I don't know where I'm standing with endometriosis right now. Confused.

[Fatimaalh]

I'm 25 years old. Single. My doctor said I have Endometriosis of rectovaginal septum and vagina, It's 6*4*4 cm. Adhesion occurred with the large intestines. Also he mentioned something about Endometriosis of pelvic peritoneum that I have. I have a problem holding my urine and sometimes blood with my urine. I'm on hormonal therapy now for almost 2 months. I have experinced some of the side effects like headache and hot flashes, but still in pain and my back still hurts a lot. My doctor said he can't operate me because my surgery is complex and can be done only by specialized surgeons. Do I have to worry or you guys think hormonal therapy will make it all go away?

[Laura_T]

I’m not 100% on this but I’m pretty sure it doesn’t make it go away. Think it will just stop it progressing and ease some symptoms. Sounds like you are having a rough time and need this sorted. Hopefully they can refer you onto a specialist ready for when the injections stop.

I’m on the injections but only for 6 months. Most symptoms have gone but my body aches and still have bad back x

[Fatimaalh in reply to Laura_T]

I hope you feel better and stronger Laura 😔

[Starry]

Hi, I am recovering from surgery on a 3.2cm RV Endo nodule with adhesions in July.

If you have a nodule in the RV space your general gynae isnt permitted to operate on it but should be referring you to a accredited BSGE Endo specialist centre according to the NHS contract treatment pathway specified in the document below. Do check that this is what is being done. Your GP can refer you if the gynae won't.

google.co.uk/url?sa=t&sourc...

RV Endo as a type can tend to be hormone resistant, as established nodules can develop the ability to synthesise their own oestrogen. I tried both mirena and zoladex before my surgery as I was concerned about the risk of a resection but they didn't work for me. I think large nodules cause pain through pressure from their sheer mass. That said we are all unique and you may find yours responds better.

endopaedia.info/subtype14.html

It's a big decision to operate when the bowel is involved as their are significant risks to weigh up. However not having excision also may carry risks if the nodule's still active and risks penetrating through the bowel wall. Its very much a personal risk based decision.

Thinking of you.

Feel free to pm me if you want X

[Fatimaalh in reply to Starry]

Thank you Starry. I hope you feel better and I hope hormone therapy will work for me X

[sanchia46]

It doesn’t make it go away it’s for pain management. He’s right to say that the op should be done by a specialist. Is he going to refer you then?

[Fatimaalh in reply to sanchia46]

Hmm Yeah I guess. Thank you for your replay Xx

[shezza15]

Unfortunately i dont think it ever fully goes away without surgery and in ,y case it returned later on so i believe once you have endo you have got it and thats that, but there are opps you can have to ease the symptoms and medicines to reduce pain, maybe if your unsure about anything you shud mabe get a second opinion or go back and talk things through once more, i also no it is a long drawn out process and you feel worse before you feel better especial if your confused and anxious, i hope you become st ease soon hun, we are all in this together and we are all suffering,

[Fatimaalh in reply to shezza15]

Yes you're right! .. we're all in this together. I hope it goes well as I'm very worried and feeling low.