Stage 3 endometriosis

[Fifii]

Hi all, this is my first time posting on the ‘infertility’ board instead of the ‘conception’ board - feeling v deflated but hoping for some support I guess.

my partner and I have been ttc since October 2022, no pregnancy so far. We both had the usual tests done and everything came back normal. However, last year I started to experience horrific, debilitating pain during my period, and my periods got longer and longer. Each month I now bleed for 12-14 days.

long story short, last Friday I was finally diagnosed with stage 3 endometriosis through an MRI. my ovaries are stuck behind my uterus, and my uterus is stuck to my colon. I have a 4cm endometrioma on my left ovary, and ‘deep infiltrating’ endo in the ligaments around that ovary. Thankfully, there’s no evidence of endo on any of my other organs, and no evidence of adenomyosis either.

my specialist told me she would like to perform a robot-assisted laparoscopy. This involves 5 small incisions higher up on my abdomen compared to the typical lap. She said she would cut out of all the endo she can see, including the endometrioma.

I wonder if any of you have experienced similar?

we are so ready and desperate to have a baby, it’s all I’ve ever wanted. I’m being hopeful but realistic, as I know stage 3 endo is probably the entire reason we’ve had no luck so far.

have any of you had success following excision of endo? Should I start looking into IVF? Is there anything I can do to make this process easier?

sending you all so much love 💕

Hello! Just saw this now. I'm in a very similar position to you. We started ttc April 2022 and have also never managed to conceive. I was diagnosed with stage 4 endo at my first fertility appointment via ultrasound and also have issues with an endometrioma which is over 5cm and a blocked fallopian tube. I currently have a laparoscopy booked to removed my cyst on the 15th of March. Then after this we will then be proceeding with IVF.

It's so had when you are desperate for a baby and nothing seems to be happening, but since my diagnosis last August I have definitely found it easier to cope with. I also agree with I'm pretty sure this is why I have no conceived yet either.

I obviously don't have much information on success after surgery but I'm here to chat to if you would like!

Have you had a hycosy or been offered this?

@Cesas thank you so much for your reply!

Wow - so many similarities! I’m sorry to hear you have endo too, it’s a very difficult diagnosis to hear (even if it does help validate your feelings and experience). I agree - I have had a bit more compassion for my body since finding out, rather than feeling frustrated that I can’t do what others seem to do so easily in conceiving.

glad to hear you’re booked in for your lap, will they remove endo at the same time as the cyst? My lap is booked for 2nd march so I can let you know what to expect if you like!

Did they recommend you go straight to ivf after surgery? Im not sure whether to do the same.

my consultant said she will perform a dye test through my fallopian tubes during the lap, so I think that’s the same/similar to a hycosy? I feel like I waited so long for answers and now everything is happening so fast (a blessing, really), though it hasn’t given me a lot of time to look into anything else.

good luck for your lap!! We will get our babies 💕

Yes very similar! That's very quick for getting a lap! I've been waiting since October for mine! I agree, I'm not going to lie sometimes it can feel very frustrating but I'm pretty hopefully that it will happen soon! 🤞

Yes please do let me know how you get on! Good luck for it! 🤞They are hopefully going to remove some endo and perhaps position my ovaries better for egg collection! Will just have to wait and see what they actually do! Yes what they are doing is the same as a hycosy with the dye test!

I have been advised to have IVF and have decided to go on the waiting list partly because I'm in Scotland so I'm entitled to 3 rounds. I maybe would have waited a few months to see if I conceived naturally after surgery if it was only 1 round I was entitled too. Its such a hard decision to make, but feel ready to progress further with this journey right now!

@Cesas I’m extremely lucky that family offered to pay privately for me to have the lap. I was advised that the op through the nhs would ‘likely be this year’ but no guarantees. I feel like March is a good time to get it done - we should be recovered for the better weather at least!
have they advised how long recovery should be for you?

They’re re-positioning my ovaries too - the thought of that freaks me out a bit 😅 but I trust they must have done that loads of times before. It’s mad to think of the damage that endo causes. I’m so glad we can get it sorted. I truly believe it will lead to getting pregnant, even if it’s not straight away 🤞🏼

ahh amazing, that sounds like a very sensible decision, and I don’t blame you at all. I’m in England so I’ll have to check what I get here, I think it might only be one round? My partner is half Scottish, but I doubt that gives me any extra entitlement 🤣

I’ll let you know how the lap goes - im nervous but weirdly excited - I just want to be on the road to recovery now!

Hi!

