Deep infiltrating endometriosis

[Meadowsweet11]

Hi everyone. I just had my first proper consultation with an endometriosis specialist and after doing an internal examination and listening to my case history he found a thickened area of tissue and thinks I have ‘deep infiltrating endometriosis’ (or DIE as he wrote in big capital letters on my information sheet haha... that was encouraging!). I have to get an mri to get it diagnosed for sure and then potentially a laparoscopy although he said there would be a risk of bowel perforation with excision due to the location.

Does anyone have any experience of this type of Endo... I saw a few posts about it but would love to hear your stories/symptoms/how you are coping, especially if you are further along the journey than me.

Thanks xx

[Doglover5]

Hi I had DIE on rectum, pouch of Douglas, uterosacral ligaments etc, caused major bowel symptoms during period and some pain with deep intercourse. Do you experience these symptoms? Also really bad IBS at its worst. In fact, it actually hurt to sit down when it was at its worst, during my period!

I’ve recently had it all cut out and complete symptom relief which is great. Hope that is helpful xx

[Meadowsweet11 in reply to Doglover5]

Thanks for your reply and sorry for what you have been through. I have similar symptoms yeah... severe pain with most bowel movements during period (sometimes other times of the month too), severe menstrual pain, occasional pain during sex but that isn’t so bad, recurrent utis, etc. Also get this weird pain which is almost like wind or connected to having wind but is a sharp stabbing abdominal pain that is difficult to describe.

So glad to hear that you had it cut out and have complete symptom relief! That’s really encouraging. Do you mind me asking how long ago it was that you had it cut out? And I take it it was by laparoscopy?

X

[Doglover5 in reply to Meadowsweet11]

Had it excised in July. A year before that had lasered with a non specialist who said it wasn’t DIE. Then specialist found deep extensive endo across whole pelvis! I recommend getting to a BSGE centre if you do go for an operation. Yeah I had extreme stabbing period pains that I couldn’t sleep with and really painful trapped wind and constipation when on period. I couldn’t really eat during my period without being in pain, awful! I hope you get some answers and get it sorted. Good luck, any more questions please ask xx

[Natduke in reply to Doglover5]

Hi I've just left hospital after having a laparoscopy 7 years ago due to endo and exactly a year ago this time my bowel is stuck to my womb, I've had the pro stap injection and have to return in 3 months, today however I've woke up with really bad cramps and bleeding so I'm so frustrated as pain relief was managing it up until now I'm due to go back to work next week so fingers crossed I can!

[Meadowsweet11 in reply to Natduke]

That really sucks, sorry to hear that, hope you are feeling better now

[Hidden in reply to Doglover5]

Hi! I was recently diagnosed with the DIE and I'm glad you no longer have any symptoms. I'm going to discuss the surgery option with my doctor and reading about your experience is really encouraging!

Best wishes

[Doglover5]

Just to add had my rectum shaved as it was stuck to back of vagina in a big deep pocket of endo...not actually invaded bowel but a colorectory surgeon had to attend the surgery to support rectum shaving x

[Amorgatory]

I found out i had DIE last april but havent comeback yet to my gyne surgeon. Though i dont get symptoms yet.

[Meadowsweet11 in reply to Amorgatory]

That’s interesting, was it just through routine procedures you found out you had it? I only was able to get it diagnosed after years of symptoms. Hopefully the symptoms stay away for you!

[Hidden]

Hi! I am 29 years too and was suffering from period pain for about 15 years! And my case is the same as yours. I am really sorry for all what you've been through but glad you got to see an endometriosis specialist eventually.

I have DIE too, but for now my doctor told me to start with Primolut N.

What treatment are you using now? Hope you feel better soon!

[Meadowsweet11 in reply to Hidden]

Sounds like we have a lot in common - sorry to hear what you’ve been going through too. I was finally ‘officially’ diagnosed with DIE today after the mri scan results came back, so now at least I know what I’m dealing with but it has been such a rough journey to get to this point. What is Primolut N? I haven’t started treatment yet but they want me to go on the pill temporarily (which I’m reluctant to do because of previous problems with hormone treatment) and then get a laparoscopy. Have you had a laparoscopy and mri scan?

