I have been going through infertility and failed IVF cycles for 3 years now. I had an MRI to check my womb and they found a chocolate cyst and a few small ones in my one ovary. This was not long after a failed fresh cycle of IVF. My consultant was not concerned about this but everything online points that it is a sign of stage 3 or 4 Endometriosis. He’s not concerned as I have none of the other typical symptoms of endo, no pain, I have very light periods just 2 days long although I do spot for 1/2 days beforehand. So I suppose my only symptoms would be the endometriomas, infertility and 2 days of spotting. Would this be enough for you to think there would be cause to investigate for endo?
I would really appreciate anyones help and advice.
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Naevo
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Im sorry about your infertility and ivf. I thought I’d share my story in case any of its helpful. I found out I had endo in December by laproscopy grade II-III with adhesions on my left side, a nodule on my uterus and some on my ovary after 4 years of reoccurrent miscarriage and 2 failed ivf. None of the drs mentioned it could be endo, the last one I asked directly twice and he said he didn’t think so. I did my own research, got referred and they found it. Like you my periods are only two days and are light. But they did used to be heavy and painful when I was younger - although not horrendously so, to the point that I didn’t think I had endo until we had tested for everything else, I’d been told several times ‘all your results are normal’ and I was a breaking point, so I did my own research. Other symptoms I had, were a pulling sensation when I had a bowel movement on my period, I had a sharp very short lived stabbing pain when I needed a bowel movement on my period and when I was younger I had bloating and had a diagnosis from my GP of IBS. The big red flag that all the drs said was ‘normal’, was that my left ovary was located behind my uterus - turns out that it was endo tissue and adhesions that made it that way.
I had 6 miscarriages and 2 failed ivf, so I couldn’t continue doing the same thing expecting a different result, so I had the lap. Although I know other people with endo have healthy pregnancies. I now get a stabbing pain in my left ovary where they burnt off some endo, with my period, so we’re waiting a little while for that to resolve before trying naturally again.
If it were me, I would get a referral to a endo specialist for their opinion, as quite honestly the five fertility drs I saw didn’t have a clue about endo, outside of that it causes heavy periods and pain. Luckily I was covered by my partners private medical insurance which speeded things right up. If you’re in a hurry, seeing a private endo specialist might be the way to go.
I hope this helps. I know what going through years and years of ivf is like, especially having a diagnosis of ‘unexplained’.
Thank you so much for sharing your story. I also used to have heavy painful periods when I was young but went on the depo injections for years so I was probably masking symptoms. I put down the fact that they have been so light down to stress of ttc. I think you’re right, I will probably go private as I really need to know. I do have an NHS appointment next week but I know due to lack of symptoms, it probably won’t go anywhere. Thank you again x
Hi Naevo, I’d highly recommend looking for BSGE-accredited endo centres. These are the specialists that Olive8000 is referring to. There’s a website where you can search for your nearest centre (link is below). Do also check out the consultants’/centres’ reviews online. I ended up travelling to see one in London because he had great reviews and I liked his multidisciplinary approach to treatment.
The problem with endometriosis is the severity of the symptoms often doesn’t correlate with the severity of disease. I haven’t tried for a baby, so I can't share any experience on that, but when I had my excision surgery I didn’t have the horrendous symptoms other people do and yet I my level of disease was classes as severe. I did have an endometrioma as well which I think more often than not is associated with endo.
It’s best to see a specialist and get their opinion. Good luck, and I hope your next attempt at having a baby is successful!
I too had the depo for years in my 20s, which also resolved my symptoms, so I when you look back your memory is kind of distorted. What I’ve also been thinking is if my periods were plane sailing at that time, I probably wouldn’t have had the depo anyway.
Good luck with everything, it’s definitely the right thing to get investigated properly. I hope you’re able to find the root cause of your fertility problems and resolve them, so you can welcome your babies xx
Hello, sorry for what you are going through. I've been told by specialists that if you do have an endometrioma then it's highly likely you will also have endo elsewhere too. I have an endometrioma and deep invasive endo and like you, my periods were never really a huge problem, it wasn't until it started affecting my bowel that I was getting a lot of issues. Some people can have it and experience barely any pain but that doesn't mean it doesn't need addressing.
It would definitely be worth finding an endo specialist if you can and pushing for an MRI in the first instance. That was how I was diagnosed but I know it doesn't always show up for everyone. All the best with everything xx
I don't have kids or plan to, however my experience of endometriosis is roughly similar - due to other physical problems (I was almost left unable to walk by the endometrioma pressing on my back nerves) it was eventually diagnosed (about 18 months). An endometrioma is endometriosis and yes it is likely to be more widespread. I never really had symptoms either; my endometrioma was squashing my bladder so most of my "symptoms" happened after my period and I didn't connect that discomfort or problems to my period as a result, which were always light and for a few days only (that changed after the operation to remove it!). On the other hand, I have friends who have children, who had those children after IVF failed and an MRI showed an endometrioma. Once it was removed, it was easier (not easy as endometriosis will probably still be present) to conceive, although I am aware it doesn't always end up that way.
Endometriosis is often a cause of infertility. You should get it investigated to rule out what it might be or not be. Good luck.
I'm so sorry you're going through this. So my 2 children are teenagers now and I fell pregnant immediately (early 20s) and no issues at all. By the time I was mid-30s, I got pregnant again in 2018 but I miscarried. I'd just started to have symptoms around that time (in hindsight) and I wonder if I'd already started to be effected and that's why I miscarried. No way to know for sure and obviously miscarriages happen a lot, but I think it might have been the difference. I then got diagnosed at the end of last year with severe deep infiltrating endo, bowel involvement, tethering of my bowel, ovaries and uterus, kissing ovaries etc so it had definitely been there for a long time.
Please get it investigated, even if you don't have that many symptoms right now. It took a long time for my severe symptoms to kick in. You need to find out if it could be the reason xx
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