Just been diagnosed with Endometriosis

[Mmk22]

Hi all,

I was diagnosed with Endometriosis yesterday and I’m just looking for some advice and help if possible.

I have always had very normal, regular periods all my life and then out of nowhere my last period was very suddenly very painful. I had severe sudden sharp pain a couple of days before my period, which lasted for about 30 mins; and then the same pain again on 2nd day of my period- I actually ended up fainting!

I went straight to the GP and was sent for a trans vaginal ultrasound. Uterus and right ovary were fine but she found a cyst on my left ovary (2.4x1.8) which is filled with blood- doctor believes it to be an Endometrioma.

The doctor didn’t seem too concerned, she thinks that it will be very manageable with contraceptive pill (currently not on anything) and it shouldn’t affect my fertility. I haven’t been put on the pill yet, as I’ve only had one painful period, she wants to see what my next period is like (I’m due right now) but so far I haven’t had any pain..we’ll wait and see.

Il be honest, I’m a complete mess about it. I suffer with severe anxiety as well and I’m just so worried about what my future will be like with this condition. Will it get worse? Does it spread? Also another thing I’m worried about is can it turn into ovarian cancer? I’ve read online that your risk is higher, especially if it’s on your ovary.

If anyone can shed some light on this condition or has had a similar experience, I’d be really grateful.

Thank you

Misha x

[Violet159]

Hi,

I'm sorry to hear you've been through this pain. It's easy to get overwhelmed by the idea of having this condition, particularly as it's been under-researched so I get the feeling I'm facing the unknown sometimes. There's a big Facebook group called Nancy's Nook which I've found super helpful for this - it's ran by admins who thoroughly check out the reliability etc of current research and publish it for us to look through, there's a huge amount of good-quality info on there which really helps.

In answer to your questions, it can get worse for some people, in others it can get better. Different treatments work for different people - I've found the mini-pill very good for my period pains, others find it didn't work for them at all. So it can be a bit of trial-and-error. Surgery can also make the symptoms go away, but sometimes it recurs or the surgeon did not get rid of it all. Have a good look at all the treatment options so you know what's available for you to try.

About it spreading, there's different theories about how endometriosis happens, some view it as something that spreads, but there are also theories that claim it's all present at birth but can be 'inactive' for a long time until it causes symptoms there. Again it's annoying that we still don't have a firm answer on this due to lack or research!! It's important to remember that endometriosis is not like a cancer, it doesn't grow or spread like that does. It certainly won't turn into cancer itself, as far as I understand current research shows some heightened risk of ovarian cancer but the risk isn't massively higher.

So basically, try to educate yourself the best you can on the condition - for me, understanding it is the best way to soothe my anxiety over it.

I hope this helps xxx

[Mmk22]

Hi Violet,

Thank you SO much for your response- I really appreciate your advice and help, it’s so lovely that there is this community where we can all talk and ask questions etc.

I will definitely check out Nancy’s Nook that sounds super helpful!

It is very overwhelming, I think for me it’s the idea that one day your fine and the next day your just not! But I understand that a lot of people suffer a lot worst than I do and I really sympathise.

I really appreciate you explaining to me further, you’re right- I think educating yourself about it really helps ease the anxiety. However, within that the Internet is a terrifying place when you start researching! I read all this stuff about how the cyst is going to destroy my ovary and I’m going to get cancer etc honestly it was awful! I think if you use reliable sources then it’s ok.

Thank you again- il keep you updated on my progress; for the moment we’re just observing, I’ve got another scan in 6 weeks.

I hope you’re doing well.

Thanks

Misha xxx

[Brambledoggy in reply to Mmk22]

I had one of those cysts, they called mine a chocolate cyst. It was filled with blood and was agony for months till I got it removed under surgery, I woke up one morning and I’d had so much pain in the night I had ripped my own hair out and found it in clumps at the side of the loo. Please, please, please read a book called The Doctor will See You Now by Tamer Seckin, MD, forward by Padma Lakshmi. It changed my views and knowledge entirely. Nina.

[StefaniaJW]

You are very lucky because you were diagnosed right away and clinically, wow!!! That's something to be happy and proud of!!

Now, having one 2,3-cm endometrioma is not that big of a deal.

Drugs like Visanne are actually very effective in shrinking endometriomas.

The worse thing that could happen would be going through excision surgery (there is only a handful of doctors who can perform it well in the UK).

So far your situation doesn't sound dramatic so don't panic and don't let anxiety take over you! Take this time to research natural remedies (diet, lifestyle changes, supplements) and what drugs you would be comfortable with taking. It sounds like you are in good hands so far!