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Thread: Need a plan, in an ovarian cancer spiral

  1. #1

    Need a plan, in an ovarian cancer spiral

    This is complex, and I almost think it doesn't necessarily belong in the female health issues section, but I will put it here. I know it will be long, and I think it might be more important to just write it out than for anyone to read it and respond.

    I am 44 years old, and have three kids. I posted before about having an obsession with breast cancer, if you look at my post history you can see that post. As I described, what happened was that I have had TONS of call backs and biopsies and breast testing, and now that has really messed with my head and I find myself believing I will have breast cancer at any moment. In two weeks I will be going to have my yearly mammogram and a follow up ultrasound of a suspected fibroadenoma. I have switched to a facility specifically because they give same day immediate results. I have a therapist I have processed this with, I have a friend going with me, I felt settled about that (but it is in the back of my mind).

    What I didn't post about before was that I actually had all sorts of medical trauma last year- after a trip out of the country, I came back with a serious GI thing and my feet and legs went totally numb. The funny thing is that I first was sure it was health anxiety, and tried to cope with it that way. It eventually became WAY terrifying, and after many tests and specialists I figured out I have pernicious anemia. The GI thing depleted the very last of my already low B12, and I had to have daily B12 shots for a period of time to resolve my symptoms. I now have shots 2-3 times weekly (my husband does them at home) and will have them for life. I am fine with that, my neurological symptoms are almost resolved, and I am just relieved to have an answer. The tricky thing is that I had been managing my anxiety with extensive physical exercise, and when I could no longer exercise due to the neurological symptoms, plus I had true medical weirdness, I lost control of my anxiety. I am now exercising again, a lot, but... it is not enough.

    More about last year- in late September, I had my pap smear, and I have never had a call back, and I had no anxiety waiting for results- in fact I didn't even remember I had a pap smear until my doctor called me and said I had an abnormal result- atypical glandular cells, HPV negative. This is a pretty rare result. I ended up having a D&C, hysteroscopy, endometrial ablation, uterine biopsies, etc. etc. under general anesthesia. My doctor found nothing, saw nothing, said that it was just something that happened. My doctor told me not to worry about it.

    Then I had some weird labs, also a long story but my folate was sky high, and I was still having GI issues, so my doctors suspected SIBO. I did test positive for SIBO. I had SIBO in 2017, I was not surprised to have it again after the travelers diarrhea issue. I have IBS, have always had stomach issues. My doctor prescribed a specific SIBO antibiotic that is about $2,000, my insurance wouldn't cover it and I tried to figure things out over the last few months. I am just now expecting the antibiotic by mail in a few days from another country. So I have untreated SIBO- severe gas, bloating, diarrhea, etc. I will be very happy to be able to start the antibiotics in a few days. Because I have the GI issues, the SIBO, the B12 deficiency, etc., my GI doctor wanted me to do an endoscopy and an abdominal CT (the kind where you drink the barium solution). I agreed to do the tests as long as they could be before the end of 2019 as my insurance deductible was met- so I had the tests on 12/23/19, and 12/26/19 (it was a great Christmas). Even around the time of the CT, I was having some weird irrational thoughts, and due to abdominal pressure and sensations I was sure they were going to find a pelvic mass. (???). I was positive. The CT scan was unremarkable, a few tiny ovarian cysts that were just normal cycle type things, some inflammation as far as GI things, nothing surprising. The point is- this CT scan of my abdomen was SIX WEEKS AGO. Pretty recent.

    Last week exactly during ovulation, I had a lot of pain. I always have pain when I ovulate, always have, always know exactly when I ovulate. I realize I still have a lot of abdominal pressure due to the untreated SIBO, but something in my brain when haywire and I started worrying. It came into my head that the doctor never told me when to follow up on my pap smear, and then I was thinking I was hoping it would not be close to the mammogram, and then I started to get more and more anxious about all of the abdominal sensations and messaged my doctor. The office said I was, in fact, due for a repeat pap, and I should come in the next month or so. I decided to go in the next day, yesterday. I had the pap and will be anxious for those results, but I also talked to the provider about my current pain following ovulation (which has now been 4-5 days long). She said she was not worried, take Advil, and if it continued I could some in for an ultrasound. She said she was not worried about it. She looked at the recent CT scan, and said those cysts were normal cycle type cysts, and wouldn't be causing any issues.

    Yesterday, I went into a spiral. I Googled. I spent SIX HOURS reading stories about women diagnosed with ovarian cancer. I decided I have ovarian cancer- the gas, bloating, pelvic pain, urinary urgency but then not producing much urine. I am trying to tell myself that ovulation pain is normal for me, and that I DO HAVE diagnosed IBS and SIBO and GI problems, and this is the cause of my symptoms, but it is not really working. My kids were trying to get my attention last night, and I could not stop looking my my phone and reading these stories. Hours. I know that this was NOT the correct thing to do- for myself, as a mom, none of it.

