Endometriosis and IVF options - experiences and thoughts please

[luthien]

Hey so I've been diagnosed with endo in 2017 had two laps to excise endo, that was about two and a bit years ago. I've only had minimal symptoms and my periods are regular. No visible damage to ovaries or tubes but my ovaries do have a tendency to stick themselves to my uterus.

We're not having any luck conceiving naturally for over a year now; I use an app for temp, LH tests, and cervical mucus. My hubby has had tests and he's fine. Not overly stressing about it but I'm 36 and a bit, so options will be limited. Our area only does one IVF cycle on the NHS. I've been looking up other private options and that's opened up a whole world of different types of IVF which I didn't know about, some are supposed to be better for those with endo, pcos and fibroids as they're lower in hormone doses so don't trigger flareups:

Natural / Natural Modified IVF - collects eggs during natural cycles and implants them so no hormones - may only be on egg at a time

Mild IVF - 4 to 9 days of hormones as opposed to normal 24 days - focus on quality

They have options for 3 cycle payments, anyone needed a few? I'm guessing the NHS 1 is just 1 cycle?

I've not been for a consultation yet so I'm just doing my research!

Has anyone used these as opposed to normal IVF? Does it cause flareups? Has it been successful?

[LizzieBW]

Hi farahziya,

I have endometriosis too & we've been trying for 5 years come January. I don't have any advice because I'm an NHS patient, just about to start IVF & will have our protocol within the next few weeks (covid delays). I am following this post now as interested in any replies you receive.

Are you worried if you went into an NHS cycle that they wouldn't tailor your protocol enough to accommodate your endo? Or are you just keen to understand what they 'could' do so that you can advocate for yourself when the time comes to consider protocols? Xx

[luthien in reply to LizzieBW]

Hi, let me know how it all goes, hope it's okay.

I've read the NHS route only uses standard IVF, they can change hormones to reduce any flareups / regrowth but they aren't able to offer mild IVF. I don't fancy 25ish days of injections / hormones after seeing a few friends go through it - the side effects etc can be horrible but obviously varies from person to person. I just feel the NHS route of "get as many eggs as possible" by overstimulation isn't quite the right way to go about it - just my personal view though.

If the NHS offered mild IVF then I'd be more inclined to go with it, but the waiting list times combined with only one try seems like a lot of pressure considering I'm nearing the age limit in a year and a bit. I guess I feel private would offer more chances over a shorter timeframe without aggravating my endo before the cut off of 38 years.

[Harriet_health]

Hi this is a really interesting post, we have been trying for a year with no success. I’ve been told we are not eligible for IVF on the nhs and I haven’t started looking privately as I don’t really know if I want to mess with the hormones and endo symptoms...but I had no idea there were options with IVF to use less hormones so thanks for sharing this. I’ve been inspired.

I use the tracking app and fertile signs too, I wish it would just happen naturally for us!

Sorry I can’t offer my own experience yet but I’d be interested to hear how you get on if you did go private. All the best to you xx

[luthien in reply to Harriet_health]

Hey good to know I'm not the only one!

I searched for a clinic near me and then their website said they're part of a group of clinics. I'll see if I can find the details and message you so you have something to research for ones in your area

[Rehanat]

Hi

So I have severe Endo. We struggled to conceive also and we decided to go for ivf privately through the NHS at our fertility clinic .

We had the long protocol which is supposed to be better for Endo but I didn’t have any side effects to the drugs.

Our cycle failed much to my devastation. However I ended up conceiving naturally 6 months after our ivf cycle just a month or 2 before we were due to start another ivf round.

The consultants are normally very good and will always give you the best option, with Endo natural/modified isn’t really an option because most likely it’s our eggs that are poor quality.

There are options for access ivf which u pay for 3 cycles and a refund is guaranteed if u don’t succeed. It just depends how much u want to spend .

[wanwood]

I did normal IVF, short protocol (antagonist) and I had if anything fewer endo symptoms during that cycle than a normal cycle. The drug used to stop premature ovulation (cetrotide) noticeably helped mid cycle pain and bloating, and apparently it has been used off-label to treat endo in studies, although is not usually used that way.

[LizzieBW in reply to wanwood]

Hi wanwood, could I check why you went onto a short protocol when long protocols with down regging the cycle before IVF is usually recommended as more beneficial for patients with endo? Was this your choice or a recommendation by your consultant? So good that you felt benefits from the meds as compared to your natural cycles 🙂 xx

[wanwood in reply to LizzieBW]

We started trying again after my second lap, initially naturally on a very limited time scale just to see (with the blessing of the fertility consultant) and then IVF. I had been on Prostap for 9 months before the operation, and it took my periods a good 4 months to return after the final Prostap injection. So even 9 months after the last jab I think the fertility consultant was worried my ovaries were still somewhat suppressed and put me on the short protocol, which is good for people suspected to be poor responders. x

[LizzieBW in reply to wanwood]

That makes perfect sense 🙂 thanks for your reply & sharing your experience xx