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Endometrioma & Endometriosis

(7 Posts)
Hobbes39 Tue 24-Oct-17 11:34:38

Just wondering if anyone who has been diagnosed with either an endometrioma or endometriosis can tell me more about how t can inactive fertility?
I’m on my 3rd fresh round of IVF and just had day 6 stims scan and doc saw a small endometrioma - never seen before.
She said that it’s nothing to worry about at the moment as it’s small, but is caused by endometriosis, which I’ve never been diagnosed with.
So I guess what I want to know is has anyone had one of these chocolate cysts (alternative name supposedly) and not been riddled with endo? Could this explain my secondary infertility? Should I listen to the doc and try not to worry about it, or should I be pushing them (after this cycle) to investigate further? Thanks!

ForTheLoveOfSquirrels Sat 28-Oct-17 16:21:14

Hi there, glad I stumbled upon your post, as I very rarely read the infertility threads these days. Hopefully you can benefit in terms off knowledge from my experience, though it came too late I think to help me.

I had a similar experience, though primary infertility. I tried to conceive unfortunately quite late (39). I had one miscarriage 5 months after starting, but not a sniff after that. At 40 I went to private IVF clinics for testing etc, and requested further exploratory (laparoscopy etc that I would pay for - all private!) just to check everything out, but I only managed to convince my clinic (the Lister) once I was 41 to check if my tubes were open. They said if my tubes were clear (they were) this would be satisfactory evidence of no other issues such as endometriosis. So nothing else necessary.

The clinics all told me my infertility was undoubtedly due to age (husband's sperm is perfect) and recommended IVF. After 1 year of trying, at age 40 I underwent 3 rounds of private IVF treatment, then after a break I was back at the LISTER at 41.5 for another cycle. During this cycle a nurse during a scan commented in passing on an endometrioma on my ovary. I asked about it, and was just told blood filled cyst, likely caused by previous injury (egg retrieval). I accepted this at the time. That cycle was unsuccessful. I had a subsequent follow up with my consultant, where the endometrioma (clearly noted -and picture drawn- in my cycle notes) was never mentioned).
The next cycle after that, again during a scan when commenting on why none of the follicles on my left ovary were responding, the nurse told me " it could be because of the endometrioma. They can affect blood supply to the ovary and prevent follicle growth".
At this point I started asking to speak to the consultants. In the end three consultants (two prior to egg collection, one at egg collection) told me that the research showed no difference in IVF outcomes between women who had endometrioma removed, and those where it was left insitu (I had confirmed this with my own research). Essentially, that having the endometrioma in the first place affected IVF outcomes negatively, whether removed or not. So there was no benefit to removal (unless it grew I think over 4cm). And that due to my age there was too much of a risk trying to remove anyway, as it could push me into premature ovarian failure etc etc. So I went through with that cycle, (only one follicle grew on left ovary, all on right but exceptionally poor fertilisation rate and negative outcome).
As I happens I had just started seeing another fertility specialist (bananafish recommended) who was primarily a gynaecologist. I had done a lot of reading in the interim, which as you know in the USA they class women as having I think stage 3 endometriosis just from the mere arrival of endometrioma on the ovaries, as it's assumed by the time it turns up there, it's in multiple other places. So I asked him about the 2cm endometioma. He agreed that if I had endometriosis on my ovaries, I would have it elsewhere. He said in his experience IVF outcomes were improved after removal of endometriomas. He recommended a laprascopy to remove it. So at almost 42, I arranged for this to be carried out immediately.

Long story short, I did have endometriosis. Though not riddled with it. However he said the location of where it was, would have made getting pregnant almost impossible. Apparently all over left ovary and blocking access to my left tube. So tube clear, but eggs would never have reached it (which was apparently a shame as it was my 'best' ovary). He also showed me photos of my operation, and the left and right ovaries are far closer together than diagrams would indicate. He said that if you put eggs and endometriosis cells in a Petri dish, the eggs will die. He said that given the endometriosis on my left ovary, the right ovary due to proximity would also be affected. He thought it was likely there for 4-5years, and likely accelerated by the IVF.

Admittedly IVF (removing eggs via syringe from the follicles) is supposed to protect the eggs from any environmental damage due to endometriosis. But in my case it was causing my follicles not to grow, so IVF became pointless. Additionally, having previously had a great fertilisation rate e.g. 7/8), I now had a very low one (2/7).

Anyway, 4 months after the operation I got pregnant naturally (after not a sniff of a pregnancy for 3 years), but had a miscarriage (remember I'm 42 by now). So we will try again. But probably too late for me now at my age.

