, talk and see how you feel about things. You can push for different treatment, other options, second opinions you get the idea, and we'll help you!
First point of call is look at the Endometriosis Uk site for lots of info, help, case stories, what to ask your doctor etc. endometriosis-uk.org/
Hormones may slow down growth of end so it may continue to grow or it could stay the same, the same could be said after surgery. The rates of regrowth are unique and different every time. If it grows when on hormones it will create new patches and could become deeper, this may need more invasive surgery to remove it at a later date, but symptoms may be manageable so it is an option for most women. When endo grows enough it starts to create it's own oestrogen thus speeding up growth and increasing symptoms, it's at this point most women seek surgery as hormones don't work. Surgery will need to happen at any point, this needs to be excision (cutting out) to successfully remove as much end as possible. The endo can also cause organs to stick together which results in symptoms too, the surgeon can unstick the organs. It's really only after surgery (6 months ish) that you'll know what your new "normal" aiming for about a 50% reduction in symptoms. Then depending on your situation you can manage with hormones, or nothing and just pain management.
The question of fertility; the docs can do all the looking and studying they want when they're inside you but ultimately it's a wait and see sort of thing, you won't know until you start to actually try.
Check out my experience, to see if it'll give you some thoughts. You can search for it on here.
"All this effort does pay off - my story - hope it helps !"
The main questions are:
Are you happy with your hormones?
Do you feel you can manage your symptoms?
Does it impact your life? As in do you have to skip social stuff or work because of it
What would you do if your symptoms got worse? Would you know where to go?
Consider there is a wait list for surgery of about 4 to 9 months, would you be okay with that once your symptoms get worse?
Are you at a point in your life where surgery is the best option considering it can take a lot out of you and about 4 months recovery? Some women are happy with hormones, some aren't ready to make that jump, and some want to wait until they've considered all other options as it's quite invasive.
What would be the reasons for you wanting surgery? It needs to be about you and your health, including mentally needing to be the best you can be, putting aside fertility for the moment.
What would be the reasons for you staying on the pill? This option does work and can manage endo symtoms while giving you the freedom to take time to decide.
Just remember with all of the above discuss it with your partner, as he'll have his own worries and concerns such as; how he'll look after you when your symptoms get worse, what if he hurts you during sex, what if he feels useless etc. They do worry too!
I know it's not the answers you wanted but hopefully it'll give you something to think about x
Thank you so much for such a well thought and useful reply. I think I was getting frustrated and feeling alone and you’ve given me brilliant advice and questions to consider. I find most conversations are either from people who are very unaware (through no fault of their own, just the sad case that endo is still poorly understood) or doctors who rush it and don’t dig into deeper questions such as mental happiness, how bodies differ etc.
Reading your story was inspiring and has helped me get my positive mind back. It can be easy getting caught up feeling sorry for yourself and your message has helped me remember that actually I’m lucky with my situation as many have it worse and to look at the big picture - what feels right for my body and mind. Like your story I find yoga and meditation incredible!
Thank you again for helping me when I needed it and given me the right things to think about xxx
It's so easy to get carried away with our thoughts; they are the greatest thing but at times can be our own undoing!
Hiya I’m in the same position as you, I was diagnosed with it in my ovarian fossa area and pouch of Douglas. The specialist I was seeing recommended to me that I just continue taking the pill as it was working and seemed to be doing what it was supposed to, and to delay the surgery until the time came to having a family and if I was having trouble conceiving. That way they could clear the way in terms of removing endo, as when you come off the pill to try, the endo will start growing again. He also advised to wait as there is no guarantee that removing the endo is going to help with the pain, so if its manageable just try and deal with it. Also it comes with the added risks of getting so many surgeries and building scar tissue, and also the possibility organs inside could be damaged such as your bladder or bowel. There’s so many good and bad points that your doctor should provide you with but ultimately the choice should be yours as you are the one dealing with it and you know what’s best for you x
Avoid surgery if you can! Its invasive and can cause more scar tissue. However, the pill will not get rid of the endo; it will just slow or stop the progression. It is likely you may need a surgery later but I would put it off until your pain is not managed. There are other medications other than the pill that you can try before surgery as well.
Hello, I've also been diagnosed with POD endometriosis. I had a laparascopy due to an ovarian cyst, which was not an endonetrioma. They didn't remove the endometrial tissue.
I've been on a mini pill for the last month. In my case, I have pain every day. But, still, I would first try all the alternative options before having a surgery. If I could find something that stops endometriosis from progressing, I would be really happy.
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