    Now today, the anxiety is still HIGH. I am trying not to contact my doctor's office to request an ultrasound. I was just there yesterday, and they did not recommend an ultrasound then. I am so angry with myself for being in this situation. It does not help that all of the ovarian cancer stories are about how the symptoms are so vague and that you should keep pushing your doctor if you have a feeling. Some many things call it a disease that "whispers". As a person with health anxiety- ha. I always have a feeling that something terrible is happening. I also do not want to spend money on unnecessary medical tests- 2/3 of my kids need braces this year, and I don't need to spend $500 on an ultrasound that is not currently recommended. On the other hand, I am afraid that until I have the ultrasound, I will believe I have ovarian cancer. All of it is so depressing- this is not what I want for my life, I hate living in terror all the time.

    I decided that posting here is better than Googling, better than contacting my doctor, and might help me get things a little more in perspective.

  2. #2
    Join Date
    Aug 2018
    Posts
    92

    Re: Need a plan, in an ovarian cancer spiral

    Oh dear. I felt like I was reading about myself. I honestly have never read something that rang so true in all of my life. I have had many wonky things wrong with my breasts and I now have a complete and utter fear that they are ticking time bombs. I am also in an OC spiral right now as I have had some hip pain (dull and comes and goes, but....) and on and off pelvic jabs. Right now I am around ovulation and I know some of the pain can be from that, but the hip pain preceded ovulation. I spent all morning trying to get the most immediate appointment and hoping they can give me an ultrasound that day as well. The things is, just like you, I also had a CT last year in May and a TV Ultrasound in April of last year. I keep thinking, "they saw nothing then.." but then, like you, I think, well it has been some time since those scans and anything can happen. And, I have read so many stories. I was shaking in bed a few days ago after reading story after story. My family went to lunch last weekend and I went in the bathroom and googled OC cancer statistics...at the restaurant...in a public stall..while my family was ordering drinks and appetizers. My husband was livid. I do not have any advice, per se, except to let you know that you are not alone. There is likely nothing I can say that will make you feel better or more comfortable. I know, because I feel like until I can have that ultrasound, I have myself convinced. I have wasted my morning workday on this. I am also on the verge of turning 43 and I have to think a lot of this...the sensations, the anxiety, all of it has to do with perimenopause too.

    Are you in counseling? I am, but I have still not gotten to the place where I can put things into practice. I visited my doctor yesterday and he wants to do a full lab work up and then discuss medication. It is so hard, I know it is. But, I suppose we have to remember that OC is extremely rare and that anxiety is not. I say suppose because I know I will continue to worry until the pain ceases (but I feel everything) and/or I get that ultrasound. But how long will that peace last?

    And, just a funny antidote, I have tennis elbow from lifting weeks ago. It is still sore, but I pay it no mind, but this hip pain/pelvic pain, I have it down to sinister reasons. Sinister reasons I just freaked out about last year. Anxiety is the beast that just keeps coming back from more and I am all in with "here beasty, have some more brownies."

    I hope some other, level headed members chime in.

  3. #3

    Re: Need a plan, in an ovarian cancer spiral

    Yes, I am in therapy- and I have a MSW and used to be a therapist, and worked in mental health for 15 years. That doesn't help me. My therapist is very good, and I have been seeing her for a long time, but she is a trauma therapist. I have a significant history of trauma, and I started seeing her when my mother was dying in 2018. While my (abusive) mother was dying, I suddenly had ALLLLLLL of these physical symptoms- and at that point, I really became in touch with the relationship between the mind and the body. Then last year, all of the actual medical things, and all the testing, and the B12 deficiency occurred, and that made the whole mind body thing very confusing- I get that it is still very important, but there were these physical things that happened, and my view of it just got muddled. One problem with my therapy is that I think my therapist sees me as very bright and educated in mental health, and so possibly she expects that I know some things and she doesn't need to tell me- but just because I know things, it doesn't mean I can always make myself do the right things.

    I have a long history of taking medication, but I weaned off of all medications a few years ago. I am taking a small amount of xanax right now in the time leading up to my mammogram, but in general I do not want to take medication. I was able to solve so many of my mental health issues through exercise, and I would like to do that again, but that involves pushing through situations like this . I also know that I am going to have to have a ton of breast testing and surveillance, and lots of pap smears for a while, and I would love to figure out a way to not totally fall apart while all of that is happening.

    And since I posted, I called my OBGYN's office and talked to the nurse, and basically made no sense. I don't even know what I said- I said I was afraid of ovarian cancer, knew it was not rational, didn't want an unnecessary ultrasound, but wanted to know when I should consider the ultrasound. The nurse really did not know how to deal with all that, said she would talk to the doctor and call me back. I am ashamed I made the call, it made no sense.

    And yes- I can SO RELATE to the going into the bathroom to Google cancer statistics. I would totally do that. Last night my 11 year old said, "why don't you get off of your phone and read a book." And my poor husband. I am so frustrated with myself right now.

  4. #4
    Join Date
    Feb 2016
    Posts
    1,207

    Re: Need a plan, in an ovarian cancer spiral

    It appears that your CT covered your abdomen and pelvic areas, so you certainly haven't got OC it develops slowly over many months or years. There is also a blood marker that you can have tested (CA125) which is specifically related to ovarian issues, so it may be helpful to have this. I had a benign ovarian cyst removed when I was 33, it was the size of a tennis ball !!