[Hidden in reply to Meadowsweet11]

True that!

Primolut n is a hormonal pill which puts you in a menopause state. But to be honest I'm not feeling comfortable with it at all. Had a previous horrible experience with provera pills and the same scenario is happening again (bad, annoying side effects besides bleeding)

I had a transvaginal ultrasound and the endo was obvious, a large lump, behind my uterus and starting to pull my left ovary behind the uterus too. Also they found a cyst on the left ovary.

Not feeling satisfied with my current situation and I asked to see my gynae after two weeks.

[Meadowsweet11 in reply to Hidden]

That doesn’t sound fun. You’re definitely right in speaking to your gynae if you aren’t happy with your treatment plan... I’ve found I’ve had to be pretty assertive and forceful (which doesn’t come naturally to me!) in this Endo journey as if you don’t speak up when you’re not happy with something then nothing changes. I hope you get a treatment plan which works better for you. Are they not going to do a laparoscopy?

[Hidden in reply to Meadowsweet11]

Yep! You should stay assertive and sometimes nagging concerning your endo situation and as you mentioned to speak up and say how you truly feel.

Well, I called my gynae secretary and I left a voicemail explaining everything. They should be calling by tomorrow and when I see her again I'm going to discuss the lap option.

[Meadowsweet11]

Update - got the results of my mri scan back today and it showed results in line with deep infiltrating endometriosis. So pretty much a definite diagnosis, finally after about 13 years of searching and pain! Feeling relieved in a way that I’m not crazy but also really anxious and disappointed. Trying to stay positive but it takes a while to process. Also mri showed swelling and blood in my left Fallopian tube, has anyone else had this?

[Hidden in reply to Meadowsweet11]

The good thing that you know it's not just in your head and you finally got there. I know it's hard to keep positive but hopefully you will make it through.

Didn't they tell you anything about the swelling on the fallopian tube?

Wishing it all turns well with you.

Hugs. xx

[Meadowsweet11 in reply to Hidden]

Thanks no they didn’t tell me anything about it really except that it is something that can happen with DIE. I’m having a meeting with the nurse soon to ask some more questions as I was a bit overwhelmed when I got the diagnosis, so I’ll try to find out more then. Xx

[Hidden in reply to Meadowsweet11]

Good luck hun! Hope you get the right answer 🤞

[Meadowsweet11 in reply to Hidden]

Thank you! Keep us updated on your situation, hope you get some answers from your gynae.

P.S. Where are you based? I’d love to find some face to face endo support groups, especially ones that focus on DIE if there is such a thing....

[Hidden in reply to Meadowsweet11]

Thanks and sure thing!

I live in the Netherlands, but I joined here cuz an English speaking community.

It would be nice if we could meet or to find supporting groups!

Maybe you can find here events or such things about meeting in person.

xxx

[Meadowsweet11 in reply to Hidden]

Thanks, yes I hope so!

[Fran77 in reply to Hidden]

Hi Sam-05,

I also live in the Netherlands and Ive also been diagnosed with DIE. Would be wonderful to meet someone based here going through the same process. I'm currently on Lucrin, been so for the last 12 months🤯, I'm in terrible pain and have just gotten home from the neurologist, as there seems to be no solution for my chronic nerve pain, as I'm not longer responding to nerve blocks. The DIE is in, pouch of Douglas,bowels, both ligaments and also 15mm into the tissue in my pelvis on the right side. I've been told that surgery is too risky and the the risks outweigh the benefits, I've asked for a second opinion at another hospital now.

[Hidden in reply to Fran77]

Hi Fran,

So sorry for all the hardship you're facing. It is really not an easy situation.

It would be really nice meeting you! 😊

I tiried many hormonal pills, but none helped improving my symptoms, on the contrary they made things worse 😣

I hope you find relief and answers soon! 🤞🏻

[RicEndoUK in reply to Meadowsweet11]

Hi Meadowsweet11,

I don't know if you are aware but Endometriosis UK do run support groups where you can meet others face to face.

You can see if there is one near you here:

endometriosis-uk.org/find-a...

Hope this helps!

RicEndoUK

Volunteer Moderator

[Meadowsweet11 in reply to RicEndoUK]

Thanks so much, will have a look