I've recently found I have a chocolate cyst on ultrasound, likely endo. This sort of joins some dots for me with DOR, TWW pain and pre-menstrual spotting.
I gather there are divided views on whether to go ahead with IVF or remove the endo and cysts first.
I'm particularly concerened about futher damage to my ovaries and therefore my egg reserve from surgery.
Keen to hear peoples experiences and thoughts on endo and IVF
Me 32yrs, DH 37yrs
Chronic spotter from 4DPO, Small intramural fibroids, Low AMH yet also PCO.
3 fresh IVF's - 2 BFN and 1 chemical pregnancy. All with thin endometrium 1 FETCancelled due to thin endometrium, just 5mm
FET March 2012. Low beta, just 20 at 9dp5dt and a super squinter on a FRER, doubling nicely. HB seen but measuring 6 days behind.
Scan at 7w+4 back on track. Baby born November 2012.
Back for a sibling FET July 2013 - BFP, no squinter this time 6w+6 scan shows twins, 8w+3 shows triplets. Identical twins passed away at 11 weeks and 12 weeks, cause unknown. Singleton still ok.
I don't have any answers but want to know more about how they found it and why they didn't find it earlier. I assume you've had many of ultrasounds...why is this just now being found? Was it always there or recently created? I'm confused and sorry to hear your news. What a journey!
Aww thanks Mopie Confused and sorry to hear the news is pretty much how I feel right now.
I have had many ultrasounds, typically endometriosis is only diagnosed via a lap and wouldn't be visible on an ultrasound. However, my endometriosis has now got to the stage where I have endometriomas (cysts) on the ovary, these appear differently to normal functional cysts on ultrasound.
I gather endometriosis responds to estrogen, following my IVF I have 2 functional cysts appear too (apparently common from IVF). These should pass in time. A combo of the extra estrogen from during the IVF cycle and the estrogen given off from these functional cysts has made the endo I likely had progress to the stage of endometrioma.
From what I can gather an endometrioma of 30mm like mine, score wise puts me at stage 3 (maybe 4 if there is more endo adhesions elsehwere identified via lap).
For me a diagnosis of endo makes sense, as I say it explains my spotting, my TWW pain. It also explains why I have a great chart, temp rise and progesterone draw but then ultrasound shows an unruptured follicle, as LUFS is also linked to endo. Endo can also cause general hormonal/ ovulation dysfunction too. Lastly it also helps explain my poor fertilization rate in IVF as that too can be linked back to endo.
At least, that's how it's been explained to me. Obviously it's all new so if anyone knows better/more feel to correct me :)
The thing is, I'm not sure of the point of going for a lap just to see the extent of the damage as I'm already doing IVF anyway. I gather my odds are now a little worse but it's still the recommended treatment for endo + poor reserve.
Hi Nell, sorry to hear about your diagnosis. I was in a similar situation - big endo cyst on my left ovary and DOR. We monitored the cyst for about 6 months with the hope it would resolve itself but it was just getting bigger and the ovary wasn't functioning at all anymore so eventually we did a lap to zap it. I found the lap to be very tolerable (in terms of recovery) and I was just glad to have the cyst gone and give the ovary a chance to heal and start working again, which it did. That was May 2010, we did IVF six months later and got a BFP with just one follicle (from the right ovary, of course!). In between the lap and the IVF, I did a cycle of estrogen replacement therapy and also took a small dose of DHEA. Who knows what helped, to be honest I think we just got lucky. So there is always hope. Good luck to you!
I don't have much to say except that I am so sorry. I really hope that things can get resolved quickly so you can proceed with IVF.
I also do understand your concern with having the cyst removed from your ovary- for any woman, especially one with DOR, there is a concern about the egg supply whenever the ovary is touched. Have you spoken to your Dr about these concerns? Maybe the rest of the endo could be removed and they can leave the cyst? I mean, supposedly, it is the chronic inflammation from the endo that causes problems not the endo itself (unless the adhesions are blocking or twisting your tubes or something).
I truly hope that you will get your BFP very soon.
I recently received the same diagnosis. I was also spotting, having TWW pain, and horrible menstrual cramps. My diagnosis was also made through an ultrasound. A cyst was spotted on both ovaries :(
My RE suggested doing the lap before endo, but then I quoted her scientific journal articles about how that can damage follicles, among other non-fixable side effects. She agreed with what I said, then admitted that having the lap really doesn't do much (if anything) to increase chances of IVF success and that the benefits/downfalls of it for this is very poorly understood. They tend to suggest it because having the procedure does make it easier for the RE to see the follicles and retrieve eggs.
So, I opted out of this surgery. Instead, I am doing acupuncture every week, did one month of chinese herbs designed to reduce endo, and just started a one month Lupron shot (also will reduce endo) to lead into my IVF cycle. I stopped taking the herbs when I started Lupron because, even though my acupuncturist swears it's safe, I don't want to mess with combining western and eastern medicines for something this important. Something seems to be working, because I just started AF today and, while still crampy, this is the least amount of pain I've had with a period in eons! Also, I highly recommend a cup or two of Yogi Raspberry Leaf Tea. It helps strengthen the uterus, improves blood flow, and is supposed to help with cramps.
Anyway, you have the right to refuse any treatments offered. I definitely recommend educating yourself as much as possible on all of this, so that you can clearly articulate your decisions to your RE. Some REs suggest 3 months of Lupron prior to IVF, but I've read the side effects of this drug and don't want to mess with it longer than necessary. If this IVF cycle is unsuccessful, then I may try something different for the next round.
I'm so sorry about your diagnosis. I know what a blow it is. Just remember that you are in control of what is done to your body. I wish you the best!
