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Ovarian Cancer Community
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13459739 tn?1430327101

abdomen pain

Hello,

I have a question about ovarian cysts, cancer, and symptoms. I apologize for making this so long!

I am a very healthy, 35 year old, mother of two boys. I am extremely active with yoga and hiking. My career is built around a healthy lifestyle as disease prevention (specifically cancer) and nutritional healing (mostly cancer/ also food allergies and lifestyle diseases). From bout the first week in December 2014-mid March 2015, I went through a very abnormally stressful time.

I recently had a copper IUD taken out in Oct 2014 because of constant pain in my abdomen. When my gyn removed the IUD she did an ultrasound and everything seemed to be just fine. I felt great afterwards... no more pain. I tried to start taking the chewable birth control pills in January but they made me have terrible moods swings and brain fog. I am normally very calm... but not on birth control pills!

I was fine until late Jan 2015, when I started to have an aching pain all the way across my abdomen. Probably by mid February, the pain had spread across my lower back. It was very similar to the pain from the IUD where my abdomen was constantly inflamed from reacting to the IUD. I started feeling tired all the time in about Feb but thought it was just stress. Starting in the beginning of March, I felt a twinge in what seemed to be my hip flexor muscle. I constantly tried to 'stretch it out' but could never hit a stretch where I could feel it pulling the pain out.

The pain in my abdomen and lower back has continued constantly and can sometimes be sharp. The fatigue is relentless. I used to be up and going by 5am and am now dragging and sleeping for 10 hours at a time. It's like I can't get enough sleep to 'satisfy my body'. The pain in my groin/ hip flexor area has gotten progressively worse and is now painful to a point it impacts my daily life. I've been doing yoga for 20 years and now can't even sit indian style or cross my legs, it hurts to cross my legs, to sit to drive, and some days even hurts when just walking. The right side of my abdomen is swollen all the time (more on the right) and my groin area is swollen on that side, as well. I have also lost almost 20 lbs since March, it's April now. I feel like eating is a chore now and have to really focus to make sure I eat... I get full very quickly and it is difficult.

The first weekend in April, I forced myself to do a light trail hike with my oldest son and had to stop along the way, because it felt like something was painfully twisting something inside my abdomen and hip flexor area. I should note, nothing ever slows me down. I have an extremely high tolerance for pain, almost dangerously so. The best example I have that would give perspective here, is that I drove myself to the doctor -after my water broke (after I finished cleaning my kitchen)- when in labor with my second child. I didn't even realize I was in labor, I went because my back hurt and I was leaking fluid (water). My midwife almost had a heart attack when she examined me... For anything to 'stop' me, I started to get worried and made a doctors appointment the next morning for late that afternoon.

I went into my regular gyn office for fatigue, pain and tenderness, swollen abdomen, and weigh loss. I barely got in and was the last appointment of the day... The nurse didn't weigh me, she could have to compare for the weight loss since I was just there in January. The doctor examined me and did an ultrasound which revealed two cysts on my right ovary... I had explained to her that I recently went through a stressful time and she just really focused on that and told me I needed to relax and let things go. I wasn't meaning I was still stressed about it, because I'm not, just that it happened and could have contributed to my current health. She said she was ordering a CA125 test for me, but then I ended up being kind of rushed out without it happening- just being reprimanded for being tense (I was nervous) and told I needed to let things go. My level of pain was not even addressed, no solutions were given, and I was told to just come back in a couple months to have them checked again. At the time, I didn't know that the CA125 was a cancer marker test... How do you forget to do a cancer marker test on your patient after ordering it?

Once I figured out what that test was (google) I had a doctor friend draw my blood and run it. She said it came back within the normal range... I know the test isn't always accurate though, especially in early stages. I know I didn't have any growths in October when I had my IUD out and they seemed pretty small to me (I'm not sure what they measured).

The reason I am concerned is because nothing ever slows me down... I will work all day, then go rock climbing at night. I just feel like something is wrong... There is no reason for my lymph nodes to be so painfully swollen without any other infection present. The pain and fatigue is relentless and I am so frustrated with it. I am closing my shop because I physically can't keep up and obviously need to resolve my health issues... But, I don't know where to go for someone to listen to me. I tried my primary care doctor but he just kept saying, this wasn't his area of expertise and wanted to run a thyroid panel (which I did). I also had him run a CBC... but he didn't even examine me. He wasn't concerned about my weight loss at all... or the pain... and said sometimes your lymph nodes can swell from shaving!? I haven't had any infections- my gyn said there are no signs of anything bacterial, viral, and no yeast- nothing.

Has anyone had an experience like this? What did you do? Living with constant pain and fatigue is not an option for me... I can't even sit correctly because it almost feels like I am sitting on something. Not to mention, I know it is very rare, but I want to know for sure if I have early stages of cancer or not. I know I seem young and healthy because I live a healthy lifestyle- but I now weigh about 108 and am 5'7", that is not healthy. I feel so weak, like I have just lost all my muscles and strength. I'm just sick... and need answers. I'm about to just make an appointment at the Mayo clinic so I can get someone that wants to figure this out and solve it...

The only cancer that I have in my immediate family, is bone cancer.

Any help and advice is appreciated!! Thank you so much!

Nat
9 Responses
667078 tn?1316004535
I am no doctor but I think your symptoms need further investigation. The GYN should have done a pelvic/rectal exam to feel your ovaries or for other growths. If it were me I would try to get an appointment with a GYN/oncologist. They deal not only with cancer but with complex cases. I would take my ultrasound report and c/d with me to save time. Or I would get someone to do a CT scan. It might not show any thing either. My gyn missed my cancer for years.

