AIBU to be devastated that I've been diagnosed with endormetriosis or am I overreacting

[Bewareoftherabbits]

I'm 25. After two ultrasounds and very heavy and painful periods, as well as pelvic pain most of the month, I've been told I have endometriosis

I'm devastated to say the least. I'm utterly terrified I will never have children now. I can't have kids now because me and my partner aren't anywhere near that point in our relationship but I feel like I have a very loud ticking clock.

I'm not sleeping and I keep crying.

To be fair, I still haven't even seen a gynaecologist as I've only just been referred....so I have all these worries and nothing I can do to alleviate it them.

I have tried to speaking to my mum and partner but they have said I'm overreacting. So I will have to hold of discussing it with them now. But all I ever hear is how terrible endometriosis is and I've got myself is a complete state!

I'm sorry, I suppose all I am looking for is reassurance that my fertility isn't completely doomed. Children is something I have always wanted more than anything else

I never know if ‘anecdata’ helps in these cases but I have endometriosis and have got two children that were conceived relatively ‘easily’

In my case I had children before discovering I had it, I’d been on the pill for years which masked my symptoms.

To add, I hope you’re ok. Fwiw I don’t think you’re overreacting, the unknown can be very tough

I was diagnosed after feeling pain and tenderness, a year after having my kids, by a gynae consultant (private) - who was very keen to do surgery - I refused as I thought he was over-reacting as did my GP...16 years later I have no problems - the pain died away, I ma so glad I did not have that surgery. Just one positive story!

@MiloAndEddie thanks so much, I'm glad it worked out for you and that you understand why I'm a bit panicked! It is largely because I now feel like my future is unknown

@Pinkraven Thanks for that, it's good you stood your ground on that, you know your body. Glad to hear you could have children, that helps

Hi, I have endo and I have a child (only wanted one) and was relatively straightforward.
However, endo cannot be diagnosed without a laparoscopic surgery. It doesn’t show on ultrasound so likely it’s suspected endo.
I have had to have a hysterectomy to get rid of the pain several years later.

I have endo too. Have two children both conceived within one month of trying

Fertility is obviously a concern with endometriosis and whilst some women with the condition do have problems TTC there are many women with the disease that don't actually know they have it and they conceive naturally. I don't believe there is a link between severity of symptoms and disease so you can have mild symptoms/ severe disease and severe symptoms/mild disease.

If it's any comfort I have severe endo and got pregnant after one incident of unprotected sex when I was 27.

Do a little bit of reading and have your questions ready for when you see the gynaecologist. There are national support groups too which can give you information.

Endometriosis is on a spectrum which ranges from so mild that some women go their whole lives not knowing they have it, to severe. Read about oestrogen dominance. You're young enough for any progression(if any) to be modified.

@snuggleWuggle
Thank you for your reply, yes I did read that it can't be diagnosed via ultrasound. I said that to the woman who did the ultrasound and she said that because the 'cyst' which was on the first ultrasound hadn't changed in size or shape in three months, by the time of the second ultrasound, that it must be an endometriosis because a cyst would have resolved itself.

I did have cysts a few years ago but they did go away.

@giveMeAllTheGin8

That's really good to hear, thanks.

@noodle765

Thanks for your reply, I will look that up!

@FOJN

Your experiences are a comfort thank you.

I will do some reading and try make sure I made the most of seeing a gynaecologist

Ditto

Conceived reletively easily as an older mother.

Endometriosis pain awful from day 1. Operation in my 30s to get rid of it and mirena fitted from then until ttc to decrease the risk of it coming back (wish I'd skipped that bit, hurt like hell for months before it settled in - don't know if that's usual, I know they're not really recommended for people without children).

Endometriosis pain slowly came back after childbirth and gradually increased, but not to the same levels.

To be honest other than the period pain it's not caused any problems.