Thank you all
Desiree - I think we have read the same studies as your plan mirrors my thoughts. Do you mind me asking if the endo cysts have affected your reserve/ amh levels?
Unfortunately I think I might have to have a lap to get officially diagnosed (and then get healthcare funding). They don't have to remove anything though or touch my ovaries, I guess they can just look to see the extent of the endo.
Also I've been reading about it being possible to have the cysts drained, via ultrasound guided aspiration much like they do at egg retrieval (and I think it might be done at the same time).
I believe cysts will re-fill but it can make egg collection easier and make us more comfortable if we do get pg. Is this something your Dr has mentioned? I'm going to ask mine.
Sorry you're going through this...I know it's so stressful. I don't have the answers to your question above, but here's my personal experience.
I had a lap done in April 2010 to diagnose and remove stage 1, minimal endo--although slight, it manages to cause a fair amount of pain. I had gone through many doctors to get opinions, done fertility testing, and done acupuncture and other natural routes before deciding to do the surgery. I would caution against thinking they won't remove anything if you do the surgery though--I thought the same thing, and they said they almost always remove it--it's never done just to "check and see." The pain started reoccurring almost a month after the surgery--which I was pretty sure would happen. Endo just grows back most of the time.
I had my first IVF in May 2011 (13 months after the lap) and it was successful. I know the endo grew back, but it still worked. If I had to do it over, I wouldn't have done the surgery. Obviously, mine was a mild case, and people who have stage 3-4 probably feel differently. The surgery was extremely stressful for me, and although I was slightly relieved to finally have a diagnosis for the pain, I wish I hadn't put myself at risk for potentially damaging my fertility. If you do the surgery, research the doctor very very well--a well trained endo surgeon can make all the difference in the world.
Best of luck to you!
Nell - I have never had my reserves or amh levels tested. Again, I just want to go forward with one IVF and if it isn't successful then I will get more aggressive with tests and procedures. My RE did say that my follicles looked really good, so hopefully that is a positive.
I haven't heard about the possibility of having the cyst drained... hmmm, that isn't a bad idea Might have to ask her about that. Thanks for the info!
Also, I understand that endo gals may have a more difficult time with implantation. I don't think this is well-researched yet, but I can see how it would make sense. Supposedly we have a "hostile uterus." I think raspberry leaf tea helps with this, but another thing that is growing in popularity is having an endometrial biopsy. Have you heard about this? The concept is simple (and medical research has shown very positive results!). Basically, in the pre-IVF cycle, the doc just lightly scrapes the lining of your uterus. This causes it to begin healing. Something about the process of it healing helps encourage successful implantation post-transfer.
I have an endometrioma visible on ultrasound and some endometrial tissue that was found during a laparoscopy. My RE was definitive that it was better to leave the endometrioma in place rather than damage the ovary in removing it. If it were larger it might need to be removed, but mine is around 2 cm. The doctor removed the other endometrial tissue while doing a lap. Studies have shown that laparoscopic treatment improves the odds of pregnancy. I was getting the lap to treat a tubal issue I was diagnosed with, so I am not sure if I would have gotten the lap just to deal with the endo.
Did you do ICSI? My RE says ICSI is important in cases of endo because the endometrial fluid contaminates the eggs and interferes with fertilization.
Nutter - That is exactly what happened with IVF1 ! I had no idea I had endo, got 24 eggs and only 2 fertilized. Now I have the endometrioma it explains a lot for me, it's a horrible diagnosis but I am getting some comfort from everything now making sense tbh. Are you having / did you have ART treatment - was it successful for you?
I spoke to my clinic yesterday, they are just an IVF clinic, not a medical centre (though of course the doctors have practiced in hospitals previously!) and don't do laps etc so I'm a little cautious with any advice they give tbh. However, they have suggested going ahead with IVF2 with ICSI, still with the short protocol, but having the chocolate cysts drained via ultrasound fine needle aspiration (like in ER) before starting stimms. Everything I've read suggests this is the modern way of thinking and I'm comfortable with this plan.
Just have to have these horrid functional cysts disappear first!
Thanks for everyones posts - it really helps to have the support of other to 'talk' it through
Wow, 2 out of 24 fertilized must have been a huge disappointment. Am I understanding that was without ICSI? I am on stims for my first (and hopefully last!) IVF. There is no way I could get 24 eggs with my "advanced maternal age," so your numbers are worrying me. If I ended up with such a low fertilization rate, I am unlikely to end up with any embryos to transfer.
My RE did not recommend aspiration. He said it was best to leave it be. It's too late for this cycle, but I guess if we are unsuccessful I should look into that further.
If you know you are going to go the IVF route, then you can forgo the lap. Removing endometriosis may improve your chances of a natural conception or IUI, but it won't change your odds with IVF. Your doctor can work around the cyst. If you already have DOR, you don't want to risk damage to the ovary.
Silverdollar - thanks that is my logic too. The only thing niggling me is if we remove the endo would i have a chance of a natural pg even with my low reserve......but then I just don't feel I have time to risk it. If we have problems or a poor round again with IVF2 (like poor fertilization again or early embryo failure) then I might have the lap after.
Nutter - yes IVF 1 was without ICSI as we didn't know I likely had endo then. Of course it could have been unrelated and i may still have poor rates with ICSI, I just gotta chance it! TBH I suspect I was overstimulated and it compromised egg quality, 20 were mature so a 10% fertilization rate v's an avaerage of 60%. I had DOR and my antral follicle count was low-ish (12) so I don't know where they came from really.....I had 3 lead follicles for ages and we were at risk of cancellation then on the last scan there was suddenly too many to count, it was very odd.
Are you cycling soon? good luck - let us know how you get on, it's nice to follow others with similar challenges