Endo on both ovaries - what are likely to be my options?

[Amb43]

I was recently diagnosed with Endo on both ovaries, that's all I know as I was briefly told (by the anaesthetist!!) while still groggy. I have my post op appt. in a few weeks and would like to get a bit of a heads up with my possible options, so I am armed with as much information as possible. I am 43.

There is a much longer story to this but I am heavily medicated at the moment.

Thanks ladies. xx

[missee]

it was the aneathesist who told me that i had lost my ovary and fallopian..i lost it due to a dermoid cyst with thyroids in..wen i saw the pick(at the follow up) it looked like a brown giant .mushroom wrapped all over it....its so wrong...the least we deserve is a better explanation. i dint even ge one at the follow up the doc who i had was horrible. ould never go to him again....this is wat makes us different to men...i dont think some male gynae docs are quite tuned into how just taking a part of us can emotionally affect us so much....i wish you so much luck......xxxxxxxxx

[Sunflower846]

I had endo on both my ovaries but a huge cyst was removed off my right one. Had an mri scan in jan after my lap and it showed lots of deposits of endo on my right ovary and cant be removed by op as they are deep rooted. I am now on a diff hormone treatment to try and shrink the endo or i will lose my right ovary, They can removed endo from ur ovaries but not sure how. Both my ovaries were pulled in and stuck to my bowel and were seperated but i think there has bn alot of damage and scar tissue left as im having alot of bother still. Gd luck and hope u can get it sorted xx

[Amb43 in reply to Sunflower846]

Thank you Lynnie. You have really been through it too x Was all your treatment done by Laparoscopy? What is the hormone called that may shrink the Endo?

Hope your are not in too much pain today, and that you can get something done about the pain you are still in. Take good care. xx

[Sunflower846 in reply to Amb43]

Thank you. I had alot of endo removed during my lap but there is still some left which is why im still having alot of trouble. I have tried decapeptyl but side effects were bad that i stopped it, put on provera but the constant pain meant it wasnt strong enough and now been put on danazol and having horrible side effects again so fed up with putting my body through all this im not in the right state of mind now. my right ovary has alot of small deposits of endo which is deep rooted and cant be removed so they want to shrink it but i dont believe that they can really do that, and it will just keep growing back anyways. Hope ur doing ok today and feeling better too and having a speedy recovery xxxx

[Amb43 in reply to Sunflower846]

So sorry you are going through all that, this damn disease can affect us in so many ways, but, we won't let it win, will we!? Hang in there, One thing though, please, please, come off the Danazol, the drug is outdated (20 yrs Old) and it's side effects in question, Please see your doctor soon my dear.

Take good care of you and hope you can try and enjoy Easter. xxx

[Sunflower846 in reply to Amb43]

Thanks. How r u doing? Yeah i want to come off danazol as im fed up of feeling rubbish. I can feel myself being more moody and snappy. I am still in constant pain since my lap and dont think i should be so im bak at gynae on the 11th and telling him then. Not sure whether to take it until then or come off it. xxx

[Amb43 in reply to Sunflower846]

Bless you, like you I have had enough of this incessant pain, it shouldn't have to be this way. Hope you can hang in there until the 11th and that they can help you. Not sure but don't know if it is a good idea to just stop the Danazol, again, hang in there if you can. xx

I'm not doing too good at the moment, pain, that seems to be getting worse, and the dreadful side effects from Gabapentin which is going to be changed after Easter. Needing more and more morphine, still unable to be on my feet to do little jobs around the house for more than 20 mins. But, at least I now know there is nothing physically wrong with my back and told it is Endo related, (but yet to convince Gynae). Being laid up so long hasn't been good for me so been given some small movement physio to help. Then, roll on the 18th for my post op appointment where I will find out more about my Endo on both ovaries, and what my options may be.

Hope your pain eases enough for you to enjoy Easter, take good care. xxx

[Amb43]

Bless you missee, it IS wrong xxhugsxx

How dreadfully awful to wake up to that kind of news, and from an anaesthetist. I appreciate they are professionals and are part of the op, to a degree, but, surely we deserve, albeit a brief description, from someone more directly involved, at a time we can comprehend, which will hopefully put our minds at rest a little until our post op appointments, (mine will have been 8 weeks by the time I go). I am by no means knocking the anaesthetists, they do an amazing job, and is a very important part of any op. They keep us safe.

If you are not happy with your doc, it is your right to find another, one that hopefully be far more empathetic and helpful. Are there any ladies at your surgery? Not that they are solely able to deal with this better, my initial appointment at Gynae was with a lady, and, as you can read from my posts, was dismissive, and not very well informed, and I left completely devastated. It truly is a minefield out there trying to find the right professionals to help us. Also look into getting specialist care from someone who works specifically with Endo.

Hope you are doing ok at the mo. Thank you again.l xxx