Stims make endo worse for anyone?

[Emmyeve]

Just wondering if anyone on here has any experience with taking stims with endo and or endometriomas?

Did you notice any difference whilst on them or afterwards?

Both consultants I have spoken to say it makes no difference to endometriosis or endometriomas whatsoever, but I’m speaking to women on my endo online group & some say it brought on cysts, increased cyst size, flared endo pain.

I will be on the highest dose so I want to be fully informed before I pump all those hormones into my already hormone imbalanced system!

[emmab178]

I think mine flared up and i was on the max dose. Got through it with resting, hot water bottles and a electric blanket and knowing it was for a week and not letting the disease beat me. Wasnt constant though, maybe the last few days

[Emmyeve in reply to emmab178]

I don’t understand how they can say, with no uncertainty “it doesn’t make any diff to endo”

It’s crazy to me how they say things with such confidence, instead of “well there’s always a chance”. The consultant I saw today tried to waffle saying you already have oestrogen in your body anyway. What???!!!! 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️ It’s ok to say “I DONT KNOW”

[emmab178 in reply to Emmyeve]

Well that's Drs isn't it. I asked what consideration they have of endo during treatment and the answer is they don't but he waffled so i just stopped asking. As long as nothing is obstructing the access to the follicles for EC they are happy.

[Emmyeve in reply to emmab178]

I mentioned the endometrioma to the private consultant today & he said if I accidentally caught it during egg collection, I’d just give you antibiotics 🙈

[emmab178 in reply to Emmyeve]

How reassuring

[MissSaoPaulo]

Can't help with your question but so exciting you're finally getting there. Hope it all goes smoothly so you can start soon xxx

[Emmyeve in reply to MissSaoPaulo]

Thank you 😘

[Robins53]

Hello, I’m on day ten of Meriofert the highest dose of 450 as low amh. I’m on the long protocol so before stimms had 3 months of Prostap injections which Is supposed to keep the endomtriomas at bay. I had quite a lot of unpleasant symptoms on Prostap and before I got diagnosed with endometriosis at end of last year I was symptom free. I havent noticed much since being on stimms apart from being tired, bloated and some aches but not felt anything painful yet.

I find a lot of the advice is bizarre and there’s a Gap between fertility specialist and endo specialist. I had a lot of advice to remove my endometrioma which I’m glad I did, but nurse at scans have confined I won’t be getting any follicles

From that ovary where I had the large endometrioma removed.

Good luck to you

[Emmyeve in reply to Robins53]

Thank you for your response & your response on your own post. I think we are in similar boat. Hopefully my left ovary steps up too as my right ovary maybe stuck down in POD with the cyst on it. Keep us updated on how you get on. I have everything crossed for you 🤞🏻

[Robins53]

Thank you I will and thanks for your support 🙂 So far am happy with four follicles responding 🙏🏼 Everything crossed for you too 🤞🏽

[Bluetop1981]

Hi,

I have endometriomas on both ovaries, and am on my second IVF cycle - again on the highest dose too.

During stim, I swear I can feel my ovary/endometrioma/something poking in me. It’s more uncomfortable than painful. I do wonder if people who don’t have endometriosis can feel this or maybe it’s all in my mind 🤷🏻‍♀️.

After the first cycle, one of my endometriomas grew - I only know this from a NHS u/s report following OHSS. I went to my endo consultant who also works at the fertility clinic I changed to for my second (current) cycle. Both he, the doctor who did my ultrasound and my fertility doctor said IVF is unlikely to have caused it to grow. It had probably already been growing since the last time I had them measured. I found the answer strange as it contradicts so much on the internet (and which is why I asked all 3) but they’re the experts I guess... It hasn’t caused a flare in pain or any noticeable symptoms aside.

Good luck with your cycle!

[Kirmie]

Mine was most severe during down reg and seemed to settle when Stimming. I had the worst endo pain I’ve ever experienced when I had my withdrawal bleed after the pill on long protocol. Its must be the only reason why.

[emmab178]

Actually me to. The period after down reg was horrific first round. But then second round it was lighter than normal.

There is so much unknown on endo.