19 Years Old With Endometriosis- My Struggle.

Hi, I am looking for some help with my Endometriosis.

I have just turned 19 and was diagnosed with endometriosis at the age of 18 by a laparoscopy after wrongly been diagnosed 3 months earlier from another laparoscopy. I have also been diagnosed with chronic pain, my ovaries are wrapped round my pelvis, my fertility remains unknown (a dye test was done in my tubes but came back inconclusive), LOTS of adhesions, my womb is also slightly bicornuate.

I suffer from severe pain and bleeding EVERY day and have an IUD in place.

I am studying nursing at university and I am really struggling to study with my endometriosis and all the other problems as I have to attend a lot of appointments for Pain Clinic's, weekly Acupuncture (I have to say, acupuncture does help a bit!), gynaecology and GP appointments.

I have been started on jags and Hormone Replacement Therapy to induce menopause for me for the next year. Now, being a teenager is one thing- but being a MENOPAUSAL teenager?!

I was informed that this treatment is not usually done in people my age as fertility sometimes does not return, but with my chances of having children being unknown and the fact that I was about to drop out of university due to my condition made it a last chance attempt at getting some relief.

I am wondering if anyone has any similar experiences? I am really struggling to cope with my condition, the agonising pain I'm in every day of my life as well as bleeding every single day (I spend a FORTUNE on sanitary pads!) and I am stuck for pain relief options.

Thank-you :)

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  • Hi hun. I was diagnosed in my late teens/early 20's ..now 35. You sound very similar to me. My ovaries are always wrapped around something! My tubes were stuck to bowel (now gone) ..i also have bicornate womb. Its a horrible, painful disease and diagnosis so young is very hard to swallow. I am infertile due to it...was told that at same time. IVF blessed us after 7 long yrs after i was married in 2003. It has effected all my adult life. Now returned! Just had IUS fitted to ease things so thats settling in causing sanitary pad stock up also! If only i knew this place existed sooner! X

  • We do sound so similar. It's wonderful to hear your news with IVF.

    Yes its an IUS I have, not an IUD.

    Do you happen to know if there's a cheaper alternative to buying sanitary pads all the time? I've been put on these menopause jags to cut off all my hormones but the bleeding and pain still hasn't stopped after a month of it and it's just wearing me down. x

  • afraid not hun :( just have to trudge the shops and stock up on buy one gets one free or supermarket own brands...not much else out there really. I cant wear tampons ATM incase of infection....hope this IUS works as before my periods were so heavy i would have to wear both and still leak all over! Some times i have bled for 3 months solid without a day dry...in the past that is...not so much now. the pain is awful and nobody understands unless they have it. I think my friends just think oh shes moaning about periods again..where its so much more than that. My endo pain is all month every day. I was told when going through IVF..if i did concieve my womb may cause an issue with bieng bicornate...this was not the case...once i did concieve she stay put without any probs :) ....as a sufferer from a young age and with added PCOS and no ovulation....i got my miracle in the end.

    I lost a lot of time off work etc due to it when younger...it is so very hard so i send big hugs...i hope your road is not so bumpy. I just had my IUS fitted last week so its still settling...fingers crossed it works for us.

  • Aw my goodness, that's brilliant to hear about your miracle! shows there is hope for us all :) thank-you so much for the advise and I hope your IUS settles soon x

  • Hope you get sorted there isn't any cheaper options for sanitry products hun but you can normally get them out of the pound shops or b&m a lot cheaper than supermarkets. you sound like me I had the prostap and zoladex injections to put me into menopause and neither of them worked they made me worse. I had 4 laps in the space of 2yr and tried all the hormone treatments available but none worked for me so I ended up having a hysterectomy last week at the age of 28 . hope you get sorted soon hun and it doesn't get too bad have you tried tens machine for the pain also the heat pads out of the pound shop are ok for a bit of relief and I find better than the more expensive brands. I gave in and had the hysterectomy done as endo has ruined my life I have had a break down cause of the pain it caused before I got diagnosed and then had 4 laps n lots of treatments and I am now on crutches because it has affected my ligaments in my hips n my sciatic nerves so cant walk without agony and the use of crutches. I also have to self catheterise as it has damaged my bladder and I cant empty my bladder without a catheter and bled for 21days a mnth at least so gave in and had the hysterectomy. hope u get sorted soon hun and I know I am a bit older than you but I have tried all the treatments going so if you want to chat anytime feel free to private message me anytime for a general chat rant advice etc . good luck

