Endometriomas returning

[Kirsty360]

Hi ladies,Im wondering those of you who have had endometriomas return, how long was it post lap before they come back?

I had surgery in March 23, where I had extensive adhesiolysis and drainage of 2 9cm bilatreal cysts.

I noticed a few months after I had similar recurrent pain as pre op, and brushed it off as recovery.

At my 3 month post op follow up (Nov!!) I mentioned this pain which was now becoming more severe, I was palmed off as it being muscular as I'm a right legged amputee, the absurdity 🤦🏻‍♀️

Not being happy with this answer, I asked my GP to send me for an ultrasound at the beginning of Jan... I had this on Monday, low and behold I received the results on Tuesday which do in fact show I have bilateral endometriomas again, measuring just over 3cm each!

Im not particularly bothered about treatment yet as I am not hugely debilitated by them, I just wanted to know for my own sanity that this wasn't muscular. I'm so grateful that the GP listened, and surprisingly the NHS offering me the USS within weeks and have the results already, this is a miracle given the current climate and waiting times.

I just want to add, please don't give up advocating for yourselves, we know our own bodies and if something isn't right, seek answers. I read lots of posts where many of you are not heard and it hurts my heart how we are treated differently based on postcodes!

Apologies for the long random post...

[LME5]

Hi Kirsty, thank you for sharing your story. From what I've heard, the return of symptoms, including cysts/endometriomas, is dependent on how aggressive your endometriosis is. The formation of endometriomas is influenced by high levels of estrogen, which also fuels endometriosis formation/growth.

My experience - I had a laparoscopy January 2016 to remove an endometrioma and effectively (officially) diagnose me with endometriosis. I was on the combined contraceptive pill at the time, and continued to be on it until December 2022 - changing the pill multiple times until I found one that suited me! During that period, I never experienced any additional cysts. However, an MRI I had in January this year revealed that that I have one endometrioma and two additional cysts - 13 months since coming off the pill.

My sister, who also has endometriosis, had cysts forming within two months after laparoscopy surgery. She had stage 4 endometriosis and a very high CA-125 level. The laparoscopy was to treat a 20 cm cyst! She subsequently had hormonal treatment in the form of Decapeptyl injections. Her cysts subsequently disappeared.

So it's pretty individual!

Do keep an eye on your cysts with regular scans, if you're not wanting to have surgery just yet

[Kirsty360 in reply to LME5]

Thank you for your knowledge LME5, that makes a lot of sense it returning so quickly then.Thats a heck of a cyst your sister developed, but interesting how the both of you were cyst free whilst taking medication. The consultants struggle with forms of contraception as I have a brain tumour and take epilepsy medication, so it has to be progesterone only pill. It was recently increased to double the dose and the side effects knocked me for 6, I wouldn't say I was suicidal but I had some really dark thoughts, so would rather put up with the symptoms than have it impact my mental wellbeing.

My GP has expedited a follow up appt with the consultant, I assume he will keep regular checks with scans now he knows its not 'muscular'.

I appreciate your reply ✨

[LME5 in reply to Kirsty360]

Gosh I'm sorry to read about your brain tumour. I hope you're managing ok all things considered. Synthetic progesterone used in hormonal treatment is known to have adverse side effects when it comes to mental health, namely anxiety and depression. It's so difficult juggling between physical and emotional symptoms!

I'm glad your GP has acted quickly and that he's keeping an eye on you. Trust your gut and decide what's best for you with regards to surgery. All the best

[Kirsty360 in reply to LME5]

Managing is probably the right word. It is what it is, I'm grateful I get to wake up each morning as it could be a whole different story. Thankfully I had 98% removed followed by chemo and have been on watch and wait since. Then endo reared it's ugly head again, it's been one thing after another the last few years I need to catch a break.

I work in the mental health sector so I have a good awareness on signs/symptoms so I was able to catch it early and put strategies in place to protect my mental health, its a massive juggle as they both go hand on hand!

The support off my GP was a huge relief. I didn't have to battle to be heard, especially in the current climate of the NHS, emotionally that could have tipped me too.

I've been through worse, I can get through this again ❤️✨

[LME5 in reply to Kirsty360]

Bless you Kirsty. I hope things get better for you from now on 🙏 I'm glad you have support and tools at hand to help with you mentally and emotionally. Good mental health is what keeps us going and what gets us through such tough episodes. Wishing you wellness 💛