    I had an odd result come up in a smear once which indicated high risk HPV and CIN1 but investigations showed just chronic cervicitis (benign inflammation) that's all! My gynae said that HPV can located anywhere within the vaginal tract.

    I've also had high B12 and folate which resolved once I stopped eating red meat and also went gluten free. My stomach and urinary issues are related to my autoimmune issues, I have CFS.

    It sounds like you could have some autoimmune issues going on especially as you have IBS.

    Have you had your bloods tested for autoimmune antibodies ANA/ENA's? Sometimes they can indicate what the issue may be. As you have IBS, it's better to go gluten free as gluten can often trigger inflammation in sensitive people who are gluten intolerant. Also coelic can trigger stomach and intestinal issues, I presume your Dr has already tested for that.

    All these things can certainly trigger anxiety, I know as I've had lots of gynae issues in the past. Take care x

  5. #5
    Join Date
    Mar 2014
    Posts
    129

    Re: Need a plan, in an ovarian cancer spiral

    I could have written that as well. I am also 44 and was convinced I had OC. I am still in the midst of trying to figure out what is wrong with me. I have all of those symptoms. The bloating, the urgency to pee, pelvic pains. The last 2 periods have been really painful. So I finally freaked out and went to get an utrasound, internal, external and abdominal. All with nothing remarkable but with bowel inflammation which surprised me because i was convinced it was a female issue specifically. So they sent me for a CT scan and again, nothing remarkable. Now the last thing to do is have a pap since I am due and I also have high risk hpv. I also had an operation to remove all the cells. The DNA test a year later came back hpv free. however i get myself all worked up as well. and since it has been 3 years i have to go back for another smear. I am freaking out a bit but I am sure if there was anything obvious it could have shown up on the internal ultrasound. Last week one doctor said he thinks its IBS based on everything he has seen. (which of course could be also a result of SIBO) My family doctor told me that at this age everything is unpredictable and in perimenopause can be an extremely frustrating time. It's good that you posted on here. Google is not your friend. I have just started to change my diet in hopes that these issues will subside along with watching hormone balancing videos on youtube. It is so easy to freak out. I get it. My son is downstairs and I am up here having panic as well. Please keep us updated on how you are. I swear my poor husband I am sure wonders if there will ever be a day when I am completely sickness free. i know this sounds terrible to say but I have had enough of my whole reproductive system i wish this was all over an done with. I feel like a ticking time bomb. If there is anything odd about my periods I am on high alert. and that is the problem with google, all roads lead to cancer. Again, i totally get it. Most of what you wrote i can absolutely relate to and on the low anxiety part of my brain is saying this is what happens at the mid 40's range and it sucks.

  6. #6

    Re: Need a plan, in an ovarian cancer spiral

    Today I was super anxious knowing that I could possibly get my pap results- not likely, but possible. While I was on the treadmill this afternoon, I got a electronic message that my results were back, all good, HPV negative, no further testing recommended. I mostly just feel exhausted with it all, and still feel like I am waiting for the next test or thing to happen. Earlier in the day while I was grocery shopping, I was just looking at everyone, and how we are all just living life waiting for health issues to happen. Especially women, I feel, have all of this screening and potential for cancers and issues and anxiety about testing. And I am thinking about how eventually my girls will have to go through all of this. My 11 year old daughter was having me feel her lymph nodes last night, and said she has been asking friends if they can feel bumps in their necks. Ugh. Living a life where all you think about is health issues is not much of a life, and I don't want that for my kids either!

    I am still having a lot of pelvic pressure/ twinges/ sensations, and now lower right side back pain, so of course it is clear that if the pain is moving around, it is probably all anxiety. It is also clearly gastrointestinal, and I REALLY wish my antibiotics were not parked in customs so I could treat this SIBO. Hoping that next week I get them and can start them, and right when I finish those I will have my mammogram and ultrasound. I would love it if for once I could go to a breast screening and then just GO HOME without having to do a biopsy or ultrasound or whatever. If I could just have a few clear screenings, it would be more likely that I could feel like I am not just living life between medical tests.

    Thank you so much for everyone who has responded.

  7. #7

    Re: Need a plan, in an ovarian cancer spiral

    Quote Originally Posted by WiseMonkey View Post

    Have you had your bloods tested for autoimmune antibodies ANA/ENA's? Sometimes they can indicate what the issue may be. As you have IBS, it's better to go gluten free as gluten can often trigger inflammation in sensitive people who are gluten intolerant. Also coelic can trigger stomach and intestinal issues, I presume your Dr has already tested for that.
    I have had positive ANA results in the past, but nothing has clearly corresponded to any specific autoimmune thing. I have also had negative ANA results more recently, and it is not something my doctor wants to test any more. My mother had all of these issues- malabsorption, gastro issues, and MASSIVE anxiety. I have been tested for celiac, etc., LOTS of previous gastro testing. I have fructose intolerance, and of course the SIBO now. I also think that poor gut health doesn't help mental health much at all, so I really wish I could get ALLLLLLLL of it under control, of course!

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