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 have endo. It was diagnosed with a laparoscopy, corrected during the same surgery, and I now have 3 DC. It hasn't substantially returned in the past 10 years, either. The pain is starting to creep back up every month but I would say a decade of being pain free was pretty easy to achieve when I had a medical team that worked with me. The thing for you will be deciding how you want to proceed; there are various ways forward depending on your future plans.A true diagnosis should probably be the first stop!

This is not a death sentence for your fertility.

Oh and a lady I met when on maternity leave also had endo. She had successfully conceived soon after surgery (after a while TTC) and then went on to have another child with no further treatment needed.

Another interesting thing (but possibly only to me) - when they operated on me they managed to save part of my ovary that had a big cyst on it. (Other ovary was ok). Turns out that that was the partial ovary that my second child came from (corpus luteum on early scan)

Don't be too sad so so many people have endo, only some have infertility. Statistically you're likely to be ok.

@gwenneh

That's so reassuring, thank you! I'm glad you've managed to have kids and have been pain free for so long. I hope I can say the same in ten years!

Thanks :)

I know this doesn’t help but (enjoying the portmanteau of anecdata) basically all the women in my family have endo and we’re all parents and no one has ever needed assistance.

We do have a family support WhatsApp group about terrible periods though.

In my 20's I had a friend Who was diagnosed at your age. She was put on the pill with no breaks to bleed, for 9months to give her body time to heal & she's had 2 kids. I can't remember the other treatment she had, tbh as it was 15yrs ago & I moved away, but I'm sure things have moved on treatment wise, more since then. .

I had horrendous endometriosis and have 2 dc. The first was a surprise conceived e
whilst on pill so meant to be second was planned, coil removed and pretty much happened straightaway!

Have since had a hysterectomy it was so bad . Have faith it isn't a given that conceiving will be a struggle

Hey,

I would advise expert excision surgery, a general gynaecologist won’t (normally) be up to the job. You can find a list of surgeons (some NHS) on Nancy’s Nook, a Facebook group set up for endometriosis sufferers. The surgeons are recommended based on their expertise.

I was lucky and had my first child easily without any assistance. However my endometriosis has advanced, and my symptoms affect me daily.

It is better to treat the disease early, I didn’t (I was misdiagnosed for 7 years) and now I’m stage 3.

It can be managed, and I’m certain once I have expert excision surgery I will be much better. Not everyone has as horrible a time as I have had with it, it varies a great deal.

While I've not had an endometriosis diagnosis, I have had a different diagnosis that scared the bejesus out of me at the time. One thing that might help is to see the diagnosis itself as a positive thing. Not positive that you have endometriosis, but positive that you know about it. And now you can factor it in to any conversations or thoughts about kids, can hopefully get medical help for the symptoms etc. Knowledge is power and all that.

Hello,
I am 35 years old and have stage four endometriosis. In 2019 I was finally diagnosed and had surgery in Novermber of 2019.
In March of 2020 I found out I was pregnant. I carried my daughter almost full term. She is a very happy amd healthy 15 month old. And a true blessing to my life.
I am reaching out though because my endo has shown no mercy and is causing me a lot of problems. I actually have this pain on the right side of my groin. It gets so extreme that sometimes the pain shoots down to me knee. But my doctor hasn't said it is because of endo. I just have this feeling that it is and its on my round ligament.
My question is if any other women with this problem had a successful pregnancy? I just found out I am pregnant. And I'm so scared this pain in my groin will get worse and cause a problem with my pregnancy.
Endometriosis sucks and took me 8 years to be diagnosed and I also lost a pretty healthy gallbladder on the way, along with my sanity. I was told I was a silly girl and have been traumatized. It always feels I have to defend the pain that I am having. I describe endo as this invisible blanket of pain.
Sincerely
Endo warrior Kirbi

Don't panic! I was diagnosed with the same at the same age and had a baby at 36. It's not the end!

Hi op, I got diagnosed a month before I got married and had big concerns about fertility as we hadn't planned on starting a family straight away.

We decided to leave it one year (I had the coil to help with pain and it really did). Conceived straight away and had a healthy child. We did decide to not space our children out like we had originally planned so when dc1 was 10 months we started trying for dc2 and I got pregnant in the first month which really surprised us.

I know that for every story like mine there could be someon struggling with conceiving.

I definitely agree with advice above to make a list of points you want to raise before your appointment.

Good luck.

Endo here too… had one miscarriage then two children conceived after 10 & 1 month respectively, of trying.

My lap surgery was very successful and the pain only returned after about 15 years.

Lots of things can reduce you / your partners fertility - this is just one… Be as healthy as possible, don’t leave it until very late to TTC to leave your options as open as possible.

Good luck OP.

@Kirbiendowarrior congratulations!

Sounds painful. Have you seen an osteopath?