Hellooo,
I have been refered to see a fertility specialist at my local hospital. I have been diagnosed with endometriosis stage 4 (stage 4 as i have bowel endo, although my surgeon says the endo is not horrific its the nodule causing the stage 4 diagnosis? Confusing i know 🙈). I am ovulating as my progesterone came back at 30, my tubes are clear and my hubbies test was normal.
I was just wondering what questions i should jot down to ask them? Where is best to start?
Thank you for your help 
If you ask Diane the nurse on here she will email you a list of questions that you can ask or might be of help to you xx
Hi Emma_16x. You can email me in confidence to support@fertilitynetworkuk.org and I will send you a list if you want. Not back in office till Wednesday 19th but will sort it straight away. Diane
Thank you so much i will have a lovely easter!
Hi Diane
I'm in a similar boat, would it be ok to email you too x
Hi Jacs0008. Of course. My email address is support@fertilitynrtworkuk.org will be back in office on Wednesday. Diane
I think others will cover the list of questions u need to ask, however, just a note regarding the nodule issue - v important to find out where it is. I had severe stage IV endo, my nodule (area of deep seated endometriosis which lay undiagnosed for years) had buried into the back of my cervix and affected the left ureter too (tube running from kidney to bladder) and managed to implicate the uterine artery. It was a real mess. Not only did it cause a lot of damage but 2 surgeons were not happy about even trying to remove it as it involves so many things stuck together. a great deal of my pain eminated from the very spot the nodule was. Only when I saw a very specialist surgeon who managed to successfully remove the nodule along with a radical removal of the endometriosis which had reappeared after other surgeries, did I see some improvement in pain. Also, from a fertility point of view, my nodule caused me big issues when it came to IVF as it stopped the surgeons accessing one ovary as the ovary was stuck to the nodule and too risky to try and access it without affecting the other organs stuck to the nodule. It meant related ivf where only 50% of my eggs were collected which was v demoralising. Very difficult to see module without a laparoscopy - mine showed up on an MRI as it was a big area but sometimes Its not clear from any type of scan. Defo try and find out more and if it implicates other organs. With my endo being un-diagnosed for over 15 years it caused untold damage. Good luck seeing your consultant x
Thank you for your reply.
My nodule is 9cm from the anal verge and is 5cm and has infiltrated 50% of the bowel lumen. The mri says it has not affected my ureter. But i also have a further 2cm mass infiltrating the vaginal wall so he reackons this is the nodule gone through both sides so will have a full thickness vaginal excision too.
My surgeon said once he performs the lap he will see how bad its affected the bowel and will do a shave/bowel resection.
My main concern is fertility as weve been trying for 2 years with no luck. He told me i will have a better chance after surgery. My left ovary is stuck to the pelvic wall but my right side is fine.
How are you getting on with things now? X
Yes, you'd definitely have a better chance post surgery, these nodules are awful tho and bury in & can do a lot of damage, sounds as if you have a good surgeon to tackle it. All my left side was stuck down & in a real mess (usually find with endo the left side is always worst!)
I tried ivf twice after endo excision surgery but the nodule was still there for those attempts & I noticed symptoms came back 6 months later & the endo took over again despite surgery, then had total peritoneal excision in Yorkshire which helped a lot pain wise & a year and a half later in a better position than I was after previous endo surgeries st least. Tried ivf again 3 times 6 months after TPE op but no luck unfortunately and all that ivf really aggravated and inflamed things again so in hindsight not a great thing to have done when still recovering from major surgery, so something to bear in mind as the ivf did put my recovery back a lot. No further pain from nodule at least now that was finally successfully removed.
Difficult to know with fertility, I had undiagnosed endo for so long I think untold damage was already done by the time it was properly addressed. I tried ivf between the ages of 39-42 and got 6 eggs each go but none grew past day 3. Looking into donor egg route as a next plan as think that is now only option given my age and damage from endo. Also got a few other auto immune conditions & a lot of inflammation so v much doubt I'd have any luck with my own eggs.
Guess it depends if you have age on your side with regard to fertility. My Yorkshire surgeon who dies amazing work has seen baby success with a number of his patients who had v serious endo, but age is one a big factor.
Good luck with everything x
So sorry to hear you have been through such a struggle. I hope that using donor eggs gives you your little miracle. You sound like you certainly deserve it!! I am 27 this year so if ivf is needed after surgery hopefully age is on my side. Wishing you all the luck! X
I've got endo (although not sure what stage etc as a general gynaecologist did my surgery and told me he got it all and recommended a hysterectomy as a cure grrrr). Didn't get another lap as we went straight to ivf due to my age.
No mention of the endo throughout my ivf treatment at all. My remaining ovary although stuck to the UL was able to be accessed just fine for egg collection.
Did get some pain on my left kidney in DR and stims and hoping there isn't a whole host of issues waiting to be resolved by a proper specialist.
Hubby's swimmer sample came back as OK from gp tests but the clinic redid them and said they weren't good and we needed icsi.
Had a bfp first ivf round and currently 7 weeks. Take that endo!
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