UPDATE: Today was my follow up with my OB and she said the CT showed nothing. I mentioned to her the bloating and the fact I have gained 8 lbs since we started this all a month ago. And she thinks its gastrointestinal. I asked her if she was sure it wasn't cancer or anything and she said yes the CT would have showed something. Also really women over 70 get ovarian cancer. According to the CT my bowels, kidneys, lungs, liver all looked good. Her only recommendation was maybe an exploratory or maybe see a chiropractor. My CT said it picked up my ovaries. According to her a CT would pick up the smallest little thing.
For the past 8 months soon going on 9 I have had really really bad pain during intercourse. I also have pretty intense pain on my left ovary that is sharp. My bowel movements have changed going on 4 months and I have to bare down to pee as id if I was having a BM. For a while my left aide hurt, but they think that was a kidney infection although the urinalysis doesnt support that. I have had two ultrasounds and two trans vaginal ultrasounds neither can locate my left ovary. On the last trans ultra sound the tech said she could see the tip but nothing more. I just had a CT and the preliminary response was they didn't find anything. I have a follow up on Tuesday, but I am not sure what to do at this point. I know something is wrong. I have hot flashes, I have pain in one spot that is intense and through the day my vagina feels like I am being kicked there, my BM have changed to almost non existent, my periods have changed, and I am 34 no kids. What do I do now? What do I ask for?
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Birdeatcat
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Hi I would ask for a second opinion, a CA125 blood test, a smear and an MRI. Make a fuss I f necessary. This is your body and hopefully it won't be anything sinister but you owe it to yourself to get an answer. You shouldn't have to put up with this. Sit and explain until you get someone to listen. I wish you well. Do let us know how you get on. Big hug. Kathy xx
I agree with Kathy. I had a similar pain and they couldn’t see anything on ultrasound or CT scan and then a few years later I had stage 3 OC. A PET scan would show cancer. Don’t let it go.
Hi there. I agree with what's been said. If your left ovary can't be seen, you need to know why. I've always found PET scans to be very good. Best wishes. Pauline.
Omg this is like hearing myself talk. I'm so sorry for your struggle and pain, but I am literally crying I'm so happy to have found you. I'm hoping maybe we can help each other figure this out.
I'm 31 and I have the EXACT same symptoms as you. You are actually the first person I have heard describe the way I have been having to pee for 5+ months. (Felt like I've had a UTI for like 11 months, but never actually do) I've been describing it as having to "push it out", but baring down totally resonated with me too. I usually start sitting down, and it never feels like it all comes out, so then I actually have to stand over the toilet and even after pushing sitting down, then standing up and pushing, I STILL feel like I have to go. It is maddening. I have found its worse the more constipated I am, although I virtually always feel like I have to go. Sometimes I just sit on the toilet for what feels like an hour just letting little bits trickle out at a time.
As for BM, I have tried everything and what I have found is raspberries are literally a miracle. I eat like at least a container a day and it works better than even Senna. I also get really bad GERD and it is directly related to how bad the constipation is.
I also have pain in my lower left side/ovary area. Sometimes it shoots into my leg. I had a Pap smear and culture etc today, and I could barely walk afterwards. The pain was shooting all the way to my ankle and I was really dizzy/felt like I was going to faint. My guess is something is pressing on my front sciatic nerve?
Some other interesting symptoms are my bra size has gone up at least a full size, maybe two. My face is much more pale and just generally not healthy looking. I have a weird rash type thing on my inner thighs almost like melasma I think?I'm super bloated/distended, but rather than loosing weight, I've actually gained weight. I think its mostly water weight, and its definitely not from eating, bc I have completely overhauled and cleaned up my diet since all these symptoms appeared in hopes that would help me feel better, so in theory, I should have lost weight...
I also have hot flashes and last night woke up with my sheets completely soaking
I've had an ultrasound, which the (very general and seemingly untrained in these things) primary care physician said looked normal other than my left ovary appeared to be ovulating -- which I wasn't so convinced was accurate.
