Endometrioma

[Kerrigan1989]

Hi all,I have suffered all my life with heavy painful periods, I have been hospitalised in the past with excessive bleeding, always bleeding through my clothes, as I gor older I suffered a couple of miscarriages (I have been incredibly lucky and have 2 living children). I have had to fight so hard for answers, I have been put on countless different pills, the coil, the injection, the rod. Nothing worked and in some cases it made it worse.

I finally, after ending up in a and e with uncontrollable bleeding again, was told they thought it was endometriosis and wanted to move further. I then discovered I was pregnant. After having my baby I was then told the pregnancy probably helped if I had endometriosis. Again I suffered horrendously every month! I gave birth with no pain relief as the pain was nothing compared to what I feel every month.

I yet again went back to my GP,. They gave yet again metademicacif and recommended the pill, ordered an ultra soun, (which probably wouldn't show anything as endometriosis doesn't usually show on an ultra sound. Only this time it did. The songongragher told me I had an endometrioma, which you get and are visible via ultra sound when you have server endometriosis.

I now have an emergency gynea appointment in April.

I just want some advise as to what is an endometrioma? The a and e consultant could only tell me he couldn't believe I had managed to carry 2 children.

From what I have read online it has a risk of becoming cancerous, is what happends when endomhas been left for years.

I have suffered and fought so much and am heartbroken that I have been unheard all this time.

I have been told periods are something all women go through, had very little sympathy or empathy.

Has anyone had an endometrioma? Is the treatment always to remove? Does it impose risks to your ovaries as i would lobe another baby?

Thank you

[Hannah818]

Hi , sorry to hear you're in such pain, I got told about endometrias when I had vaginal ultrasound, after years of being told the pain was something else. I think it's like a cyst filled with blood and can be very painful when attached or in ovary or near fallopian tubes. If you can , push for a pelvic MRI because that might show the extent of endometriosis and give you and doctor a better idea of how much endometriosis you have and whereabouts. I think some people get endometria removed, others take medication to try to help reduce the size and some have them drained . I'm having mine removed as they've caused organs to attach, it's affecting bowel and bladder and don't think it's going to get better until it all comes out .

[Kerrigan1989 in reply to Hannah818]

So sorry to hear how bad your endometrioma is. Tha k you for the advise I will push for MRI. I have heard of some many women suffering and pushing for a diagnosis. I can't help but think if it was an illness that effected men alot more would have been done to find cures. So many male doctors and for as much as they say they understand the pain and embarrassment they never truly can.

[Sunset-lady]

Look up the amazing Rebecca Mallick on instagram lovely. She's a surgeon who helps women by educating them on these kinds of things. Her instagram account goes through all sorts of different aspects of endometriosis x

[Sunset-lady]

instagram.com/p/DEwYxxxsqR5...

[Sunset-lady]

There you go xx

[Kerrigan1989]

Thank you xx

[Scoutybob]

Sorry to hear you've been a bit thrown by all of this. You really need to see a full specialist and ideally get an MRI to see the extent of the endometriosis. As someone else said, endometriomas are cysts that are specifically from endometriosis and they are normally indicative of more severe disease so it needs a specialist. I have one ovary with a 7.5cm endometrioma and my other ovary had numerous smaller ones as well as one has now grown to 5cm. I have stage 4 endo and lots of adhesions sticking my organs together and involving my bowel. I'm due surgery in a couple of weeks where the cysts will be removed along with a lot of other work. I might lose one ovary from the larger cyst.

I believe they do hold a greater risk of eventually turning cancerous but I think this could be monitored if you don't seek treatment for them.

[Sunset-lady in reply to Scoutybob]

My consultant said that they only turn cancerous if they are really really big xx

[Scoutybob in reply to Sunset-lady]

Yes - I’m just still slightly cautious on it because they are growing quite rapidly so could become a problem. Also, they do really need to be removed because they are causing me a lot of issues.

[Sunset-lady in reply to Scoutybob]

My endometrioma has shrunk on zoladex. I'm having a hysterectomy tomorrow xxx

[Gundula1]

I didn't know I had Endo until I ended up with emergency surgery due to a ruptured Endometrioma (which is rare). Endometriomas are cysts consisting of endometrial tissue usually on your ovaries. Therefore it bleeds with your cycle and fills with blood over time. There is a 1% risk of larger endometriomas to become cancerous. Cysts larger than 4cm are often removed surgically. Medication (pill, merina coil) is supposed to stop endometriomas from becoming larger, but don't make them go away.With surgery there is always a risk of injury to the ovaries, but it affects fertility if untreated. If you want to preserve your ovary, they might just drain the cyst, but recurrence rate is fairly high (so might need procedure again).

I've lost one ovary due to the rupture (cyst was about 7 cm) and a little over a year later I am diagnosed with another one on the remaining one. But luckily I have two lovely children and haven't wished for more anyway, so I count my blessings being affected later in life than many others.

Pregnancies are by the way thought of slowing down desease process.

Good luck with everything!