What stage is my endo?

[Emmarussell]

I went to hospital yesterday and the nurse told me I have 2 endometrioma cyst on my left ovary that are 4cm each and 3 cysts on my right ovary that are 3cm each she has said I may have adhesions and shes said I'm going to have another laparoscopy to try and cut or drain them away which I'm relieved because my symptoms are horrific. She didnt mention what stage I was at with endo, does anyone have an idea? Thanks in advance xx

[Pink_Moon]

I am not an expert and I’m waiting to be diagnosed myself, I’m having my first diagnostic laparoscopy 11th Jan. But I have asked the same question as I have a small Endometrioma on my right ovary and I was told if you have Endometriomas it’s normally stage 3 to stage 4.

Can I ask you as I’m suffering with pain did your Endometriomas grow quickly? I haven’t been told the size of mine but last couple of weeks the pain has been bad especially during ovulation and feeling nauseous all the time, did you suffer with sickness? X

[Emmarussell in reply to Pink_Moon]

Thankyou for your reply, I have terrible flare ups where I'm crippled in pain and very bad nausea and sickness! So it's probably due to them reacting to the hormones at certain times of your cycle! It's just hell and these flare ups can happen anywhere at anytime! Hope you get yours sorted hun what a shit disease it is! Xxx

[Pink_Moon in reply to Emmarussell]

It’s the worst, it started about a week ago now and when I checked I was ovulating the pain was at its worst, now it’s dull aching off on and on through the day same with feeling sick just so fed up and no energy. I’m sorry your feeling the same way, yep worst disease ever xx

[BrightLights88 in reply to Pink_Moon]

I had 9 hospital admissions due to having flare ups every 2 months, the pain was horrendous it felt like my uterus was going drop for all my admissions I was kept in for 1week and half on pain relief. After 11months I finally had my first lap. They drained the cyst and cut away adhesions and some found in my bowel too.

Good luck ladies. I am pain free since my surgery.

[BrightLights88]

hi I ha the same but only had two 40mm cyst in left ovary and one stuck behind my uterus i was told i am stage 4. i had my first lap in August 2019.

[StefaniaJW]

1) Cysts need to be fully drained and then excised + all other endometriosis has to be excised as well thoroughly to prevent them from returning (you can check out the post on endometiomas on dr. Andrea Vidali's instagram)

2) Multiple endometriomas are usually present in stage 4 endometriosis or at least stage 3. I suggest you look for an experienced excision surgeon + a team of specialists to perform through excision straight away

[Pink_Moon]

Hi, not sure if you meant me about why I’m going for a diagnostic laparoscopy, I stated above I haven’t been diagnosed yet but I have been told I have an Endometrioma through a MRI scan. I have asked this question before maybe I didn’t make myself clear in the previous message but it wasn’t by my doctor but by other people on here that if an Endometrioma is found it usually means stage 3 to 4.

[StefaniaJW in reply to Pink_Moon]

Yes, my question was basically why are you having a diagnostic laparoscopy and not full excision straight away on January 11th, considering the MRI results already prove you have endometriosis?

[Pink_Moon in reply to StefaniaJW]

The MRI only showed a small Endometrioma and another cyst which he thought was likely to be a simple cyst on my other ovary. He said MRI didn’t show any endometriosis so that is why I’m having a diagnostic laparoscopy but the Endometrioma will be removed and also the other cyst if it hasn’t already disappeared naturally. He did say if endometriosis is found it will be removed during procedure.

[StefaniaJW in reply to Pink_Moon]

perfect! Now it's a lot clearer

[_EndoWarrior_]

I had Stage 4 :Deep Infiltrating Endometriosis, Adenomyosis and Uterine Fibroids and Endometriomas on both ovaries. I suffered with the usual symptoms you have mentioned and lower back pain and lastly started getting burning and aching sensation down inner left thigh which was excruciating (not even 15mg of codeine helped)and left me bed bound as I could not move with the pain.

Are you seeing. BSGE Endometriosis Specialist at one of the BSGE Centres?

What did they do during laparoscopy? Ablation or excision?

I would ask your gynaecologist’s secretary to email/send you your full surgery report.

Once you have that you can do your own research.

clearpassage.com/endometrio...

Hope this helps 🙂

[wanwood]

The ASRM (American Society of Reproductive Medicine) staging for endometriosis isn't that meaningful, and your surgeon would technically need to be the one to diagnosis it in any case. Basically, the meaningful difference is whether you are stage 1-2 or stage 3- 4. If you have endometriomas, that would be stage 3 or 4.

[greynash]

Hi, I can’t answer your question I’m afraid but I do understand your confusion as I had surgery last July which removed endometriosis, adhesions, fibroids and a cyst, but that’s all I was told. I have no idea how they removed it / what stage it was / any level of after care. (The surgery came about due to fertility issues not because anyone ever believed I had endo!) Would also love to hear the advice on how you can find out more information...