Deep Pelvic Endometriosis - Treatment Query

[Laura90210]

Good morning everyone.

It’s my first time posting here, but I’ve been reading through the threads and you are all amazing for supporting each other in the way that you do.

Here’s my story in a nutshell:

+ Rushed into hospital 13 years ago with severe abdominal pain.

+ Ended up having a laparotomy.

+ Spent last 13 years in moderate pain, but have become very used to it.

+ Had MRI this month, results show: Bilateral ovarian cyst and deep pelvic endometriosis.

+ Specialist says that due to the severity, she is referring to another specialist who deals with advanced endometriosis cases.

So I’m waiting on that referral appointment.

Whilst I have some pain most days, I do feel like it’s manageable. In your experiences, do you think this kind of diagnosis does *need* surgery? Or is it appropriate, if your pain is tolerable, to not have it?

I’m very anxious about the surgical risks and potential to make matters worse. I wouldn’t say that endo pain runs my life, it’s something I’ve learnt to manage.

My fiancé and I do want children though, but are perhaps prepared to accept that we can’t do it in the traditional sense. Rather than try, and in turn make matters worse.

Your thoughts would be massively appreciated.

Have a great day!

Laura

[Laura_T]

Hi. It defiantly sounds like you need the surgery. Even though you can tolerate the pain doesn’t mean that it’s not causing damage inside. I’m pretty sure the deeper the endo the more severe it is. Some ladies with mild endo can suffer with extreme pain most of the time, whereas some with severe can only suffer when having a period.

With any surgery there are risks but they are a small percentage. They have to inform you what the risks are before going ahead.

It’s scary but it’s needed. If you aren’t sure about this I’d defiantly speak to the consultant you seen, maybe go through to the secretary. Also if you do want children then you need this sorted. My friend couldn’t conceive and she had lap to remove the endo and she fell pregnant not long after. It’s almost like the clear out helped her. So there is hope. I hope this helps you xx

[lou002]

Hi - I have/had grade 4 DIE, with Endometriomas, frozen pelvis, I was riddled! But my symptoms weren’t too bad so was only diagnosed at an advanced stage. My (BSGE specialist) surgeon was very much going to be guided by my symptoms rather than severity, in determining treatment, so operation not inevitable even for severe cases. Risk is it grows into organs eg bladder, bowel, so future operations become more risky. And also may impact fertility in many ways, so that’s also a consideration and may lead to a decision to operate. It’s an unpredictable disease, so treatment is often a balanced judgement call. The surgeon should talk you through all of this. It sounds like you’ve been referred to a BSGE specialist centre, which you should have been, but worth checking.

But also worth noting ... he was only guided by symptoms up to a point with the Endometriomas (if that’s what your cysts are), as the larger they get, the more risk there is of rupture and other issues, so surgery is more indicated in those cases. For me, mine got so big (10cm) the pain was no longer tolerable, and it had obliterated one ovary, also grown through bowel and vaginal wall. Whole ovary and both Fallopian tubes needed to be removed as well as part of vaginal wall (nice!). Bowel bit is still there so will wait and see on that. In hindsight, earlier diagnosis and operation would have been better for me!

[BeTheSunshine]

I’m in the same situation. My symptoms are bad but manageable and I am anxious of having surgery when there are risks and I could just stay as I am. It’s never been questioned as whether to have op or not, I’ve just been sent straight through. Not sure if that is because it’s severe and active so will be getting worse as one of the ladies has described above, or whether surgeons do surgery so just go for it. I don’t feel like I have the information I need to make an informed decision 🤷🏻‍♀️