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Could this be endo?

Posted , 4 users are following.

Gemcc23
Gemcc23

Just looking for advice as doctor wont refer me on further. i have heavy periods, pain when going to the toilet, painful periods, cramps, pelvis pain, right sided pain, bowel problems, fatigue, ive got severe leg pain from nerves (doctor did confirm this) but he couldnt give a reason why a 23 yr old would have this. i have 2 kids and doctors wont give a smear test, all this has been happening for two years after giving birth to my youngest.

im so worried something is going on but doctors wont do anything as they think its unrelated, ive had a ca125 test before and it was just above average but they said it can be normal for my age.

Thanks for reading

0 likes, 5 replies

5 Replies

  • Mandy4795
    Mandy4795 Gemcc23

    Posted

    Hi,

    That definitely sounds like it could be endo. As you probably know, or will hear/read on here a lot, it's different for everyone. However, your symptoms sound a lot like what I had last year.

    Why is your doctor refusing to refer you on? Is this your primary care doctor or an OB/GYN? My (former) primary doctor didn't take me seriously. I had to demand a referral to an OB/GYN who was more helpful. But as far as I know, you don't need your primary's permission. Since you've had kids I'm wondering if its your OB/GYN telling you this which is sad. My GYN wanted me to try bc pills and wait it out. I had to pretty much throw a fit and demand that they do the surgery to check for endo, and I was right, it was there and they removed it and I've been better since. All this to say, be aggressive and proactive. I am so shy & timid but had to really be firm and stern. Doctors, while great, are there to serve YOU. Please keep us posted/ let me know if you have questions

  • aitarg35939
    aitarg35939 Gemcc23

    Posted

    Hi Gemcc

    I'm sorry for all that you're going through, and very surprised that you were given a cancer antigen test -- which is not even 100% yea/nay on cancer. By smear test i assume you mean the Pap smear? The only 2 reasons that i can think of for your doc to refuse even that is that s/he's some kind of religious fanatic imposing his beliefs on you, or you're in the States on an hmo where doctors are paid to not do tests & not refer to specialists?

    Mandy is correct: you're going to have to be very firm with doctors. If you can get a supportive person to go with you when you go back, the doc may be more reasonable. Many of them behave sooo much better when there's a witness for the patient.

    Let us know how it goes.

  • charlotte1824
    charlotte1824 Gemcc23

    Posted

    very much sounds like endo to me, could also be cysts (endo cysts or otherwise). They should send you for a ultrasound scan which isnt a great costs to them and a gyane to interpret the scan results.

    a higher than normal CA125 test can actually be indicative of endo.

    Like the others said you need to demand to see a gyane. If your in England you can make a complaint to Pals about your GP and im sure you will then get a referal or see a different Gp.

    Good luck

    • Gemcc23
      Gemcc23 charlotte1824

      Posted

      i have been going thru this for nearly two years and have had two scans but nothing showed up thats why they said its very unlikely and my doctor said the same, but ive heard endo doesnt show up some times on scans? hes gave me mini pills for a month to try but its just covering the pain up, thanks

    • charlotte1824
      charlotte1824 Gemcc23

      Posted

      Endo does not show up on ultrasound, the only definitive way to find out is by going for a laparascopy.

      If you can afford to have a consultation privately then they are likely to write to your Gp and ask for you to be reffered back to them for surgery on NHS

      Failing that then you need to demand to be referred.

      The gp may be trying to save you an operation as the mini pill is quite often a way to manage endo, it doesnt stop it but often it stops ovulation so it calms the symptoms down and i think slows down the endo.

      I used to have the injection and had no periods and no pain. After my son i decided i didnt want hormones anymore as they made my mood erratic and ive had massive cysts caused by the endo and will be having a second lap this year. 1st lap made no difference to my symptoms.

      There is a ton of information on a US drs site called dr seckin, google that + endo and you will get lots of information from there.

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