My Ovacome
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Tired of being in pain with NO answers

Hi everyone,

Where to even start...I guess I’ll start from the beginning of this whole mess! I’ve always had very irregular and very painful periods. They would leave me in fetal position for HOURS crying and almost screaming. Then things started to get weird. I started going 65+ days between each period and became very bloated. I went to the doctor and they put me on birth control. Fast forward to a year later and I’m still extremely bloated, but now can’t eat very much without feeling full. The ultrasounds were normal, but the doctor felt something suspicious on my right ovary. 4 months later, I went back because I started Experiencing pain in my right side and was very fatigue all the time. Ultrasound was normal again. Last week I had To go to the ER for pain in my right side again, diarrhea, and a lot of swelling that can be seen when I’m standing, just on the right side. A new doctor did a pelvic exam and said my cervix looked “angry” and was bleeding. They also saw that my right Fallopian tube was very swollen. They said it’s most likely an infection. I’m not sexually active, so it’s not an STD. Since coming home, I’m so tired (have to take 3 hour naps after doing something simple as going grocery shopping), pain in the right side comes in waves, swelling is still very visible, and my back hurts very badly. I’m wondering if anyone else has had these symptoms before. I just want answers already and for this pain to go away. What could this be?

Thank you!

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Hello,

One of the shitty things with ovarian cancer is that we all present with such different symptoms, My only suggestion is to use the Ovacome Support line - freephone 0800 008 7054 and chat to Anna, the specialist nurse / Support manager. Her background experience and knowledge may help you on how best to move forward. You certainly sond as if you need some otehr angles to explore.

Good luck and hang on in there. Take care.

Lesley

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Dear Louise,

Your condition sounds awful and your treatment so far sounds worse.

From the time of your post, it looks like you are in the USA. Are you?

I am fortunate to live in the UK with National Health and in a location next to a good hospital where my treatment has been excellent.

That bloating is one of the first indications of Ovarian Cancer, but it is often ignored by regular doctors. It is caused by fluid secreted by the cancer and is called Ascites. It makes you breathless, and keeps you from eating and drinking properly.

I was lucky, because when I became so ill and weak and could not keep food down, my husband called the emerging services ( much to my horror), but then the EMTs took me in to hospital, bypassing any waiting, and the first doctor who saw me recognised the swelling, listened all over with a portable ultrasound and sent me up for a CT scan immediately.

He also did a blood test looking for a Cancer Marker called CA-125, which can be a brilliant indicator of what's going on.

I wasn't happy with the news, but getting a quick diagnosis of Ovarian Cancer, being admitted for stabilisation, further testing mand consultation with the team, meant that I could start treatment right away.

You are so sick right now, I urge you to call an ambulance and get yourself into hospital. You need a CT (cat) scan and the CA-125 blood test right away.

I am so sorry that this torture has already gone on for so long. Try to have a close relative or friend with you to act as an advocate on your behalf.

Good luck and I wish you all the best,

Laura

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I totally agree with Linda. I live in the USA 🇺🇸 and they damn near missed my OV CA. Thanks to a sharp Radiologist, with a keen eye, in a Tumor Board meeting, it was deemed suspicious. The Dr. said, "I don't like how her right ovary looks for a post-menopausal woman of her age"! Boy the ball started 'rolling' after that. Turned out it was Stage IIIB OV CA. Get your butt to the ER and be the STRONG ADVOCATE you must be for yourself. PUSH FOR ANSWERS even if you feel too ill to do so. I would also suggest you take someone that is close to you with you. Sending hugs and prayers 🙏

Helen

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So sad for your suffering, you must ask for a scan via your GP that is the only sure way if finding out. I had 4 gp appointments before something was done it’s not easy getting a referral! I also had to ask for. Tumour marker blood test ca125.

Best of luck, let us know how you get on

Jackie O xx

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It may be worth finding Ovacome's symptom tracker- there is a short and longer version. This enables you to log symptoms for both frequency & persistency and generates a print out to share with Drs.. it sounds like you're having an awful time of it. Don't give up on getting the diagnosis and treatment you need... it may not be be as bad as you fear, but so important you get answers.

It may also be worth copying your post to the 'Ask Eve' HU forum as well (its for all gyny)

Very best wishes, Sx

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