I had a CT scan in the ER which was supposedly normal. (Again, general Internal medicine doctor who I don't have a lot of confidence is really able to discern, and whom also actually said, "We can do a CT but we're not gonna find anything" -- So seems to me, she was looking to not find anything and her need to be right about that was greater than the need to actually find the cause of what has completely taken over my life.) I have another ultrasound coming up on the 11th with a new GYN who I have very high hopes for. When she did a pelvic exam/felt around today she said everything feels good and she couldn't feel any masses or anything unusual.
The reason I am on an OC forum, is I have been searching and searching for other people with my symptoms and when I first read the symptoms and stories of OC -- I was like, "That's me!!" I also have a grandmother that is in remission from OC for the second time, as well as another grandmother that died of breast cancer, and lots and lots of other different types of cancer on both sides of my family.
I'm keeping an open mind about the possibilities of a cyst, fibroid, benign tumor etc, but the only thing I am almost certain of, is SOMETHING is blocking my bodily systems down there. I can't think of another possible explanation.
The reason I very strongly believe this could be OC, is I am the most exhausted I've ever been in my life, and no amount of sleep helps.
Please keep me/us updated on your journey and I'll do the same. Maybe one of us will discover something that can help point us in the right direction! I've had nothing but struggle up until this point getting people to listen to me and have even been told its phycological or I'm depressed from Covid. I agree with everyone else we have to keep pushing and stay persistent. It doesn't matter if we feel annoying or like we're crazy or overreacting. No one should have to live like this.
I'm completely open to any advice/suggestions thoughts too
To you and everyone else on the forum, my deepest sympathy for what you're going thru. God bless <3
First off. Have you been seen by a Gynecological Oncologist?
They are the specialist who know more about confirming and treating OvCa than and everyday OB-Gyn or Oncologist.
They know about the thirty different types of it, not just the more common ones.
My wife’s Epithelial Ovarian Cancer didn’t show up on X-rays or CT scans, as hers never developed a tumor. It just created liter after liter of Ascites in the abdomen and Pleural Effusions in the sacs around her lungs.
Only a PET scan showed the hot spots where the cancer had spread, but her diagnosis came to late.
Not yet. Tuesday is my next appointment with my gyno and that's I am here trying to determine my next steps. I am supposed to get the official CT results. Within the last few days I have developed awful bloating and it is so uncomfortable. I also get full pretty quick a couple bites in and I am done. Food doesn't sound good at all. In my head that tells me I need to move a bit faster on this.
Usually mornings are better than the afternoon and evenings. But all in all nothing from the first time I went in has changed other than I am 100% sure that it's not an impacted issue.
On my first visit when she could feel the mass she couldn't tell if it was a mass or my bowels because "I was impacted". So she had me do mirlax and a stool softener for two weeks and then we did another ultrasound which still showed nothing, but because my gyno was out there was no exam. My periods have changed now they are extremely light for four days and a medium day and then I am done.
On my first visit I asked if we should run any blood work or anything and she had said not yet.
So, to be very clear I haven't been diagnosed with anything. I've tried to find other things it could be, but nothing else really makes since. I feel like at this point I just want to know. Whatever it is, lets find out and let me start treating it.
On Tuesday I am going to ask for another exam. If she tells me that the the CT is clean I am going to ask for blood work and a Pet scan. If she is unwilling to do that then I will seek out an OB/gyno oncologist. Is there anything else I should be doing? Or asking?
hi Dennis, thanks so much for your response and I am so sorry to hear about your wife. I personally have not been to a gynecologic oncologist, as I would have to either pay out of pocket or get a referral, and they won't refer me if they don't find anything/feel there is a reason to. I am just pushing as hard as I can for a PET scan as I go through these less accurate tests
hi differentforgirls, thanks so much. I did ask for CA-125 today and was told its not helpful for detecting OC in early stages. it's so discouraging, because it's like a video game - in order to get to the next test, they have to find something on the one before, especially when you're considered on the young side for something like this. How are you doing? I hope well!
