Endometriosis UK

Told I had ovarian cancer but after major surgery it was severe endometriosis


After being admitted to hospital late November with suspected gallstones it was discovered that I had blood clot in lung and then told I had ovarian cysts. My ca125 count was over 6000 and after mri and ct and pet scan and oncologist appointments who all said it was ovarian cancer. Had a radical abdominal hysterectomy, oopherectomy and appendix removal in Dec. at my follow appointment 3weeks after surgery was told no sign of cancer and that it was severe endometriosis and may use me as a case study for the medical journal. Such a relief it wasn't cancer but still have a long way to go to recover from major op, Don't know much about endometriosis, as all my ovaries, tubes etc are gone I assume that the endometriosis is all gone?

Still on daily injections due the blood clot I had.

Appreciate any feedback.

I am 41 with no children

8 Replies

My advice would be follow the endo diet from the endo resolved website, ask to see the best specialists for a balanced choice of hormone replacement therapy, so as not to produce too much estrogen to reactivate the possibility of endo dormancy, yet still relieve the menopausal symptoms you may may be dealing with and also provide your bones with the nourishment and protection they need.

Congratulations on being Cancer free! I'm sure that's a load off your shoulders.

But at the same time sorry you were probably also shocked as the surgery was quite radical.

You are a unique case. Did you have any long term issues prior to the suspicion of gallstones?

Get your post surgical AND pathology reports. And have them explained in detail till you dissect every word and know for yourself what it means. Here(Canada) they are sent to our GP to explain to us. When they don't often understand well enough themselves. I would prefer if the specialist who performs the surgery prested them at the time of follow up appointment. And then have them refer you to oncologists who know this disease and what HRT's to recommend.


Thanks for your reply. Have always suffered with painful periods but just assumed I was unlucky. Had awful stomach pain for two days with then moved higher up on the side which was the blood clot... All been a big shock and big op. Finding walking uncomfortable but need to increase my distance as its four weeks now since op .


I am so planned in for radical hysterectomy and ovary removal in few weeks because of endo I'm glad yours was not cancer - how are you feeling emotionally without ovaries? I am worried about hormonal implications that this may cause. I believe that hrt is still a possibility x


Emotionally? I was a bit down and emotional as was constantly thinking about the cancer diagnosis and dreading chemo, but since it was confirmed it wasn't cancer have been a lot better. Have started getting hot flushes but no one has mentioned hrt to me yet? I have read on this site that you shouldn't have it to soon after surgery as it can make the endo come back?

Not sure if you have to take anything cause of the risk to your bones?

Good luck with your op.



My dr said hrt can be taken after 6 months post op and he does recommend it for bones and heart - I was going to try and manage with diet and calcium supplements and cod liver oil tablets but will have to see how I go after op. Where your hot flushes immediate after surgery? How do you feel in yourself? X


Will discuss with my gynaecologist at my appointment next week it wasnt mentioned at all at my last appointment!

This was my first ever op and all happened so quick so really didn't know what to expect, open surgery and was cut vertically from belly button down and had everything removed even appendix..

Was out of hospital much quicker than I expected and have been taking it very slowly.. Short walks and if go out its someone picking me up! Very spoilt!

Feeling ok in myself now just scar still tender and I also still injecting tummy everyday cause of blood clot.

Hot flushes mainly at night and started a few weeks after surgery...



I am quite lucky as my bowel and bladder have endo on but they r not adhesioned to anything so fingers crossed just womb Fallopian tubes cervix ovaries out for me then a "tidy up" to get endo off remaining organs . Glad to hear you are out and about x


12 weeks now since my op and trying to do more but I get so exhausted is this normal? Due to go back to work soon and am hoping to do reduced hours to start with..

Not sleeping well either ...


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