Newly diagnosed stage 4

[gemarthur23]

Hi there everyone had my lap nearly 3 weeks ago and diagnosed with stage 4 endo on bowel walls tubes ovaries and maybe bladder. Consultant said she couldn't do anything then and I need open surgery I am waiting for MRI scan then will have op. Can anyone tell me what to expect? Recovery time and chances of conceiving etc? Very new and rather scared thanks in advance x

[Hidden]

Hi, I also have stage 4 endo and had removal of a very large endometrioma and excision work. I had an overnight in hospital and managed to wash + dress myself + have wee walks around the ward whilst waiting for my husband to collect me. I was very tired and a bit sore for the first few weeks and went back to work 5 weeks post op (I am a physiotherapist and my job is fairly strenuous).

With regards trying to conceive I would suggest this is a conversation you have with your gynae consultant once they have mri results and have had a good look inside.....many many women with stage 4 endo (diagnosed + undiagnosed) have children so try not to stress until you have all the facts and options.

If you have any specific questions I am happy to try to answer from my experience. Hope you don't have too long to wait for your MRI.

Sid

[gemarthur23 in reply to Hidden]

Thank you so much for your reply. Did you have it in your bowel and bladder? I have read far to much in to it already and making me kind of nervous. I work in a nursery so on my feet with little ones too so sounds like I will be off for a similar time. Hope you are feeling well x

[Hidden in reply to gemarthur23]

Yes, I had and unfortunately have again endo on my bladder and bowel. I have an obliterated pouch of douglas with my uterus completely stuck to my rectum. The uterosacral ligaments are bound down and I also have it on my sacroiliac joints and left sciatic nerve. Consultant said "it is just a mess + the worst he had seen in his 20yrs of practice"....that cheered me up no end!!!

I wish you well with your Investigations and treatment x

[Bdgjdjd in reply to Hidden]

Did it cause infertility to you or you have babies?

[Kittykat8989]

Hey,

I was coming around this time last week from my laparoscopy. I had stage 4 endometriosis on bowel, bladder was checked but luckily no endometriosis was found there. I had an obliterated pouch of Douglas and some very large nodules which were cut out. My op went very well, obviously it’s still very early stages for me but I’m pleased I had it done.

One thing I would say is you need to be mentally ready to have this done. I was in hospital for 3 nights with a catheter and a fluid drain coming out the right side of my stomach. It’s a lot for a 28 year old to take, as well as the pain of the surgery.

I’m also wanting to conceive but as I had a lot of endometriosis cut from my vagina I can’t have sex for 6 weeks. My surgeon said I had to weigh things up - pain v TTC . I felt I had to take the risk and get my pain under control.....I

see from your post you have endometriosis on the tubes and ovaries, therefore you need to stress you are wanting to conceive and whether surgery to these parts would adversely effect your fertility. There is a risk they can get damaged during surgery even if endometriosis doesn’t effect ovaries and Fallopian tubes directly.

Finally I will say... it is a major surgery. The incisions are tiny but I had organs unstuck and tissue cut out. So recovery will be slow, you also have the bare that in mind. I was adamant I wanted it done, so I accepted the risks. You have to weigh things up and decide what’s best for you at this stage of your life.

Love & hugs

Katie. Xx

[Ariyauna123]

Hi! I have had two surgeries along with a D&C and colonoscopy. I don't know if you are getting another lap, but I recommend HIGHLY doing a bowel prep just like if you having a colonoscopy. reason being, is because every time I've had surgery I became EXTREMELY constipated and it landed me in the ER because it was so bad. I had to do many enemas and miralax. I felt like I could walk around after about a week , and my surgery was very invasion and found out my endo was everywhere and was extreme. but take medicine around the clock and use a heating pad and drink miralax every day to make sure you are going to the bathroom because medicines like hydrocodone can make you constipated and will make you flare up like crazy

[Drew9]

Hi gemarthur23! Reading your story it looks like we are in a similar situation and I came on here looking for the same advice as you! Are you any further forward? I’ve been told to start trying for a family ASAP once I’m recovered but it’s all come as such a shock. How are you feeling now?

[gemarthur23 in reply to Drew9]

I am still none the wiser had my mri waiting for the mdt to contact me it's so hard to wait. I'm struggling emotionally with it all now. Just want answers time frames etc xx how about u x