New here and need advice: I am 19 years old... - Endometriosis UK

Endometriosis UK

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New here and need advice

Katie94 profile image

I am 19 years old and was diagnosed with endometriosis about 4 months ago but think I may have had it for about 3 years. I have had a laparoscopy and the doctor thinks its severe and seems to affect my ovaries the most. I have just started the injection today and already feel ill, and the doctor thinks its best to have surgery to remove the tissue. I just wanted to know if anyone else has been diagnosed this young and how you manage your endometriosis, and how you manage working with endometriosis (I have been off quite a lot and been given a formal warning). Thank you.

10 Replies

Hey Hun I was diagnosed at 19 but they had a idea from when I was 15-16 I had but I had to wait till I was 19 for it to be confirmed. I'm now 28 and unfort for me I'm about to have my 4th lap. I have tried injections, pills, Gnhr, diets and coil, nothing seems to work

for me esp pills as I've got a list as long as my arm that I've tried and failed for numberous reasons, and I've still not had children as I've not tried yet but that's not to say the lap won't help u or u won't find a treatment that will work for u either as every1 is different, I wish u the best of luck in finding something that will help u xx

Zoephillips profile image
Zoephillips in reply to Gemx85x


My fourth lap helped me conceive I had a brick wall of tissue removed, and conceived soon after pervious to that op I was trying for 2 years. Hope this gives u a little light as I was so worries!! I was diagnosed at 18 now 31 and actually off for a scan today as I'm bak to square one wih pain ect!! Hey ho the great world of endo but I have an amazing little boy who is now 2!!

I was diagnosed with it at 18 and was thought to have had it since I was about 14. Iv had two laparoscopies the second one I had tissue removed and it wasn't to bad I was recovered in a week i have found it hard and am I'm a lot of pain with it but I'm nearly 21 now and once you get ust to it and start treatment it does get better in a way

Hi Katie

I was 18 when I was diagnosed, I'm now 31. I've had 4 laps and all quite intensive. It's been a very long journey but more than anything diet is what helps me. I would go to the doc and demand they refer your to the hospital/consultant I had to go on and on cus they thought I was too young! Be assertive as doctors can sometimes be dismissive! I've also had lots of time off due to extreme fatigue and excruciating pain. I would go to your manager and explain some symptoms so they understand the conditions and some people are not even aware of it! In the meantime eat a healthy diet and u may need a lap to clear away some endo if u haven't already I found this helped! I hope this helps a little. It takes me back to that place when I was 18 no one knew about endo and I certainly didn't have anyone to talk to. Hope it al get sorted soon xx

Katie94 profile image
Katie94 in reply to Zoephillips

What type of diet do you follow? And the fatigue is awful, I think thats the worst, I've missed so much college and work due to oversleeping or being too tired. I've explained to my manager all the symptoms I have but apparently it's not covered under the disability discrimination act but my IBS is, even though my endometriosis is so much worse... The doctor I go to see is a specialist in endometriosis and he thinks its best I have surgery to remove the tissue because its quite deep, so hopefully that will help relieve some pain! Thanks for the reply, it's nice to know other people are going through the same thing, I'm glad I found this site x

HI, I had really bad periods from aged 11 and was finally diagnosed when I was 24 with stage 4 endo. I have had 5 operations, been on all manner of pills, injections, mirena etc and now I am facing having total hysterectomy with cervix and part bowel removal next week as a result. I have no children and I am completely devastated by this outcome. If you can get to see a specialist endo consultant I would advise you do so, as, (no offence to gynae consultants), they will be the best in treating you. Hope you get sorted quickly x

As for work I've had that problem with a number of jobs so in the end I got a letter off the doctor to explain I had endo and that even thou I'm on strong medication for it sometimes they don't work and I need time off. It helped a lot, as I had medical proof and it also helps with the discrimination act if they do sack you xx I hope this helps xxx

Hi Katie,

Sorry to hear you have Endo, I have been born with it but my symptoms showed when I was around 11-12 years old and got diagnosed at 16 (I am now 33 days off 18) I have struggled a lot with my Endo and have found out along the way how badly messed up by whole pelvic region is. I barely have a chance of getting pregnant and if I I i will give birth at around 6-8 months. As for painkillers, I think nothing works for me personally, other than entonox (gas and air) but that's only at A&E. I dont yet work but am studying at college eventually going to uni for midwifery. I have worked previous and I couldn't do it and left after 3 weeks (it was at a nursery) I hope you have a good consultant or specialist and that you get help because I hate that no one listens to me when I know what my body is going through. Sorry if that didn't help, good luck in the future with everything :).

Leya xx

Katie94 profile image
Katie94 in reply to LeyaC

Sorry to hear about that! I'm also studying at college to become an Adult Nurse :) It's very hard trying to juggle work and college and endometriosis on top of it! Thankfully I see a specialist and he seems to really understand. When I originally went to the emergency GUM in absolute agony they told me I had constipation and needed to go home and use the toilet! xx

LeyaC profile image
LeyaC in reply to Katie94

What a joke, I was told it was a water infection when I was rushed in from school as I doubled over in P.E. I'm finding college difficult with my Endo but I'm determined to find someone who will help control it at least so I can manage everyday life.

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