How was your endometriosis during/after IVF - advice for 1st timer? Scared!

[Lapinblanc88]

Hello everyone

I'm super anxious right now...

It's getting real after à year of hospital visits and filling hundreds of forms

I have stage 4 endometriosis, I'm 38 and will start a short cycle in an East London hospital this month.

Questions:

-im on 8mg Progynova for the next 5 days. Seems absurd to put me on oestrogen since I have endometriosis, right? My first scan is due next week

I have already a headache since yesterday night

- I'm petrified my endometriosis will worsen and that the pain will come back with all these hormones!! I've been on an anti inflammatory diet for 18months and most of my pains are now gone, I have my life back... Until now

- did your endometriosis, cysts got bigger during/ after the meds?

- what about new pain?

- any advice/ best practice for women with severe endometriosis? Things you wish you've known in hindsight?

It's so lonely...and frightening...

Thank you!!

[Meditationconvert]

I'm not sure if this helps or not but I had pretty bad endometriosis and had a laparoscopy with laser treatment to remove in 2015. I've definitely had symptoms of it being back - has IVF meds made it worse? I don't think so as I've not necessarily felt it any worse and I'm on 16mg of Progynova per day!

I specifically asked my consultant if the Endo would have any impact on getting pregnant and staying pregnant after Icsi and he said it should not have any effect. That being said being on the meds and I'm on a pretty brutal regime now is crappy! But we are a few cycles in now so I see it as part of the journey.

Good luck with your cycle 😊

[Lapinblanc88 in reply to Meditationconvert]

Thank you! Your symptoms worsen during the treatment? 16mg? That's enormous! Is it pre stimulation? Mine is for 5 days before the ivf stimulation...

[Meditationconvert in reply to Lapinblanc88]

No I don't think symptoms any worse and I think possibly on meds for too short a period in the grand scheme of things to really make a difference to the Endo. I have just done a FET with donor eggs so cycle a little different. My clinic does a mock cycle to see how you respond to meds and during that I had issues with my lining so Progynova went from 8mg per day to 16mg per day. The transfer went well and got a BFP a couple of weeks ago. It's early days but going well so far.

[Rehanat]

I found my endo symptoms/ pain worsened after ivf... don’t think the hormones helped one bit. Also found the same while I was on clomid. It may be different for everyone tho x

[emmab178]

I noticed increased symptoms with progynova. Problem is my clinic ignored the endo completely because they wanted me on a medicated fet. Had i got a choice i would have pushed for non medicated.

The oestrogen/progynova will feed the endo.

[Lapinblanc88 in reply to emmab178]

How long were you on the Progynova?

Maybe it's just my imagination buy today is day two and I felt 3 twinges on my ovaries...

I also just found out about this IVF doctor that has a clinic in london focusing on mild ivf ( and also much cheaper) .she claims the results are better than with conventional IVF especially for older women. There is an article on the guardian

I'll check on the stats...

[emmab178 in reply to Lapinblanc88]

I did down reg for about 4 weeks and think progynova for 3 weeks. They said if id got pregnant they would have kept me on progynova till 12 weeks pregnant. When they told me this i freaked out and the choice was carry on with the cycle or stop and start another later with a different oestrogen. Since i was only 3 days from transfer we went ahead.

Don't know how i would have coped with all that progynova till 12 wks

[KlmH]

Hi I also have stage 4 endometriosis. They found I had an extra cyst on my right ovary so 3 in total, (2 i already had) at my stims scan they also found that my left ovary was sitting high on my uterus as had a large cyst on...again that I previously had. They weren't sure how easy they could access it, this made me panic a bit, but they just said they would give me general anesthetic for egg collection instead if a sedation incase it was painful. Anyway they managed to get 10 eggs and 4 made it to day 5 had one transferred and 3 frozen. Now on my two week wait. The meds didnt affect my endometriosis or give me any pain or make the cysts grow any bigger . Good luck you will be fine!

[Lapinblanc88 in reply to KlmH]

Thank you!! Nice to hear that there was no change to your endometriosis pain or cysts

Best of luck!!

I've also got one ovary very hard to access as it's stuck to the back of my uterus due to adhesions and an endometrioma

The 2 week's wait must be so hard! But exciting at the same time...