Slightly different to your history. Hope it helps.

Brief summary:

• Stage 4 endometriosis with a 14cm endometrioma diagnosed in Feb 2023.

• Required two laparoscopic surgeries for my endometriosis due to severity. First done in March 2023 and second 6 weeks after. First surgery paid privately and second on NHS.

• When I got my diagnosis I asked for infertility referral from my GP same time as advised by my gynaecologist. He said I would need to start asap.

• Got seen by a local gynaecologist for fertility treatment to do all the initial tests in May. Had my tubes checked during my gynaecology last surgery, which helped and saved a lot of time. Did some bloods privately before my initial fertility appointment. So got signed off straight away and referred to a centre for IVF.

• IVF apt was initially Sept, but kept calling and got a cancellation for June. 💕

• During my IVF process I switched GP surgeries to a different area where I was allowed 3 fresh and frozen cycles vs 2 where I was initially registered.

And now a year later I'm currently 8 weeks pregnant, 2 fresh cycles later and 1 frozen. 💕

Hope this helps 💕

Hey! So I have stage 5 endo and I have adenomyosis. Got diagnosed back in 2015 and TTC since, I needed to have a number of surgeries and that’s mainly why it’s been so many years. I wasn’t in a position to go private, and one of them went very wrong due to a regular gynae tackling it, when really for the severity I needed a specialist. My last surgery was in dec 2019, with endo specialist in Cardiff. Took 8 hours but he really changed my quality of life, I’ve pretty much felt normal since! The plan was after recovery to go straight for IVF…. But Covid hit! I was a frontline worker and didn’t want to go through ivf with all the uncertainty we faced.

Once Covid settled down, I had 2 rounds of NHS IVF the first round failed but I feel because I had been in medical menopause for so long, then a medicated period my body just didn’t know what I was doing!
round 2 was a success but miscarried at 6 weeks in 2022 that hit me hard…. And you only get 2 rounds in Wales for IVF.

now we have just gone through private treatment and I’m super chuffed to say I had a positive test!! Currently 5 weeks and even have some in the freezer which I never had before!!

everyone’s journeys different, and you will go through your own journey. Stay strong and never ever give up!! YOU GOT THIS xx

Hi everyone, could I ask how you’re all getting on? ❤️

I had my lap to remove my cyst in March '24. Op went okay (they only removed the cyst and I kept my ovary) but I lost a lot of blood so ended up staying in for 3 days. Because of this it's taken me quite a while to recover.

We then completed an IVF cycle in July/August. We managed to retrieve 4 eggs (the ovary I had surgery on never responded to the treatment). Only one made it to blastocyst and unfortunately the transfer was unsuccessful.

Hoping to start our next cycle next month 🤞

Hey all!

Sooo after my two surgeries last year, (6 weeks apart)... I then started ivf 2 months later.

Two cycles later, (with one cycle producing no fertilised eggs) 2 failed fresh transfers and 1 failed frozen transfer. I'm currently at 37+6 today! Can't believe it. If you asked me a year ago, I was so lost and faithless in this entire process.

Thinking of you all ladies 💕🫶

Hey!

I had my surgery as planned in early March - I was lucky that my surgeon was able to remove all the endo she could see. She got the endometrioma and all the deep infiltrating endo, as well as superficial endo she found on my bladder and a few other areas.

i actually cannot believe I’m writing this, but 6 weeks after my op, I got pregnant. I truly never thought it would happen for me. Every new milestone and experience feels surreal.

I’m currently 25 weeks and enjoying every moment (even the not-so-fun stuff). Infertility has definitely left both physical and mental scars for me - I am SO grateful but so anxious.

i truly wish all of you the best of luck 💗 I hope there’s plenty more pregnancy updates soon!!

@Warrier87 congratulations! Not long until you meet your baby!

So happy for you all. I’ve been trying since 2016. Diagnosed with endo 2021 after lap. Fast forward currently in the hospital waiting to be called for my 2nd surgery. Really praying this will result in pregnancy. Was so encouraged by all your news!!

@Happyclappy22 - fingers crossed for you. Trust the process, it's tiresome and draining, but after all I went through I'm sitting with my 1 month old currently and breastfeeding her.

All that pain, emotions, appointments, IVF cycles, and operations were all worth it. Just believe and keep your faith up. I'm firm believer in that the mind and body and soul are all connected. When my stress levels decreased my IVF process was more smoother.

Oh wow, if you won’t mind me asking did you conceive naturally or after doing failed IVF or during IVF cycles 🙂also how old are you?