Deep infiltrating endo

[Annabel3682]

Hi everyone hope you’re well!

I’ve just been diagnosed with deep infiltrating endometriosis from the back of my vagina to my bowel I am being referred to a endo clinic to discuss surgery! I understand it’s severe but can it be left without surgery ?im only 21 and didn’t think I’d end up needing surgery till I was at least in my 60s lol! Is my fertility affected? Any advice you would be amazing

Many thanks

Annabel 😊

[A5555]

It’s definitely your choice however if they are recommending surgery, in this case is definitely a good idea to do it to prevent it from getting worse and may provide you with many answers x

[MyStar86]

It depends how much pain you and are as to if you want to go ahead with surgery. I was desperate for relief so surgery wasn’t even a question for me I’ve had 3 endo surgeries and total hysterectomy however I will say having the endo removed from the bowel and vagina did nothing to improve my pain and I had an endo specialist and amazing bowel surgeon however in my case it didn’t help because I still have the same bowel and daily pain issues.

Having excision surgery shouldn’t effect your fertility and having it removed is better than the hormonal treatments if you don’t things like Zoladex is a treatment putting you into menopause another is progesterone only which also shuts the ovaries down in time and once you stop any of the treatments it will take time to be able to fall pregnant however having endo and endo surgery does not impact fertility as I know lots of people who have had their endo removed and gone on to have children and live pain free. I was just unlucky.

Talk things through with the endo specialist and get their view on the bowel endo as they will give you the best answer about needing surgery.

Good luck and take care xx

[CryBaby91]

Hi love

First, please don't panic. You're very young still and the fact that this has been found early is definitely a good thing, so many of us go for years and years with no answer.

Fertility is not affected in every case, I can't remember the exact figures but I think it's something like 1 in 4 with endo have fertility problems, that leaves 3 in 4 who don't! I myself suffered with miscarriages, but I do have 2 lovely boys now as well. I thought for years that because I had kids I couldn't have endo, that couldn't be further from the truth! Please speak to your endometriosis specialist about fertility worries and surgery concerns, yes we all have advice relating to how WE feel about those things... But we are not doctors, so those concerns need to be addressed by the people who actually know your specific requirements and outcomes. Listen to your gyne, but make an informed decision about any treatment. Endometriosis UK have a fantastic website that is chock full of information, everything you need to know will be on there. Spend some time getting to know your condition and how it can affect you, we all get affected differently sometimes!

Mostly please don't panic, I know this might be scary. I was 21 when I started to become seriously unwell, I'm 30 now and honestly I wish I hadn't spent years panicking and freaking out haha. Breathe, take it one step at a time and just do as much research on endo as you can. Then when you decide if you want to pursue surgery or medicine, you know the full picture. Nothing is without risk, so just be aware of those and make the best decision for you. I can say that endometriosis which is left totally untreated often gets worse, so leaving it will just be putting the problem off for later. But you have every right to fully research ALL your options and decide on which is best for you personally.