[FutureBabyMaybe]

I did two antagonist cycles before being diagnosed with severe Endometriosis. My symptoms were escalating for 3 of 4 months before the first cycle and escalated between cycles. Post diagnosis and my second cycle they appear to be escalating again. Whether this is natural progression of the disease or it has escalated further because of the stimulation drugs it is hard to know. I’m trying a third cycle using agonist protocol this time which I have heard can be better for Endometriosis patients. Best of luck!

[Lapinblanc88 in reply to FutureBabyMaybe]

Thank you.

IVF is bad enough to also have more endometriosis symptoms...

I'm on short cycle without Lupron as they think I could over stimulate.

The Progynova is only necessary so that my clinic can time my first scan.

Right now I'm spotting

Have you tried an anti inflammatory diet? It has changed my life and my pain levels drastically.

Also my endometrioma shrunk to 1cm

[FutureBabyMaybe in reply to Lapinblanc88]

They weren’t too worried about me over stimulating as my AMH was slightly low for my age already, so unfortunately producing too many eggs isn’t my problem.

I’m looking into anti-inflammatory diets etc at the moment. Plan is agonist utilising Lupron for the moment in potentially 2 months time.

[discobec]

I also have stage 4 endometriosis. I had my first excision surgery in November 2016, but needed a repeat surgery 12 months later as my pain returned quickly. I had a 10cm endometrioma on my right ovary and a smaller one on my left.

I started my first cycle of IVF in February 2018. It didn't work and then a small endometrioma (2.5cm) was spotted on my right ovary during the baseline scan for my second cycle in June 2018. I was gutted but my consultant decided it wasn't big enough to warrant further surgery or draining so we proceeded with the cycle.

My right ovary did absolutely nothing during stims, but 5 eggs were collected from my left ovary. We had 4 embryos and one of them is my now fast asleep 17 week old baby boy. We've also got another embryo in storage.

He's the absolute love of our lives and luckily my endo symptoms haven't returned. The endometrioma collapsed in on itself during pregnancy so I'm completely pain free so far.

Good luck - hope everything works out for you. 🍀🍀🍀

[kitscat]

Have they not suggested surgery first before IVF? Xx

[emmab178 in reply to kitscat]

Depends on your age and amh result. The longer you leave it the chances of ivf working drop

[Lapinblanc88 in reply to kitscat]

I read so many pieces of research on this topic , and there is not a strong correlation between surgery for endometriosis and rates of pregnancy...or if there is it is contradicted by another research.

What I know is that there is a risk of diminish ovarian reserve, scar tissue, complications etc post surgery.

So I decided to go straight to IVF.

If this cycle fails, I will have surgery and try naturally for a year if o have managed to get some embies Frozen

[kitscat in reply to Lapinblanc88]

This is exactly what I did. So I am having my surgery in 1 week. I had a failed IVF cycle but unfortunately could only got 1 frozen embryo. There is a lot of evidence out there, isn’t there!! I have read up lots too. I’ve had an ectopic too so it’s all a bit of a mess. I’m going to try natural for 4 months following surgery then cycle again with IVF. Then is that fails go FET. My AMH isn’t great either. I’m 33 though and have managed to conceive with the ectopic so we are still hopeful at the moment 🤞🏻🤞🏻🤞🏻🤞🏻. Best of luck to you xx

[Lapinblanc88 in reply to kitscat]

Good luck for your surgery.

Try the anti inflammatory diet ( or at least remove gluten and dairy)

My endometrioma was 5cm and is now 18mm. Most of my endometriosis pains are now gone.

Will it be your first op?

[ForABabyPanda in reply to Lapinblanc88]

I've been doing anti-inflammatory, but cheating a little at weekends. The reason I started was because I had a monster period and ovulation week after having a chippy meal. Two months later I got complacent and had another chippy, and another monster period. The ones where I was on anti-inflammatory diet and had been mostly good, were much less painful than pre-op, although as I'm still recovering from op... hoping for better soon!

[ForABabyPanda in reply to Lapinblanc88]

eeeek the only reason I had my surgery was because I thought my endo was probably the reason I was infertile. Sounds like I maybe shouldn't have had it then, looks like I'm going to have to have IVF anyway as 3 months later I've still not conceived.

[emmab178]

Antibiotics don't have any effect on endo, its not an infection