Hi everyone, some much needed advice please

Hi everyone, I havnt yet been diagnosed with endo. But im fully aware I suffer from alot of the symptoms (bad lower back pain, tiredness etc). Im still young but am terrified of the thought of having it and the thought of being told im infertile also terrifies me, I cant bring myself to go to the doctor at the thought of it. Could anyone please give me some advice or their experiences. Thankyou.

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  • I'm 18 and I was just diagnosed. For me, it feels better to know I'm not crazy and have that diagnosis.

    How badly do your symptoms affect your daily life? Maybe it would be a good idea to rule out other possibilities?

    Take care x

  • Did they suggest any possible ways to lessen the chance of unfertility?

    other than being tired pretty much all of the time, nothing else really. When my period comes I suffer severe lower back pain.

    I want to know but im terrified.

    Thankyou so much,

    All the best x

  • Hi there. I know it's scary but it feels a lot better knowing for sure what is making you feel ill. If you leave it and you do have endometriosis it might get worse. I suffered for 6 years before getting diagnosed and I would much rather have known what was wrong with me sooner. You shouldn't have to deal with these symptoms so I really think you should visit your doctor and ask a family member or friend to go with you if you're nervous. Also, lots of women with endo can still have children so try not to worry about that. Whatever the problem is it's best to try and work out what is causing you to feel like this so the sooner you visit your doctor, the sooner you can find out and hopefully feel better! I've written my experiences on my profile if you want to have a look. Take care x

  • I wasnt aware that the endo could get worse. Thankyou I appreciate it alot. I will definitely have a look at some of your experiences. Take care x

  • Please do see your Doctor, the process of getting a diagnosis and even persuading a doctor that you need a referal to a gynaecologist can take absolutely ages.

    The longer you leave endo, the more likely your fertility will be compromised by the damage done inside. Not just by endo itself, but by scarring where the bleeding from endo has repeatedly irritated the nearby organs and tissue that the monthly bleed lands on this causes your body to grow a sticky (super glue strength) cushion of protection called adhesions and even if endo is nowhere near your ovaries or fallopian tubes, the adhesions and scarring itself can grow in all 3D directions and can block the pathway of any ova reaching the uterus.

    The sooner you are diagnosed and the endo removed which stops the chances of it bleeding inside you and triggering adhesions, the better for any chances of saving your fertilty.

    You might be lucky and the current patch(es) of endo if you have them, are not growing anywhere near the ovaries and tubes. They can grow anywhere, might be on an appendix, our bladder, colon, bowel, ligament, peritoneum etc and not threatening your fertility but the only way to find out is for a diagnostic lap op (key hole) to see what is going on in there already, and remove any endo that is found.

    They can also squirt dye through your fallopian tubes to see that they are still clear tubes.

    If it turns out that already your tubes are blocked, then the sooner you find out that you only chance for a baby will definitely need assistance of IVF type procedures to get passed the blockage, means you can start saving hard for IVF cycles, building up a fund for the business of baby making when you are ready to start a family.

    Endo doesn't prevent you ovulating, it only blocks the pathway of the ova, so even with a blocked tube on one side, you'd still be in with a chance to get that egg to the uterus on the other side, but if both are blocked you know where you stand and what you have to save up for.

    Furthermore endo is a progressive disease. It does spread and it can literally grow on anything in the body it wants to grow. it doesn't know it isn't in the womb where it is supposed to be, so every month it will react just like the womb cells do, and will bleed ... potentially spreading more endo cells to new locations.

    In my case it took 29 years for me to get diagnosed and by then the endo had caused a catastophic mess inside me as you can imagine. BUT despite all of that and that one ovary had to be removed my fallopian tubes were both still clear and on one side there was still the potential for getting pregnant. It really is pot luck where it grows and what direction the damage caused by endo decides to grow.

    It is certainly worth having existing endo removed come what may, and also pretty useful to have advanced warning about how you need to plan for babymaking later on.

    Don't be scared, endo affects more than 10% of all girls and women. The biggest hurdle is getting your GP to listen and then getting referred to a gynaecologist. It can take repeated visits to the Doc and a host of tests to get through before they agree to a surgery and that may take months at least and possibly years.

    The sooner you get the ball rolling the better. UK average waiting for a diagnostic surgery is still 7 years. Don't ever give up, just because your GP may not be sympathetic, move GP or to a new surgery entirely and keep on pushing for something to be done to diagnose your symptoms. Very Best of Luck, both with getting a sympathetic GP and with the checks on fertility.

  • Thankyou so much thats really helpful. I have booked an appointment with my GP and hopefully can start the process of getting it all sorted.

    Again, thankyou

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