Would you push for more answers or be settled by this?

1. Went to GP for worse than usual bloating. Had a blood test and my CA125 level was 35 (normal but at the normal limit). Ca125 is a cancer antigen test for ovarian cancer. 2. Doctor phoned me and said it's normal but on the borderline. She said many things including just being on your period can raise it. But she would send me for an ultrasound to be sure. 3. Ultrasound showed a cyst and they told me to come back in 6/8 weeks to see if it's gone. 4. I went back and they said it was still there and was filled with blood so I was referred to a gynaecologist. 5. Gynaecologist said he would do an MRI. He reassured me that he wasn't concerned about the CA125 as so many things raise it. 6. MRI came back to confirm the cyst was there and said it looked completely fine. He also said it looked like a cyst that you would get with endometriosis. He then said its possible I have adenomyosis too. 7. He repeated my blood test and CA125 level was going down and was 32. I felt a lot better but the wording on the report was worrying me still. He kept using phrases like 'possibly' and 'looks like' so I didn't feel like I had an official diagnosis. I spoke to my GP today and she was so rude. She basically told me to get over it. I've been told it looks fine. Do I push for a laprascopy? Or does this all sounds reassuring? I'm a worrier so tend to not let things go.

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Push and go private

Do you still have the presenting symptom, ie the worse than usual bloating?

Wanted to add my symptoms aren't awful like I've seen other people experience. I do get a lot of bloating and heavy periods - Sometimes with clots. But otherwise seem OK

Also consider changing to another GP. There’s no reason to be so abrupt with you. This is a valid concern and something that it’s understandable to be anxious about. Even if everything is normal, is understandable for you to worry. And being abrupt doesn’t help with that.

Do you think you have endo? Doctors never use absolute language. Everyone is "looks like" etc

Castor oil packs and intermittent fasting. If you wanna push the boat out opt for a ketogenic diet. By the time they scan again it’ll either be shrunk or gone completely.

Medics are no longer allowed to say ‘it is such and such’ or its not such and such’ in written notes and communications as if they say it’s definitely something in writing and it’s not they sued from here to kingdom come. The only way they can give a definite answer is to have confirmatory lab results. However if you still aren’t comfortable you can’t request a second opinion but via the NHS as you have already been seen and assessed as per pathways you would no longer be on a priority wait list so you may have a significant wait

@Rosa no it settled down a bit to be honest but I do still bloat. But have done for a while

@Ella oh I see. Yes I think i may have it as I've had infertility too and it was unexplained. I and two children by IVF. That may finally be the answer to that.

I understand the worry as I’m a worrier too. As others have said healthcare professionals can’t use absolute language, unless they have a definitive result. They have pretty much told you that there are other reasons for the slightly raised CA125 level and not to worry about it. If you are worried though then go privately.

Endometriosis can only be diagnosed from a laparoscopic surgery. So that's why they are saying looks like because they can't officially diagnose. But I would go back and push or get a second option

@Mia 🌼 Yeah I'm torn because I don't really want to go through surgery especially if my symptoms aren't severe. But the CA125 blood test is what was worrying me. Even though it was normal it was still on the highest range of normal. I'm confused and don't know what to think. Might be best just to push for the surgery.

Endometriosis and adenomyosis can be devastating diseases. I was in your shoes for a couple years before taken seriously and when they finally did go in things were so bad. Stage 4 endo in bowel and fallopian tube twisted bc left ovary was attached to bowel, it was on liver etc etc. it took two surgeries and spent 4 years in medical menopause and a total of 10 years of infertility. Idk if you are planning on more children but they should be willing to do as much as possible to protect your fertility and LBH it shouldn’t even just be about that. Also, trust your own intuition and body. Don’t panic but I think seeking a 2nd opinion of a specialist is a very good idea. GPs and gyn/obs unfortunately don’t know enough about these diseases. Check out dr. Andrea vidali (@endometriosissurgeon on ig). Lots of info and lots of payment assistance. That’s who I’ll be seeing next.

@Kathryn I've always had unexplained infertility and had both my children through IVF. But no one could ever tell me the cause. I don't feel like I'm really suffering. I have spoken to others and their experiences have been horrific. Having said that.. I'm wondering if I've had my symptoms for so long that they seem mild to me. I'm not sure. If I'm told its OK then part of me wants to just keep an eye on it and if things get worse then try to escalate. But at the same time I feel like I want confirmation now so I can process it and do what I can to help myself.

It’s so frustrating when the doctors dismiss your concerns instead of trying to explain the reasons why they feel you shouldn’t worry. Also, why run tests like CA125 if they then just dismiss the results anyway. I’m the same as you in the sense I like to push until I have absolute peace of mind. Your health isn’t something that you can take a gamble on, and you’re the only person who knows your own body and symptoms! Hope you get some reassurance and answers x

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