Learn from my experience. As (admittedly without knowing your age or if any male factor etc) yes absolutely endometriosis is likely the cause/ a significant contributor of your secondary infertility. The presence of endometriosis is known to impact fertility. It changes the environment, and can make it toxic for eggs once released. If you have it on one ovary, you will have it almost certainly somewhere else. Other than my ovaries, I also have some in my womb, and a couple of other more minor areas.

So yes, press for a laparoscopy. As unless you have given up on trying to get pregnant naturally, then it IS a big deal. IVF clinics in my experience get so tied up with the assembly line of IVF, that they stop considering anyone might actually still harbour a hope of getting pregnant naturally (the consultants looked at me like I was a lunatic when I suggested it).
Professor Winston has said similar - that IVF clinics should be making more effort to establish the root cause of their patient's infertiliy, rather than the blanket recommendation of IVF.

Apologies for the long post, but it's important. Obviously, I'm rather pissed off that 3 different private clinics in London said my infertility was all due to age, and wouldn't carry out any other investigations purely because I did not have typical endometriosis symptoms. This wasted 2 years (and all the associated IVF, stress and heartache). Which given I started late has likely cost me any chance of a family. My fault (met my husband late) for leaving it until 39 to try conceive, but given I was paying private the whole time, I would have expected more willingness to take my concerns seriously / more comprehensive investigations.

Get it checked out and best of luck!

RayofSun Sat 28-Oct-17 16:33:23

I was diagnosed with endometriosis when I was 24 and was advised then that I was unlikely to conceive naturally because of it. Over the years, I have had two large chocolate cysts and two laparoscopies to remove them. I have seen 3 different gynaecologists (over the many years, for various reasons) and they have all indicated that the best time to get pregnant is once you have had a laporoscopy to remove any endometrial deposits. In fact, the last time I had one (my third) was immediately prior to IVF treatment and at the recommendation of the fertility consultant. We were fortunately successful in that cycle.

Not sure where you are based but can thoroughly recommend Nurture in Nottingham.

Hope you get the result you are looking for. Good luck!

Hobbes39 Sat 28-Oct-17 20:38:46

Squirrels - thank you so much for your reply - that’s def food for thought for me.. I’m sorry you’ve been through all this & hope you do get your much longed for baby in the end x
What you have said sounds familiar - it was mentioned casually and I was told not to worry about it at the moment. But obviously I do... I I’m surprised they don’t realise how much we are all likely to worry about these things! I’m 40, so they generally have been putting our ‘unexplained’ secondary infertility down to my age - DH sperm all ok, my AMH is good for my age (15.4) but I do certainly respond better on the ovary that doesn’t have the endometrioma. It frustrates me that my ‘unexplained’ could be now explained but that the docs don’t seem to feel it’s necessary to do anything about it. since my scan I have read about it all and I have seen the same as you read - that removing the cyst could cause as much problem as it’s solves. What I do wonder though is if it’s there, then there will be other areas that might benefit from being removed. It’s actually frightened me slightly that you say it’s stage 3 endo of have the cysts.. I feel heartbroken it could be all pointless if endo is making it impossible for good embryos to survive. sad
I am sat here, due to trigger tonight, with about 11 follicles on my last scan that looked a good size, which is a much better response than I’ve had before... but scared that the quality will be poor due to the endo. If this doesn’t work this time, I will def push for lap. Thanks so much - thanks too to Ray & congrats to you x

Hobbes39 Sat 28-Oct-17 20:43:29

I should add - I’m mad at myself as I should have pushed for lap before we started this process over a year ago. I’ve always suspected I had a degree of endo, as I have such heavy periods and often v painful.

RayofSun Sun 29-Oct-17 23:25:37

Don’t beat yourself up over it. It’s wasted energy. Need to channel it towards the journey ahead wink. I have really severe endo and in all honesty am a fertility nightmare. It’s such a game of luck. I hope it works out for you.

ForeverHopeful21 Wed 01-Nov-17 16:30:38

I'm no expert but I had two endometrioma cysts removed earlier this year One was so big that they warned me that the ovary would probably have to come out too, but luckily they managed to save it. Apparently small cysts do no harm, although endometriomas are unlike other cysts in that they are solid and therefore never drain on their own.

I was told that I've probably had endometriosis for 10+ years and that it was certainly impacting my fertility. Up until that point we had been ttc for over 3 years. They said we needed to start trying again asap after the surgery as endometriomas continually reoccur and I could find myself in the same position again.

I then got pregnant the very first month of trying after the laparoscopy. I think we were very lucky and even the doctors were surprised, but it just shows how much the cysts and endo were massive impacting my fertility.

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