Endometriosis diagnosis and dienogest

[ForestChase]

Hi, So I had a diagnostic laparoscopy yesterday and the surgeon found endo between my uterus and rectum in the pouch of Douglas. They weren't able to remove it all as some was on my bowel and will need a bowel specialist in a future surgery. They've staged it between stage 3 and 4. He also mentioned that I have 'bulky' ovaries (there were 2 cysts that were removed) and a tilted womb. Feeling a little overwhelmed because I had pretty much convinced myself that they wouldn't find anything. They also removed my mirena coil at my request as I wanted to know what it has been masking all these years.

I'm due a post-op appt in 3 weeks and he mentioned prescribing dienogest to manage symptoms. Has anyone had any experience with this? I'm just worried about all the side effects of it.

Sorry for the long post and thanks in advance! 😊

[Moon_maiden]

Hi

How are you feeling today? Gas pain subsided I hope.

Sorry you had the diagnosis, we want answers but preferably not this disease. It is overwhelming.

Sounds like you had a good surgeon who knew what they were doing.

I think I tried dienogest ages ago before diagnosis but not for long. Trouble with any of these what works for one might not work for others, very much trial and error with Endo. At least you know the coil has worked in the past. I hope this op helps 🙂

[ForestChase in reply to Moon_maiden]

Thanks for the reply! Feeling OK today thanks! Gas pain has mostly gone , main issue seems to be issues with toileting, but they gave me some meds to help with that when discharged so hopefully that'll kick in soon! The surgeon has been great to be fair, and I'm glad they didn't try and remove it all and acknowledge I'll need a bowel specialist for that in the future

I think I'll give the dienogest a go and see how I get on with it, as you mentioned, the coil has worked for me before so that's always a back up 😊

[Moon_maiden in reply to ForestChase]

That’s great you’re feeling ok 🙂 hopefully you can get the constipation knocked on the head fairly quickly. Plenty of rest, try not to do things too quickly, you have to remind yourself that you’ve had quite a bit done internally, the outside incisions are tiny so it’s too easy to forget the insides.

Hopefully it won’t be too long to get bowel sorted.

Anything can be worth a try at times.

[Pugparent]

I had a lap at the beginning of June to remove a dermoid cyst on my ovary. During the lap they found I have a hemi-uterus (it was on the MRI but not reported🙄) and also some endometriosis (again not reported on previous scans). She couldn’t remove the endo cus it was over my ureter for my kidney. At my follow up my consultant suggested hormonal birth control but I’ve tried various ones over the years and suffer side effects with them all ☹️ she suggested I try dienogest as it should suit better than other mini pills and coils etc I’ve tried before.

I only started it on Monday this week so can’t really account for any side effects (I don’t seem to have any atm) but my consultant reassured me any side effects would resolve with time so I’m keeping my fingers crossed!

[ForestChase in reply to Pugparent]

Thanks for the reply, sorry to hear they weren't able to remove it all during surgery 😩. Hope the dienogest works for you and you don't suffer with side effects ❤️

[ClaudiaGrace]

Hi ForestChase,

I agree with the whole give it a go approach. I’ve been taking it for a few years and it definitely reduced my symptoms to begin with at least. Scans also don’t seem to show a progression in the disease so perhaps it is working but it’s hard to know. Still I continue to take it because I have very little side effects, possibly fatigue but it’s unclear if that’s the medication or not. Fingers crossed it works for you.

[Tttt4444]

My doctor prescribed me this also but I didn’t take it because I wasn’t comfortable with the fact it says not to take if u have migraines with aura which I do and when I asked the doctor about this he said just take it anyway and didn’t give me any sort of explanation of y that would be ok…also does anyone know if it’s safe for smokers over thirty five to be takin this I was always told no birth control pills as smoker over thirty five…..I’m concerned about risk of stroke