It's been nearly a week since I have posted, but following my last post I was told my imminent operation to remove my bilateral cysts (5cm + 3.5cm) was to be put back from 48hours in the future to 28th December. I called back my hospital contact as questions arose, and asked whether she could categorically say that I did not have cancer, and she could not confirm. She also said I had some serous fluid on my abdomen, and then I was able to retrospectively diagnose my twisted and then ruptured ovarian cyst from September.
I have been told that I can start running again, but on further investigation and questioning I found that they are likely to twist or rupture, and if the pain changes to go straight to Accident and Emergency.
So, armed with this information, knowing my cysts are fluid filled, with a CA125 of 186, although I am some way to being in the clear, I don't feel my life is back on track yet. I feel like I want to take this in hand and drive it via A&E and start the peace of mind and healing process sooner rather than later between Christmas and New Year. I know they are experts, but I also know that until it's out, there is no guarantee what's in the cysts. We don't know what was in the cyst that ruptured or it's size. I just want them out and almost feel prepared to do something to aggravate the cysts into either rupturing or twisting. I am not worried about the contents being let loose in my body, because it's already happened. Does anyone have similar experience?
Although my doctor had originally wanted to wait until Dec to u/s my ovaries again he did warn me that I was notto jump on a trampoline, no rough romping with my children, no four-wheeler rides , etc. for fear of rupture. My right is 7.3 and my left is 5.7. I see a gyn/onc on Monday.
Prior to my surgery last year, my doctor advised me to "take it easy" and avoid lifting heavy objects or having strenuous exercise. I had a large cyst and while there were no concerns about ovarian torsion there were concerns that the cyst might rupture. I had my surgery less than two weeks before Christmas last year. For Christmas I got a 'clean bill of health' - in other words, no cancer so no worries - and that was a great gift.
When I went in with a 10cm cyst - I was in pain and they knew it and they schedule to remove it the next day (this was back in Feb/March). He (gyn) knew I wasn't feeling good at all and he even said he was afraid of this one rupturing. WHY would a doc wait to take it out like that? Tell them you can't do anything and honestly - I'd be afraid to do anything if someone said about me rupturing it. I really feel for you - please let me know how it comes out.
Then again, I just had the other LAP done 3 weeks ago - still bleeding, my right side last night was killing me and I thought I felt a lump on that side - my fiance is being such a great guy with all of this. I'm ready to throw in the towel.
I don't know if this can reassure you at all, but I was told that things that suddenly raise your blood pressure (such as lifting heavy weights, sprinting etc, esp. any activity where you may hold your breath against pressure) are much more likely to make your cysts rupture than endurance related sports like running.
In particular, while any cyst MIGHT rupture, it was also explained to me that partially or completely solid cysts are less likely candidates for bursting apart. I have a 4 cm partially fluid filled cyst, and my doctor told me that lifting heavy is fine.
I can understand that the doctor wanted to remove even the small risk of running, as long as he thought that your cysts were more likely to be malignant than benign. You are probably in a much better situation than I am to know if it was irresponsible of the doctor to tell you that you could start running again, but to me it sounds like they just wanted to help you live your life as normally as possible until you can get surgery.
Anyways, good luck to you! I hope everything goes well for you.
It's bizarre. I had a telephone conversation after the MRI review with my consultant. He thinks that as I am an athlete, my major concern is that I can run. This is not the case, but he said that I could resume running as the cancer risk had lessened. He didn't mention torsion, rupture or anything. It was only when I rung back and spoke with the Clinical Matron who was also in the review, and she explained that I still stood the risk of torsion and rupture, but because the risk of cancer was less because of the fluid within them that the surgical procedure in an emergency for torsion or rupture was different to that if it were known to be malignant.
I have two young children, and a life, and although I have taken on board that I can run, I am using it as a weapon almost to aggravate the cysts into doing something to enforce action. I regularly feel pain (most minutes of the day and more obvious during the nights) but the pain is not as bad as when I had the ruptured cyst retrospectively diagnosed. I think it comes across as a complete lack of care and clinical detachment. On the one hand, the Consultant has said he specifically wants to perform the laproscopy on me, but on the other hand is not worried what happens to me between now and then. So, as well as aggravating them, I have started on Chinese medicine and alternative remedies to try and resolve them naturally. To be honest, if I have to wait, I would rather be productive about it. I guess the attitude is kill or cure!
I just want peace of mind. There's still that small chance it is cancerous. It's an awful thing to have hanging over you. They have totally mismanaged my expectations. I have completely lost faith in the system and Western Medicine.
Thanks Mary76. That's very helpful. I see what you are saying. I didn't really consider about the type of exercise. I think my consultant thinks that runners just run, but I weightlift, swim, sprint, do circuits, you name it!
I am still in the diagnoses stage but they think there is a possibility of a ruptured ovarian cyst, tho I do seem to have all the symptoms in relation to ovarian cancer so I am definitly concerned.
I was wondering if when your cysts ruptured, did you have bright red bleeding? I got the bleeding the day after a sharp quick craming pain. Since then I have had three bouts of the same type of bleeding, plus bloating, and the feeling of wanting to urinate all the time. I feel a fullness and dull ache in my vagina.
the doctor put me on antibiotics, but test proved negtive to an infection.
After a CT and ultrasound, they definitly found a 'lesion'on the ovary and cysts on my liver.
Sorry it's taken me a few days to reply. Yes, I had bright red bleeding. Actually, here's a list of the symptoms as they happened - bear in mind that for 4 weeks the doctors were saying it was muscoskeletal and abdominal strain, which it wasn't:-
Stitch in right side
Pain through right of abdomen, feeling sick
Pain intensifying and spreading to lower abdomen, but also pain continuing in upper, right abdomen, right of belly button and 1 inch in from my upper part of hip bone
Pain when urinating right side - severe cramping to the point of having to either stop when trying to stand from sitting or after going to toilet. Felt like UTI - blood in urine.
Unable to breathe fully, yawn, sneeze. Could not lie on right side or left side as transabdominal pain. Pain throughout the abdomen sharp and intense. Later put down to serous fluid leaked from cyst(?) into abdomen?
Complete immobilization because of spasmodic pain through whole of abdomen, then spreading to left side of neck and eventually left breast and arm.
Digestive discomfort - abdominal swelling - got round this being really intense with a diet of porridge at breakfast, soup and bread at lunch and nothing at dinner.
The worst night sweat of my life
12 days of bleeding including intermittent days at the end of my period, passing a clot about 2 inches about a week into my period.
Continuing complete abdominal discomfort, but less intense. Probably because of 2 remaining cysts (simple?) right is 5cm, left is 3.5.
Raised CA125 of 186 recorded 4th October. Onset started 11th September without notice. Possibly twisted before it ruptured. I think I can remember the day it ruptured, as I was getting physio and actually felt like something burst in my tummy, but the pain didn't kick in for another 12 hours. But when it did it was as if I had two knives stuck in my belly - one through the side, and one 2 inches lower than the top of my right hip bone and 1 inch in.
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