Confused and overwhelmed

[vickyruss87]

Hello everyone, I had an internal scan last week after years of painful and heavy periods, and lower pelvic pain that started having no link to my menstural cycle. My doctor told me my results: an 8cm endometrioma on my right ovary ( which confused me as I always have pain on my left side) if I have this endometrioma, does that mean I have endometriosis as well? Feeling overwhelmed and upset at my GPs lack of knowledge.

[Rehanat]

Hey- it’s most likely you do have endometriosis as an endometrioma is a chocolate cyst which is generally stage 3/4 endometriosis. Has your gp said what they will do? Are they referring you to a gynaecologist?

[vickyruss87 in reply to Rehanat]

Thanks for the reply. Yes they have referred me but the waiting list is a minimum of 3 months so I am seeing a private consultant on Monday. How long would I have potentially had endometriosis for without knowing if it is at stage 3/4 now?

[Rehanat in reply to vickyruss87]

Oh I really couldn’t tell you- it’s something that can progress differently for different ppl. I didn’t have a clue I had it either until we had trouble conceiving.

[vickyruss87 in reply to Rehanat]

I'm lucky enough to have had 3 children, the problems started after my youngest was born around 2.5 years ago.

[Rehanat in reply to vickyruss87]

I had one then problems conceiving my 2nd when I was referred. You will most likely be offered a lap and perhaps hormonal treatment but it’s completely up to you what you want to do. I’ve just had my 2nd lap march and being greedy and want to try and conceive a 3rd if I can .

[vickyruss87 in reply to Rehanat]

Nothing greedy about that

[Rehanat in reply to vickyruss87]

I hope u get it all sorted- I would say go to a bsge registered gynaecologist x

[StefaniaJW]

1) A GP cannot help in case of endometriosis. If GYNs are not trained well enough to be able to tackle it and treat it effectively, GPs are even less knowledgeable. It is the international medical school program that doesn't include many lessons on endometriosis, so we cannot be mad at doctors. It's pointless and counterproductive.

2) An endometrioma is a cyst of endometriosis (it's called chocolate cyst because it is dark red/dark brown in colour because it is made of clotted blood). If you have an endometrioma, you have endometriosis. The extent of it will be confirmed during excision surgery.

3) Do I advise you to get a diagnostic/explorative lap to get a diagnosis and see the extent of endometriosis? Absolutely not. Why not? Because under-trained gyns who perform these kinds of laps only diagnose, remove some endo and close you up. Endo sufferers need more than that. They need to get ALL endometriosis EFFECTIVELY removed for the long-term in just one sitting. The only way to get surgery done right the first time is to only get surgery with a trained and highly-experienced endo EXCISION (NOT ablation!!!) surgeon. There are a few great ones in the UK who work within the NHS. PM me to get their names.

[megan31585 in reply to StefaniaJW]

I 100% agree here! I had two 7cm endometriomas, one on each ovary and had treatment/surgery by a specialist in fertility and endometriosis. He removed my stage 4 endo by EXCISION, not ablation and maintained my ovaries while removing the cysts as well. My pain/bloating has dropped by 90% after 3 months of recovery (on birth control full time too) I hear so many horror stories where women’s pain and issues remain from not getting treatment/surgery by someone fully educated about this disease. I myself had a GYNO first go right to suggest removing my left ovary and Fallopian tube unnecessarily so make sure to get 2nd opinions too. Stay as educated as possible

[AllthatGlitters in reply to StefaniaJW]

Hi could you send me the names of them if you don’t mind xx

[vickyruss87 in reply to StefaniaJW]

I'm not mad at the gp, just frustrated by the whole situation really x

[StefaniaJW in reply to vickyruss87]

Ok. Just make sure to follow my advice to the letter if you truly want to get it resolved well soon. Excision with a Nancy Nook surgeon. Pivotal.