I wanted to see if anyone has been in a similar position.
I have a small endometrioma on one ovary measuring approx 1 cm. This was first observed two years ago with my first fertility clinic. They were not concerned about it and actively told me not to remove it because of the risks of reducing my egg reserve. My egg reserve is already low.
My new clinic share the view of leaving it well alone. They also say its small and not worth the risk of removing it.
I have no symptoms of endometriosis. I have light periods, no pain, and if it weren't for the fact they had seen this on a scan I would never have known. I had heavier painful periods as a teenager which I now wonder about.
Our diagnosis was initially unexplained but I wonder now whether endometriosis is the cause of my fertility issues.
I wondered if anyone has experienced similar and what you did. I won't be removing it based on the advice of two independent clinics and my already low AMH. I am not willing to reduce my reserve even more (so if any of your input could bear this in mind before you post please). But is there anything else I can do?
I feel like I barely understand the implications.
Should I be taking anything for inflammation when I am doing IVF?
I know about reducing dairy and Soy although my doctor says in moderation is fine. I generally eat well but I do have treats as doing IVF long haul you have to!
Any other advice is appreciated xx
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Skittles11
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Taking turmeric/ curcumin may be something to consider. Endometriosis is oestrogen-dependent so anything that helps bring down your oestrogen levels will be beneficial. Curcumin has been shown to both reduce oestrogen levels and bring down inflammation, so it’s considered a beneficial supplement for endo.
Important to note though: oestrogen is important for growing your uterine lining, so you’d want to stop taking turmeric/ curcumin ahead of starting any cycle. I’t’s prob most beneficial to take in the months between cycles.
Hi, I have two endometriomas slightly bigger than yours both in just my left ovary measuring 2.4cm and 2.7cm. Absolutely your clinic are right don’t remove it can strip your egg reserves. Despite my endometriosis diagnosis I have 2 children from my first round of IVF ( both transfers working first time) I was 35 at the time. So don’t let these cysts scare you into thinking they will impact your chances. Best wishes x
Thank you Sunset. It is good to know that endometriomas did not prevent IVF from working for you. That is reassuring. I do have a few other issues and quite a complex history of unsuccessful treatments but I wanted to ask specifically about the endometriomas as I felt there was lots I don't know about this xx
Hey Soccer. Thank you for this suggestion. I didn't know that these could be helpful in terms of reducing oestrogen levels so this is really helpful. I feel like I know absolutely nothing about managing it especially because it gives me no painful symptoms. I will look into a supplement, I assume either turmeric or curcurim, not both? Thank you also for highlighting that it's best to stop before starting a cycle as again I wouldn't have realised this by myself. Xx
Heya, glad to help. And sorry if my previous message was a bit confusing... But yes, you would only take one or the other, depending on preference. Curcumin is a plant compound that's found in turmeric, and it's the main reason why turmeric is often considered a superfood. (You can find some supplements that are just isolated curcumin and some that are whole dried turmeric. Personally, I take CurcElite mara-labs.com/products/curc... which is a bioavailable curcumin supplement.)
You could also consider taking sulforaphane, which is another plant compound derived from broccoli sprouts. There's a bit less research on it with regards to endo (though there are some promising studies), but it's known to help balance oestrogen levels - decreasing the 'bad' estrogen levels and increasing the 'good' - and it's a very potent anti-inflammatory. It's safe to take in combination with curcumin and they actually have a synergistic effect when taken together. (I take the BrocElite product from the same company as above. I don't work for them, promise! They just make good products.🙈)
I have the same as you, in that I was told I had some endometrioma - I now have two cysts on my left ovary (my Mam had cysts when she was my age too - wondered if heredity).
I had one cyst in 2020, about 5cm which I had drained before they’d let me do an further IVF -
Found out I was prone to cysts the hard way in May 2019. I didn’t know I had any but I had one burst and had to go to ER - I’d say that was quite big!! It happened when I was having a bowel movement one morning. I was pretty stressed out at work at the time, I had done x3 rounds of IVF in 2018, the last one resulting in a chemical pregnancy. I going out a lot and having a few too many glasses of wine in early 2019, so I reckon it was hormones left over from the IVF rounds along with a few too many blow-outs.
I had my AMH checked in 2020 and I think it was 38.2, not sure if that’s a concern if yours, but it would suggest AMH levels are nothing to do with the cysts.
Hi Downonthefarm, thank you for sharing your experiences. It really does sound like you found out the hard way when you ended up in ER. You must have been in a lot of pain! Your AMH is very good and yes this would suggest that the endometriomas have not caused your AMH to become very low. So in my case there may be other factors at play. I think we constantly look for reasons that would explain why we are in this position don't we. Its hard being classed as "unexplained" when there will be a reason, it just simply hasn't been found.
