Endometriosis UK
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I'm waiting for my first gyno app after being referred by my doctor. i would just like some information & reassurance really if possible

im almost 19 years old, have been told i have suspected endometriosis but two general practitioners. they have both been vague about what it is, so of course i turned to the internet & have been horrified by the word infertility keeps popping up.

15 Replies

I could have written this myself. I am 19 in a few weeks, and have my first gyneacology appointment the day after my birthday. My doctors have been very vague and have no clue what is going on, my last doctor said that they had done everything that they could to help.

I have been looking at endo365.blogspot.com.es/ which is written by an 18 year old sufferer of endometriosis, which is really helpful. Alice is really nice as well.

Hope you get answers soon


oh wow! talk about weird! thank you very much for the website! ill make sure to have a look! hope everything goes well with you. if you feel like you can, id love to hear how you get on. thanks for the help xxx


Yeah sure I have my appointment in 12 days, not that I am counting or anything. I will probably make a post about it, cause no doubt I will come out confused as hell



Please don't believe all that you read on the internet as I've scared myself loads some of the things I've read. It can be useful at times but it doesn't make everyone infertile. I have endometriosis and have been very fortunate to have two beautiful girls and I didn't have any trouble concieving. I also know other people with the disease too who also have children. Yes it can unfortunately affect some women's fertility it all depends where you have it and how bad but please don't be thinking it's everyone. Good luck with your gynae app remember to write questions down you want to ask.

Good luck x x x


reading this does help alot! its just that word keeps popping up. i know im a bit young to worry about that now but for the future. im going to try and wait until ive had my appointment before panicking anymore! ive already started writing things down, thank you xxx


I have also suffered since 12 yrs and am now 32...and I'm 8 mths pregnant!! They told me I would have trouble conceiving so I resigned myself to this. My periods actually stopped for 4 yrs aswell, they came back very infrequently last yr and I fell pregnant unexpectedly. Best surprise ever! Please don't despair loads of endo ladies have children so they odds are not as bleak as they seem. That said don't be lax with contraception if you aren't ready because chances are you may fall pregnant. It's a myth though that endo 'dissappears' in pregnancy as I've had a tough time with bladder and bowel issues. Xx hope that helps


congrats! its so nice to hear from someone that is pregnant with endo! yes ive heard the rumors about it disapears in pregnancy, i was told that was the main reason doctors tell you to get pregnant. all wives tales im sure. i really hope the rest of your pregnancy goes well and things carry on becoming good for you. yes it has helped, thank you xxx


No problem sweetie and thank you for your lovely wellwishes ☺☺


It certainly doesn't make everyone infertile. it's pot luck where the endo happens to be growing and what damage it does from there.

29 years it took for my endo to be diagnosed and operated on, and it was everywhere ..almost. i still had clear fallopian tubes and one ovary was still viable and working. the other ovary was wrapped in an endometrioma cyst and it and its tube were removed and thank goodness. It really was a troublesome beast. But the cyst problems on the left ovary didn't appear till i was over 38. I was given a scan when aged 38 looking for signs of endo and fibroids and some explanation for the heavy painful periods. It showed up nothing out of the ordinary except for the deformed uterus set up. 2 years later and i went in for a lap opon the cyst and the real mess was discovered and my op turned in to a big hole laparotomy. Scans don't give the whole story, but surgery will certainly give you a lot of answers as to how things stand at the moment.

In theory I could still get pregnant. I am too old, and I have deformity of the uterus which would make it a stupidly wreckless thing to do, but it just proves that inspite of severe endo/stage 4 it is still quite possible to not have the pathway of an ova reaching the uterus blocked.

And even if it is blocked both sides there is still IVF to try to by-pass the blockages.

Endo does not stop you ovulating, and it doesn't stop the uterus working.

Your still very young and when you have a laparoscopy to check for endo, ask the to squirt dye through the tubes to check they are still clear.

