Hemeragic ovary cyst

[Skyllark]

My wife has hemorrhagic ovarian cyst... due to her being high risk for surgery they will not do anything but pain control (She has CAPS) and antibiotics to prevent infection. Anyone dealt with this, and have any suggestion on any treatments that the doctors could try? I am in Ontario, Canada.

[Jmiller623]

Hi Skyllark. This is a tough spot indeed. You need to ask the team for a very good hematology consultant that can help with intraoperative risk. This is not an easy case and I don’t have your wife’s history. To remove it is risky but to leave it doesn’t help her quality of life. It’s something you must discuss with your doctors there. A candid conversation is necessary. Don’t hold back.

[MaryF Administrator]

I am just alerting you to the two doctors in Canada off our charity list: ghic.world/about-ghic/index... I guess the current team will monitor this to seee if it goes away? MaryF

[Skyllark in reply to MaryF]

You need some younger doctors on your list for Canada. Both are over 60, and only researchers.

[KerryA]

Hi. Sorry to be delayed writing. I had something similar about 18 years ago. I had cystic ovaries too. While I was waiting for further investigations, they suddenly bled catastrophically as, unbeknown to me at the time, my INR was really high. It was often out of control even though it was being monitored, in my view not enough, by the INR clinic. As a result, I had an abdomen full of blood (it looked like i was 7 months pregnant) about which they couldn't do anything except let it gradually be resabsorbed. Anyway, after a month in hospital and great difficulty getting my INR and pain under control, I went home. It took me really about 2 years to get over it fully. I was continued on 2x daily injections of low density heparin. Eventually I went back on Warfarin but was still only checked every 2-3 weeks and it still felt it was unstable, and yes, had another ovarian bleed but thankfully smaller

As I wasn't happy with the clinic monitoring it, I persuaded my haematologist to refer me to one of the top UK specialists in St Thomas' Hospital, London, Dr Beverley Hunt, (working with Dr Graham Hughes) who let me monitor my INR so I bought my own machine. It has been much more stable since. She also said it would be too dangerous to remove my ovaries so referred me to a specialist gynaecologist also in London. She suggested I have a Depo-Provera injection every 3 months to minimise the activity of my ovaries. They have thankfully never bled since then.

A couple of years ago I developed autoimmune hepatitis so had to stop the Depo-Provera but thankfully my ovaries didn't get too active again as I was close to starting the menopause. This is creating new challenges but not too bad.

I don't know if any of this is helpful to you. The 2 keys for me seemed to be controlling my INR and ovarian activity. I hope they soon find something which will keep your ovaries calm and painfree. Best wishes, Kerry

[Skyllark in reply to KerryA]

So last Thursday night KGH (Kingston General Hospital/teaching hospital for Queens medical Uni.) hospital did emergency surgery. Removed my wife’s left ovary, and the cyst, and 650ml of blood and clots. Stitched her right ovary with a dissolvable stitches. Staples over the incision are coming out tomorrow. She will do her usual plasma phorisis and will hopefully be home tomorrow with me and our cats. Recovery has went well so far. Only concern is the hot and cold flashes... and nausea this morning. They are concerned with the trauma the right ovary is not working and menopause is going to kick in. She is only 39. Follow up in two weeks with bloodwork will show what’s going on. To know for sure.

[KerryA in reply to Skyllark]

I'm sorry to hear your wife had to have surgery after all but I hope that she'll recover well and won't be plagued by further ovary problem's. Best wishes from Kerry