We spoke before when you were looking at karyotype tests for yourself and your husband. I really hope you were able to get some answers on this xx
Hi lovely, yes I have endometriosis along with endometriomas. I had one removed when I was around 24 years old as it was causing me a lot of grief and measured around 7cm. Fast forward when I started IVF Many years later and I had endometrioma on both ovaries along with a low AMH 6.8 which they say was caused but the endo. They also advised it would be best to not touch it as it could reduce my AMH. First collection got 8 eggs. In the end we had 2 to transfer and 1 frozen. That frozen egg is here now nearly 8 months old so please don’t lose the faith that endo is the end xxx
That's a great outcome. Sadly in my case I think the quality of my eggs is not great and I don't know if there is much to do to improve it. I was thinking maybe the endometrioma / endometriosis was possibly impairing egg quality as I have has several IVF cycles with far from perfect results. However your story does help me see that presence of endometriomas does not mean poor IVF outcomes as a rule. It must very much depend on varied factors. Thank you xx
I have endometriosis and they found it on left ovary during lap so they removed along with ovarian drilling as i have PCOS. clinic told me not to take any anti inflammatories at all during IVF as it can affect your uterine lining thickening. It's best to go with what clinic says unless you want second opinion as every one is completely different, with me there was more benefit to destroying some ovarian tissue to encourage healthier tissue to grow
Hi Purplehedgehog87 thank you for your message and for pointing out that anti-inflammatories can affect the lining so are not a good idea during treatment. This sort of info is really useful, I am a blank canvass when it comes to knowing how to manage endometriomas when it comes to treatment. Xx
Hi I have endometriosis with endometrioma’s present , like yourself I had none of the common symptoms of endo , I had / have light & short periods & what I would say are normal cramps , it was only discovered when I started my first ivf treatment back in 2018 there was a large cyst present I was referred for a laparoscopy In 2019 which discovered it was 10cm endometrioma which they drained & diagnosed stage 2 to 3 endometriosis. Just months later back at fertility clinic the cyst had returned it was around 4cm the clinic advised not to remove it , they tried prostsap injections for 3 months to see if it would shrink ( this puts you in to a temporary menopause) , it did not shrink but it did not grow either which was good news.
Anyway long story I had 2 egg collections & 1 fresh transfer with the cyst present . It didn’t cause any interference with the treatment & I did become pregnant. ( I lost my daughter later in the pregnancy) but this was nothing to do with endometriosis. At my c section they detailed that no cysts were present & no endometriosis visible to them.
Fast forward I have recently had another trans vaginal scan & It show I have another endometrioma measures around 4cm in February hoping this won’t grow whilst waiting for fet . They have not given me anything this time for it & have said they are happy to proceed aslong as it doesn’t get to big
So like the clinics have advised to you i would not have the cyst removed as they just reoccur any way & this treatment will affect amh levels.
I have no advice on what to do to help endometriosis I’ve just basically lived with it & hoped it doesn’t cause any further issues.
Hi butterfliez I appreciate your message and I am truly sorry to learn that you lost your little one so late in to your pregnancy. Words cannot do justice to such trauma.
You mentioned your clinic put you on prostap injections to help make the endo dormant, is that the same as down regulation before IVF stims?
Ironically i have the endometrioma on the left ovary which always produces follicles and no signs of any endometrioma on the right ovary which on two occasions has shown poor follicle growth. I would expect it to be the other way round but like I said I don't think I know much about endometriosis.
It is reassuring to hear your perspective marches what my clinics have said about leaving it where it is.
Thank you for commenting and I am very much hoping that your FET is successful xx
Hey skittles , it’s exactly what I had with my left ovary ( my 2 cysts also on this and my right is as good as can ge no cysts and I have always 9 times out of 10 ovulate on my left side and more follicles and ovary volume on left than right which would suggest left ovary has the more eggs and is younger. It’s weird isn’t it. So ironic the cyst ovary house the most eggs !
Hi Skittles, I have a very similar situation to you and I also don’t know what to do.
I have 1 cyst size at 2.5cm in my left ovary. DR doesn’t recommend me to have any surgery.
I had a failed 1st cycle. On the second cycle, 5 eggs collected, 3 made to day 3 and 1 made to day 5 and it was a top quality blastocyst. Unfortunately it failed to implant.
If I am doing 3rd Cycle, I am thinking if I should remove anything which in the way - like any potential endometriosis and the cyst. Touch wood, if I don’t get pregnant anyway with the cyst there then it makes no difference if I get it removed or not.
Really frustrating! 😮💨😮💨😮💨
Good luck to your cycle and keep us updated please! Xxxx
Hey Soulbaby oh no, sorry you are in a similar position. I think maybe the advice re what to do about endometriomas is different depending on your current ovarian reserve. It is good to know I am not alone and that others are receiving similar advice and information.
I will be inclined to follow my clinics advice, they seem adamant I should leave it and I think that's a) because of my AMH and b) because it is not causing endo-like symptoms. I do worry though about its impact of preventing pregnancy. However I have become pregnant before and lost my baby for other reasons unrelated to endometriomas so I guess that means it's completely possible.
Good luck with what you decide too, would be good to hear an update xx
Thanks for your message! Good luck and hope to hear good news from you xx
Hey, I have to admit I haven’t read the other replies but just to say I’ve had exactly the same pop up on a scan recently! It was a really sore spot on an internal scan and then he delivered the verdict. Anyway I was told it won’t make any difference and we should just ignore it! Good luck xx
Thank you lovely. Appreciate it. Hope you're being able to progress with things at your end soon xx I took your advice by the way and booked a holiday to France after things went so badly in our recent IVF cycle. Some time out. And I haven't been monitoring diet or nutrition either whilst I've been away - I know I will probably then regret that but when you are literally doing IVF for the long haul it is awful to also have to give up small indulgences for years of your life! Xx
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