  • Thank-you very much for getting in touch. To be honest with you I am considering a hysterectomy later in life myself as I don't want to spend my life like this. I'm sorry to hear about the problems you've had but hopefully you're on a better road now. :) I will be sure to contact you if I need to lol, thank-you x

  • And no I haven't tried a tens machine yet but I'm hoping to try one soon :) x

  • Hope you don't mind me messaging you but I read thisand thought wow we sound so similar!! Though iI'm 35 and trying my best to hold out for a hysterectomy although I think its heading that way sooner than I wanted it!! I wanted to ask you about how it affects your ligaments and hips as I think mine has also spread to this area and I'm in agony...how do you manage with work etc? Its draining me!! Thanks for any advice/ help x

  • It got to the point where was agony t walk and I needed t use crurches and I had permanent sciatic pain down through my hip and bottom and leg. Hope u get sorted soon also I felt like I had a lead weight in stomach pressing on my hips

  • hi! i was diagnosed with endometriosis at 19, im now 21! im doing my nursing training as well but i refuse to let my condition get in the way! i go for regular scans to make sure its not progressed because i want children some day! continue to go to uni, at least you have something thats what i do! my boyfriend is so supportive even though we have planned wanting a family.. my advice would be dont give up! ask the doctor for a stronger pain killer such as codeine.. & i know its a demanding course but what i done was speak to the uni, they understood that at times i was unable to make it into uni and understood! and for pain and stress management, go for a walk or a run; exercise relieves the pain, or if you dont think you can have a clean up or even speak to your friends its more psychological that the pain goes when socialising.. however be so careful when you drink the following day i am in so much pain that ive gone to a&e as alcohol doesnt mix well with our condition i hope this helps!

  • Thank-you so much, and yes I've given up even drinking because it puts me in agony too! We seem to similar. What year of your nursing training are you? Brilliant to see you've got such a good attitude ,i'm trying not to let it get in the way but it's tough.. My uni know about it but i've got to be careful with my attendance x

  • i only have a drink on special occassions now! im second year what about you? i kinda have too or i wouldnt get on with my life however i hit an all time low and was put on antidepressants.. i really want kids and the thought i may not upsets me massively! ive had fertility treatment, and so on but i find out more on tuesday! fingers crossed! speak to you doctor about getting codeine prescribe but becareful can block you up abit, but i have codiene now and then because attendence is important for our course so i said to my doctor i need something to get me going! honestly wish you all

    the best! xx

  • I will speak to the doctor and see what they say, although I'm not keen on codeine because I was beginning to get addicted to it before.

    Hope all is going well with your course, its re-assuring to see that i'm not the only one that's been at an all time low. I hope things go well for you and that you manage to have kids x

  • I have been offered menopausal treatment but due to being almost fully infertile I dont want to risk it. I am going to uni soon to do midwifery and I'm 18 so nit much difference in age between us. I am willing to put uni off for a year just to have a baby and maybe that's what you could do. I sympathise with you so much and i wish you the best of luck with everything.

    Leya xx

  • Leya, I really hope you manage to get something sorted and have a child if you choose to :) Health comes first, that's my new rule and it seems you've got good ideas, thank-you for the advice as well and best of luck to you too x

  • Your story sounds a lot like mine. I am 20 and it started last year when was 19. I am also in pain everyday, and I'm at uni training to be an occupational therapist, and my symptoms have made studying and placement very difficult for me. Sorry to hear that you have had this diagnosis at a young age, I completely understand how you feel and it is upsetting struggling so much to do the things that are important to you. I am glad acupuncture is helping for you though. X

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