I’m feeling your frustration bless you. I understand that a CA125 isn’t always an accurate measure of whether you have OC or not, but if you have a higher than normal reading then they should investigate further. Hope you get something sorted soon for your peace of mind.
I’m doing ok thanks, in remission for 2nd time. Have new meds to hopefully keep it at bay 🤞🏼
Thanks so much - I couldn't agree more. Could I give my Doctor your number so you can explain that to them!?
Wow congrats. Wishing you peace and good health too.
God bless <3
Hello Birdeatcat,
First off. Have you been seen by a Gynecological Oncologist?
They are the specialist who know more about confirming and treating OvCa than an everyday OB-Gyn or Oncologist.
They know about the thirty different types of it, not just the more common ones.
My wife’s Epithelial Ovarian Cancer didn’t show up on X-rays or CT scans, as hers never developed a tumor. It just created liter after liter of Ascites in the abdomen and Pleural Effusions in the sacs around her lungs.
Only a PET scan showed the hot spots where the cancer had spread, but her diagnosis came to late.
Dennis
Ladies, you have to get referred to proper specialists and get PET scans.
I had to pay for an ultrasound at the start because I was on a long waiting list and knew that something was badly wrong.
Hi woolyhat, I finally got an urgent referral to a gynecologist, but they made me do another ultrasound since its a new doctor/medical group. That was today and they didn't find anything. I asked for a CT or ideally PET scan (per all of your suggestions) and the medical assistant said we can follow up with my doctor when she is back next week. It's very discouraging how long I've had to wait to accomplish anything. What other specialists would you recommend? I would love to be able to go directly to a gynecologic oncologist, but there's no way I could get that referral without them first finding something Completely open to suggestions. Thanks so much
I’m in Ireland so I can just go to a private hospital and pay for a test. I’m not a person who has much money but that’s how I got a CT when I knew I needed one. You’re probably in the UK
Ah, I see. I'm actually in the US, so I could go pay for a test too, but the test would cost somewhere around $3,500, so thats not realistic for me now. I'm considering just paying for private insurance, which is incredibly expensive here as well. But right now I have something equivalent of an HMO, which is where you always have to have referral to go to any kind of specialist.
And when you paid for the tests yourself you found your OC? Thats incredible you followed your intuition like that!
Please press for another opinion if you feel you’re being fobbed off. Also whilst it is generally a disease in the older age group it’s not exclusive. I was 48 when diagnosed last year with OC and womb cancer but thankfully caught early...not that that makes the fear any less.
hi yorkiepudd, thanks so much. Yeah, I had a roommate who was diagnosed at age 34, but it was already in stage 5 and she passed 4 months after we found out, so I am def being hyper-vigilant about it. Not to mention my grandmother is in remission from OC for the 2nd time... it's really tough, bc they keep saying they don't see anything, but I have ALL the symptoms and I don't know what else these symptoms could be. I also find that the more I try to push for tests, the more "emotional" they perceive me and the less seriously they take me. It's really tragic that you have to play this game with medical providers to be listened to. When I do get to the bottom of this, I feel very called to do what I can to help other women in this situation and hopefully work towards reforming this very broken system...
Sorry to hear that. I had a "normal" ultrasound today too. You would think it would be a good thing, but I just want them to find something so I don't just have to live like this with no solution. I know its so frustrating, keep pushing <3
It is indeed wrong that you have to fight some so hard. I was incredibly lucky but hear so many stories from people fobbed off for years in some cases. That your grandmother has it should be a warning light for them.
I was able to see my PCP and he was very unhelpful in almost all ways. However, he did run a blood panel. My CA 125 came back at 12. All my other blood tests came back normal and with the expection of my thyroid that was low. However, no meds where prescribed.
My OB on my request did send a referral to a GI of my choice so that is my next step.
Keep advocating for yourself. My gastro Dr is the one to find my mass with ultrasound, ct was clear which I questioned and followed up with surgeon who read the ct scan himself and I am now scheduled for surgery next week.
If you feel something is wrong you need to continue to go back. A good gastroenterology doctor is priceless as far as I am concerned! Good luck to you in your journey and hope you find the answers soon.
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