All this said you have a 1.4% of ovarian cancer. What concerns me is you have some of my symptoms. I was losing weight then I started throwing up. They thought I had double hernia because of my tender groin.  They took my gall bladder out because of my abdominal pain. But the pain did not go away.

Ovarian Cancer is the most missed cancer there is. I hope you do not have it. I was one of those patients who did not insist. I struggle in silence. I wish I had pushed harder with my doctors. Afterwards they were like that was so obvious why did we miss it? Tell them point blank I am concerned about ovarian cancer. If they do not monitor you closely i.e. have ultra sounds again in three months, etc. I would find other doctors.

Alex
13459739 tn?1430327101
Hi Alex,

Thank you for you reply... That is what I was thinking. While I understand the statistical chances are low, there are symptoms. The issue with my lymph nodes in my groin concerns me so much because it has gotten progressively worse, for no apparent reason. It also seems like it is inside my very upper thigh... The whole side of my abdomen, groin,hip and back area hurt. It almost fells like I'm sitting on something when I'm sitting down, just never comfortable. The only thing that showed on the ultrasound she did initially, was the two cysts on my right ovary. I don't know if those ultrasounds would show anything in the bones or colon though... The pain and fatigue is just relentless, this isn't me... I can't shake it...

They didn't ask me anything about my colon or digestion... which has slowed to a crawl. As athletic as I was, just a few short months ago, I would 'go' at least twice a day... not anymore... and I am almost completely organic vegetarian, drinking green smoothies, vegan protein... there just isn't a logical explanation.

I don't understand why they don't listen to me... I work with cancer patients and families all the time- and I am normally so strong and healthy...

I am trying to get an appointment tomorrow with a local gyn oncologist... I also found an internist that did her residency at the Mayo clinic in Jacksonville- maybe she could help?

Thank you,
Natalie
667078 tn?1316004535
Keep me posted. I think Doctors are so used to dismissing women"s complaints. I am very healthy too. My` PCP used to roll her eyes at me until they found MS and then stage 3c ovarian cancer. Now she makes me an appointment right away.` It is great your over all health is good. For me I have bad genetics. I have the BRCA 1 mutation.

Alex
667078 tn?1316004535
I just wanted to say I know you must be scared. That is normal. Every case of illness is different. People are not statistics. If you do any mindfulness with your yoga that helps a lot for the worry.

Alex
13459739 tn?1430327101
Thank you... I appreciate that :) I will keep you posted for sure. I'm hoping to get into see an oncologist this week...
13459739 tn?1430327101
I know exactly how that feels... My doctor actually suggested I go ahead and rock climb, that it would help me 'relax'. She doesn't even understand that would be very painful right now...
13459739 tn?1430327101
HI Alex,

Did you find a gyn oncologist in your area? Or, did you try to go somewhere else? Like researching the Mayo clinic or others... I have been trying to find someone that has experience with early ovarian cancer. It seems like many are there to treat you after your gyn has already diagnosed you?

Thank you,
Natalie

667078 tn?1316004535
I switched I detailed it in your other post. Most doctors will take your ovaries and may or may not suggest six rounds of chemo. The chemo is rough but worth it. Being supported while in chemo is important. You should not throw up. They have drugs to help. The hardest thing for me was keeping weight on. It is important. You need more calories during chemo. My first hospital gave chemo and that was it. I got dangerously anemic, I threw up all the time, I was dehydrated, and way under weight. I was termed failure to thrive by the new hospital. They hospitalized me and gave me fluids and blood. I learned the hard way. I just hoped it would get better.

Alex
13459739 tn?1430327101
Hello, I hope you are doing well and having a good day...

First of all... Thank you so much for taking the time to offer your help, advice, and experience. I greatly appreciate you :)

I am trying to keep my body as strong as possible since I may be needing every ounce of strength soon... I don't know if I mentioned, but I am a chef. My business is pretty focused on the healing aspects of food... a lot of molecular nutrition. I don't know how much you have focused on that to support your treatment, but it can be a very valuable part. If you ever have any questions or want recipes, please let me know.

For myself... the eating is getting hard. I am drinking two 20 oz super clean vegan protein shakes (w/ vitamins and minerals) a day where I add coconut oil for extra fat.. Then a couple 40 oz green smoothies w/ aloe, ginger, tummeric, chia, berries, kale, spinach, oranges, redgrapes, other fruits and veggies... I eat mostly vegetarian, meat would be way too much right now... Everything should be going right through me right now but it really isn't. It isn't a digestive issue, it's just painful and pressure by the time it gets to my lower abdomen. It's so strange.

The nausea from chemo would be pretty brutal for me because I have a genetic inner ear condition called Meniere's disease... the nausea meds prob wouldn't help me much :/ I was told that I would be on medication 2x per day forever, but have been able to control it with my diet/lifestyle. Though, I have lost a significant amount of my hearing early on before I was diagnosed and got it under control... I only have to take medications several days out leading up to a flight- before I have surgery (because of the imbalance of fluids and anesthesia)- or,if I get a vertigo attack... But, I'm pretty strong and I really just want my life back right now...

If you find yourself feeling dehydrated now... coconut water is a great source of electrolytes, it's like natures sport drink- but without all the chemicals in it...
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