To much to cope with :(: Hello I am 19 and... - Endometriosis UK

Endometriosis UK

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To much to cope with :(

StephanieAutumn13 profile image
3 Replies

Hello I am 19 and found out last year I have endometriosis.

Been suffering from It for 3 years.

I have had a laposcraphy an they burnt away as much

As they could, they put me on my pill back to back for

3 months at a time and that didn't do anything I still got

The horrible unbearable pain. Not long ago I went back and

My doctors wants me to go on the injection that closes

Down my ovaries for 6 months to see if that helps.

He told me it will be very difficult for me to conceive, I am

Scared and heart broken that this might be it for me

At such a younge age. To much to handle and cope with

I am not dealing with any of it. Got so many people around to help

But feel so alone... This is the first time I've opened up about it....

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StephanieAutumn13 profile image
StephanieAutumn13
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3 Replies
Amb43 profile image
Amb43

Bless your heart xxx

I HATE Endometriosis and I HATE what it does to us women, especially young ladies at your tender age (sorry don't mean that to be Patronising)

I'm afraid I don't have any information or advice for you but I wanted to say I know what you mean about feeling alone, even though you do have support from family and friends. As much as we appreciate and love them, it's not the same as the support gained from someone who is going through it too. I was so very relieved when I found this site, I have been here a few months, and have already "met" some really lovely ladies, some of which I am sure will be able to advise you as to your situation,

It's so unfair that this thing can take control of us, but, I am sending you positive vibes and hope you are soon at a stage where you can start taking back control.

Love and hugs, and hoping you find the strength to get through this.

Amb xxx

Impatient profile image
Impatient

I just came across this link to an Australian booklet on endo and pelvic pains and it's geered for younger ladies like yourself. Very informative and useful info on there.

endometriosis.org.au/images...

I wouldn't have the GnRH hormone drugs at all if you can avoid it by finding other ways to manage your pain levels. There are a lot of side effects and longer term health risks on those drugs and you should only be taking them for 6month in a life time. So best left as a really last resort. Your journey with endo could be a long one, and you don't want to exhaust all your treatment options in a short space of time.

Have you tried Mirena Coil yet? If your pains are mostly while having your period, then it is certainly worth trying that as once you give it 5-6 months to work you should find your periods stopping then for up to 5 years. It could be life transforming if you get back 1/4 of every year which you would normally spend doubled up with period pain. It doesn't suit every woman, but for all those who have reported problems with it, I wonder how many actually compare what they have before it and with it. It's been amazing for me and reduced my pain levels to almost nothing.

The hormone drugs just pause the growth of endo but it doesn't sure it and it still leaves you back where you were before starting the drug one you come off it and the ovaries kick in, but there is also the risk they won't restart. Meanwhile they thin your bones too and can cause all sorts of nasty side effects some of which might not ever recover.

So don't go there till you have exhausted all other treatment options.

Nexaplon is an arm implant birth control drug that stops periods for about 3 years if you can't face having a mirena put in. And you do not need to have had a pregnancy before mirena is installed, many of us with endo have never been pregnant and yet we found great relief from the mirena.

It is best installed with general anaesthetic if you can pursuade your GP or gynae to arrange that for you, or local anesthetic at least.

Then there is the endo diet of which there are many free websites offering endo diet tips nd recipes, it's a matter of trial and error to find out by cutting out certain foods which best eases your symptoms.

diathermy on the endo doesn't always go deep enough to get rid of it, sometimes excision surgery is actually required and depending on where the most pain is coming from you might need a specialist surgeon for that.

There's lots to get your head around.

Don't worry about not being able to conceive naturally....that's what IVF is for, and you're still only 19, so imagine what advances in technology could happen in the next 20 years. It might seem ages ago to you, but the world's first IVF baby was only born in 1978 and look how far technology has been transformed since then.

IF it comes down to it, you have the option these days to even have your eggs frozen, or ovaries frozen and re-planted at a later date. So set aside worries about conceiving, and concentrate on finding out a way to manage the symptoms you have now got and are struggling with.

Another thing you might prefer to do is to join one of the endo support groups and meet up with fellow patients who do know what you are going through, your fears for the future and they can share what they have been through too.

There's a list on the following link

endometriosis-uk.org/suppor...

Hi there. I too was told i wouldn't have children after having my right ovary removed and then 2 yrs later my left one. I was 28 and 30 yrs of age when i had my ops. I went through ivf but unfortunately it didn't work and after 3 attempts i gave up. It is hard at first to come to terms not being able to have children but time is a healer and you realise that it isn't the end of the world, i'm now 42 this year and just like you ive been on the pill back to back for the last 12 years and i haven't done to bad upon and til now. Ive had problems with bleeding and pain for the last couple of months and i'm waiting to see a gynaecologist yet again. As i said ivf didn't work for me but there are a lot of cases where it has for other people so it is an option you can take. I know what pain you are going through and how unbearable that it can be and my advise to you is once they finally get it sorted and under controll live life to the full. I spent two years frightened to leave the house cause of the pain and the heavy bleeding but once it was under control and i had a better quality of life i was off doing everything i wanted to and i'm sure you will be the same too. So keep your chin and i do hope that this injection does the trick for you xx

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