What to expect?

[Lucy1906]

Hi, my name is Lucy and this is my first post.

I have very recently, hours ago, been diagnosed with endometriosis. The diagnosis came from an MRI scan where the consultant said she could clearly see adhesions on my womb connecting to my bowel. This was all without having a laparoscopy.

The consultant is referring me to MDT to set up a surgical plan, and just a plan in general about me moving forward with this.

my question is once you receive your diagnosis, how did you feel? And what came next? I have been waiting for this for 12 years so you think I would be prepared but I am most definitely not.

My biggest worry is the potential of not being able to have children, everyone or am I just overreacting?

Thank you 😊

[Sunflower2034]

Hi Lucy

I hope you are keeping well.

That’s a major step in getting answers having the endometriosis diagnosis.

My advice would be to seek a specialist who is trained in treating endometriosis.

Once you had your surgery the surgeon will be able to see where you had your lesions and take biopsy’s to confirm endometriosis via lab results.

If you are under a specialist endometriosis consultant they can recommend pelvic physio (acupuncture) alternative treatment, contact with a endometriosis nurse and nutritionist to know what foods flare off your symptoms etc. as everyone is different.

I had my surgery privately and had a dye test for my fallopians tube and ovaries to see if endometriosis could be seen there.

I have regular check ups every 6 months to identify any new lesions. However if new symptoms arise or worsening I see them sooner.

hope that helps!

[ChessJ]

Hi Lucy,

I had the opposite it wasn’t until my Lap that showed where all my Endo was. With the surgery they can either do an excision or remove it completely so make sure you go with a specialist who knows what they are doing. Which in my case they removed it all from my left, not on my right due to it all being on my tube 😫. If you’re going private it’s easy to find a good consultant, not sure what you’re doing.

I was worried I wouldn’t be able to have children too especially as I’m 36 this year so I was offered to do an AMH blood test which was for my egg count and that showed everything was fine and had a good egg count. So for a peace of mind you can ask for that.

Wishing you all the best x

[Lucy1906 in reply to ChessJ]

hi thanks for your reply sorry to hear you’re also going through a hard time. Luckily I work a hospital and I’m quite familiar with the surgeons so I actually spoke colorectal surgeon today about the process regarding MDT and surgery. He said just to see what comes from the MDT meeting and to go from there with what process will be. I am very interested in the AMH test because I also have extremely low folate for which I’m taking a high dosage folic acid tablet so that’s just like another thing to knock you down. I think the thing I’m struggling with the most is that for so long i was told I was crazy but yesterday it became official, what i always knew and now that’s it. Another bit worry is that coming out of the MDT meeting? They’ll say that there’s nothing they can do my choice I would say I want the surgery. I be cut away or ablated whatever the suggestion was and see from there. I want that surgery for that definitive answer, although I have been told that there is , I just more the truth.

[SunflowerDandelion]

Hi Lucy! I was diagnosed with endometriosis about a month ago - I only knew for sure post laparoscopy when they both diagnosed and excised the endometriosis. Mine (Stage 2) didn't show up on MRI. I suspected it was endo for a while but it was still a bit of a shock to hear it said formally. Even up to an hour before the op, I was debating whether or not I had it.

I have only just had my surgery but it has been a relief to have an answer and that they were able to remove everything. If you do go for a laparoscopy, I would really recommend having a conversation about excision rather than ablation (burning) - my healthcare providers were very clear their priority was to excise ( cutting and total removal). If you do go for a laparoscopy , there's lots of great resources online about the best things to do to prepare for it and post recovery.

Next steps for me at the moment are just concentrating on healing. I would say definitely make sure you're taking care of yourself and giving yourself some time to come to terms with everything.