[quote Bewareoftherabbits]@snuggleWuggle
Thank you for your reply, yes I did read that it can't be diagnosed via ultrasound. I said that to the woman who did the ultrasound and she said that because the 'cyst' which was on the first ultrasound hadn't changed in size or shape in three months, by the time of the second ultrasound, that it must be an endometriosis because a cyst would have resolved itself.

I did have cysts a few years ago but they did go away.[/quote]
Hi @Bewareoftherabbits - I would push for the laparoscopy as if you get a good gynae, they can remove any endo and increase your chances of conceiving. Unfortunately with our bodies everything is on the inside and you want to ensure they’re treating the right condition
I wish you well - I know it’s stressful and upsetting xx

I was diagnosed with mild endo a few years back. I think I read that around 10% if women have it. It doesn’t necessarily mean you will struggle to conceive.

My gynaecologist told me endo is strange in that you can have it severely and feel nothing, or have only a tiny bit and be in a lot of pain.

I am infertile, have had losses and two surgeries. You have to be diagnosed via laparoscopic surgery. There are also stages or endo, not everyone has severe endo, and you can have bad pain but stage 1 endo.
I would be curious though why a cyst not changing is automatically endo?

I have endometriosis and possibly adenomyosis.

Diagnosed through ultrasound. It's a myth it cannot be seen this way - mine was quite clear.

I'm 40 though and my ds has a neurologist genetic condition of which I carry the gene so I won't be having any more.

It's not wrong to be upset that this ah affect your future plans. When you see gynaecologist be open and honest and ask the questions you want answers to.

I'd start writing them down as they come now ready - I always have a notes page on my phone i can add to as you can do it whenever and wherever.

But the stories above will hopefully be reassuring for you

@andweallsingalong

That's really interesting thanks.

I'm sorry about the pain of the Mirena! But I'm glad ultimately the pain hasn't ruined your life, which is what I keep reading (I should probably reading such articles..)

@josette77
I'm really sorry to hear about your struggles. I'm not sure why that's automatically endometriosis, that wasn't what I expected to hear and to be honest that's about all she could say. She then said she didn't know much more about endo but that the gynaecologist would..

@perfectionistprocrastinator

That is strange isn't it, I do wonder. My pain is bad but it doesn't prevent me going out or working.

@itsgettingweird

I will make notes of my questions, especially my concern for the future....as to the ultrasound I've read lots of different things. Confusing really! Thanks so much for your kindness and for sharing x

I can’t comment on the baby thing, but I’ve had a few laparoscopies for endo now and am no longer in pain - or at least, maybe just once a month. Over the years I was having surgeries, I had Mirenas, but they never lasted more than 18 months.

I’m delighted it was diagnosed and treated. I’ve heard of people suffering for much longer than I did. A few days of discomfort after each op was worth 6+ years without pain!

@modelthroughit

That's brilliant they have worked so well for you ☺️ definitely seems worth it to be pain free for so long. Thanks.

Endometriosis sufferer here. Unsure as to how they’ve 100% diagnosed you without a laparoscopy, it was obvious I had endometriosis for years with many GPS and gynaecologists saying it however nobody would diagnose without laparoscopic confirmation and it took YEARS for someone to refer me for one. Definitely push for that as when they are there they can laser off as much as possible and grade it as well as drawing up a plan for your future.

I was diagnosed with endometriosis when I was 19. I had laser treatment and around 6 months of hormonal treatment. This was back in the late 90s so I can't remember the exact treatment name.
I was told by my doctor that if I wanted to have a child I shouldn't wait as my condition would only get worse. There was no way at 19 I was remotely ready for a child!
After I got married, we decided to start trying for a baby. Knowing it would likely take a while and that I might need help, you can imagine my surprise when I fell pregnant immediately!!! Literally, the first chance I had to get pregnant and I was pregnant!
The same thing happened when we decided to try for our next child too!

Please don't get too down with the worry that you may not be able to conceive naturally. Being diagnosed with endometriosis isn't a guarantee that you'll need assistance to conceive. But, what it does mean is that your doctors now know what's happening with your health and can treat the issues properly.
Good luck and feel free to PM me if you think I can help.