If they are already one or both blocked then you know where you are, and can start saving up knowing that your best chances of a family will come from assisted reproduction IVF type techniques. If you do have endo and its no where near the ovaries or tubes then you have just the same chances as any other woman would have of conceiving naturally. it would stillbe a good idea to save up a nest egg just incase you may need to use IVF, and if by luck you naturally conceive then you have a pot of money saved for the early years of the baby which will come in very handy.

Besides that in the 20 years ahead of you of fertility who knows what advances there will be in the science of fertility treatments. Things are developing all the time in that field.

the world's first IVF baby was born shortly before I started my periods and the endo symptoms began, and thousands and thousands of babies have been born due to IVF since then in my life time.


thank you for all of that information! i had to re-read this a few times to take it all in. i will definitely have to start thinking about saving for the worst case scenario, but i appreciate the time you took to write all this out! you have no idea how helpful this is to me. i will make sure to ask to squirt the dye through. one less thing to worry about i hope. i can not thank you enough for all of this! i really hope things go smoothly for you from now on xxx


I'm 25 and in the process of being officially diagnosed. I saw an emergency gyny in April and he did an internal examination and suspected endometriosis from that and my symptoms. He then referred me for an ultrasound to check for no cysts. Endometriosis will not show up on ultrasounds. The only way to know for sure is to have a laparoscopy (keyhole surgery), which is a day surgery job. I'm waiting for that now. Fertility wise though, don't worry about it for now until you have to. You may not even have to! I had a baby 6 yrs ago after a miscarriage, so it's definitely not impossible. The laparoscopy will give you a good idea of your level of fertility. I hope your appointment goes well! X


ive have an internal ultrasound and that showed nothing. but the doctor did they it might not show up. no one has given me an internal examination yet but im sure i will get one at the gyny. i am sorry to hear you had a miscarriage, but im pleased you now have a baby. thank you for your help!xx


I'm glad you're feeling a bit better about the fertility side of things. Im 34 and was recently diagnosed with endo. It was removed from my ovary but there is some old scarring in my right fallopian tube.

Impatient is definitely right about the dye test during any laps you might have. They didnt do mine at the time and now I have to go back to the hospital to have it done. It's not a big thing but it adds an extra layer of appointments and time that could be avoided if they included it during surgery.

I know it sounds odd to say it but it is such a positive thing that you are being investigated now when you are still relatively young and not necessarily thinking about having kids just yet. This gives you lots of time to understand what's going on inside your body and to think about what options you may need if, God forbid, you do have trouble conceiving later on. There are quite a few women on this forum who have had to wait years and years to be diagnosed properly and are now in the 'danger' years.

Please let us know how you get on. Xx


well to be honest with you, my symptoms i had i didn't even relate to such a thing. i had never heard of it, i went to my doctor to be tested for ovarian cysts, as we had just recently discovered that my nan was suffering with ovarian cancer. however when i got to the doctors i told her about pain during sex with my boyfriend completely unaware of what it could be, but as she asked more questions i seemed to tick all the boxes.

im glad i have been able to read all of these stories & had help from all of the people on here. i think you are all incredible for sharing your stories and complications with me, but i knew it was something i needed to look into. im not prepared to have children anytime soon. but i am a typical worrywart! so i would rather know everything i can and fully understand what is happening inside me. all of these symptoms that i had brushed off that i thought was just me and there was no real explanation, its nice to know that all this time i thought something wasn't right i put it down to me over exaggerating no matter what i was being told by people that i was a hypochondriac. that i now understand why i get the pains i do. guess natural instinct goes along way.

thank you again for you help! for everyones help! ill make sure to let you know how i get on xxx


Hi, I'm 16 and had suspected endometriosis when I was 13/14. I had a laproscopy start of the year and was very very scared to the point where I didn't want anything done. They found a lot of it and it's the best thing I've had done so far, also had the mirena coil fitted. Still get a few pains now and again but overall it's all good. The first appointment is also scary too. But honestly you will be fine, I was in the same situation as you. Let us all know how you get on, good luck x


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