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 found a great article on the BBC about a lady who had endo and then got pregnant, I’ll have a look if I can find it for you...

@chronicallycurious

Ok, now that I know this I will push for that insistently....I won't settle for just the ultrasound. Thanks very much!

I have endometriosis and had dc wo any issues.

Some women have some issues but my two pence worth is to look at diet and acupuncture.

My consultant had nothing to propose (I reacted badly to all the hormonal solutions)) and this is what helped me control the pain (and I suspect have the dcs afterwards).
I still remember the huge book I read then - that was nearly 20 years ago!

@celticecho

Oh wow that's brilliant, I'm so glad it worked out for you :D yes I can imagine you weren't quite ready at 19. Getting told I have endo felt like a bit of a death knell to my fertility and dreams of being a mother, especially as I can't have a child now so can't find out right now if I'm going to have problems conceiving.

I really appreciate your kind words thank you and it's so nice to know that other women have this condition and things have worked out okay xx

@ParadiseIsland

Haha thanks! My diet isn't the best for sure, I could definitely work on that

@GameSetMatch
Thanks so much!

Btw i agree. You don’t diagnose endo with an ultrasound scan.

Also worth remembering that the pain and the extend of the endo aren’t related. So your case might not be that bad.

bewareoftherabbits

My 19 year old dd has just been diagnosed with endometriosis and adenomyosis so id just like to thank you for starting the thread as it’s already been very helpful for me and hopefully i can talk to her about it

I’m so sorry that you are also going through this and i hope you get some help with it

💐

All the women I know who have endo also have children

@RufustheSniggeringReindeer

I'm sorry about your daughter, that must be really tough for her! But as people have said, it's much better to know and being diagnosed so young can only benefit her.

Good luck to your daughter and thanks for your reply x

Sorry to hear you have endometriosis. I have severe stage 4 endometriosis and adenomyosis and pcos but have managed to have three children (natural conceptions). It’s been a long and sometimes difficult road with infertility and miscarriages but we got there.
If I had my time again I would’ve been diagnosed and had treatment/ surgery earlier as it’s harder the older you get I think- I had two excision operations the second of which was very complex (4 hour surgery). I also have linked conditions and I think the delay to diagnosis has exacerbated these conditions. Also personally I was a lot better on the pill so should’ve taken that more when younger to prevent the terrible symptoms and perhaps it’s spread (not proven though).
Also I’ve been advised that gluten free is good for endometriosis as it is an inflammatory causing disease and gluten can cause inflammation took believe.
In short: it’s not terrible but you want a treatment plan and the fertility aspect is impossible to know but with hindsight now I was glad we tried younger as it took so long to have a family! Best of luck

I’m sorry I can’t find it, but did find loads of information whilst looking

...www.bbc.co.uk/news/topics/c42rjev3x2jt/endometriosis

I have endo, it was diagnosed when I was 30. I was told after a laparoscopy that one of my ovaries was 60% covered in scar tissue and that the other had some signs too. My exdh turned out to be infertile so we accepted not having biological children. The marriage ended when I was 36, he left me for someone with kids after refusing to consider adoption as he "didn't want to raise another man's child". I was devasted, then I met DH .........whirlwind romance and we married quickly and decided to try for kids (although he knew I had concerns about my ability to conceive at 37 with my history).

I was really scared to open up old wounds by failing to get pregnant.........but dd arrived 11 months after our wedding and ds came along 2 years later.
Don't panic OP .............see what the gynae says

Thank you beware

It took 15 years and being unable to conceive to finally be diagnosed with severe endo in my early 30s.

I had a laparoscopy to treat it but my gynacologist confirmed the endo had caused extensive damage and it would be unlikely I'd ever be pregnant, which has been correct, sadly.

Everyone is different but it has caused infertility for me.

@itsgettingwierd - are you sure you don't have that back to front? Adenomyosis is diagnosed by ultrasound, endo is laparoscopic diagnosis.
I have adenomyosis, and suspected endo

I have it and was diagnosed at a similar age to you. I was devastated like you and if I’m honest probably led to me rushing to get married. I had a laparoscopy and had cells removed at the same time (can’t remember from where). I tried the pill but It gave me migraines so I managed it with diet and supplements.

Took about 6 months of trying but I have naturally conceived twins. Pregnancy seemed to relieve it and most of my 30s were completely trouble free.

Late 40s I’m getting symptoms again, but that could be peri.

Did you not have a laparoscopy? That's the only way to diagnose it.

Don't give up your contraception. I'd like a pound for every time I've seen or heard someone say that they got pregnant by accident because they were told they couldn't conceive (or would have difficulty). I'd be able to have a holiday on that money.
Although I understand that a solution is often surgical, I believe that inflammation plays a big part in symptoms (as it does for period pain) and you can significantly reduce inflammation by giving up sugar. Google how keto and 16:8 helps endo and PCOS sufferers.

[quote HotelCaliforniaOnRepeat]@itsgettingwierd - are you sure you don't have that back to front? Adenomyosis is diagnosed by ultrasound, endo is laparoscopic diagnosis.
I have adenomyosis, and suspected endo[/quote]
My notes say endo. (It's on my nhs app)

My gp told me about the adenomyosis and I have a repeat ultrasound in October.

The first last October was because I'd had Mirena fitted and the strings weren't there and so they were checking position.

Ultrasound showed the growths and the coil came out with a heavy bleed 2 weeks later 🤦‍♀️

Had another one fitted January. So far it not made my periods any shorter or lighter but I live in hope!

Not easy trying to teach a lesson when you're flooding through a tampon and maternity pad every 20 minutes

As an aside I've been reading up on diet for adeno and endo and interestingly bananas are a bad food to eat. I have at least 1 a day and 2 per day when I have my period.

I'm stopping them but need to find an alternative filling snack that's low cal to replace it.

Sorry to read about your upsetting news , @Bewareoftherabbits. I too have endo, diagnosed via laparoscopy, and did manage to conceive after surgery. I highly recommend the Endometriosis Society www.endometriosis-uk.org/about-endometriosis-uk. Lots of guidance. And do check your specialist has an endo focus, as some don’t and may not know about the best practice.

My endo wasn't diagnosed until I was at the fertility clinic after several years TTC (don't get me started on the appalling care prior to that). Of course they said it can't be definite until lap, but they were pretty confident based on the cysts (including 11cm). Whilst waiting for surgery I had a miracle conception (miracle as both tubes were well and truly stuck and there was no evidence I was ovulating).

After giving birth I had an extensive operation to remove lesions and was given 6 months to concierge my second. I did it in three and boy was this pregnancy and life in general so much better.

After that it was suggested that my family was complete (I had other pregnancy complications) and I was fitted with a Mirena coil. It was very odd to begin with: sore and felt that it was coming out, but ultrasounds showed it in the right place and after a few months it all felt good.
Now 5yrs on I wouldn't be without one. Just love it. Can't be more positive about it. I used to have migraines every month too, loosing at least a day and so it's been transformative.

I appreciate it wouldn't necessarily suit someone who hasn't had kids yet, but the pill might help keep it under control. I took an anti androgen for years just to get through my cycle.

Good luck with everything. Getting the diagnosis is the hardest part, things will get better for you. xx

Just want to add. Mirena isn't for everyone - I don't want to look like I'm dismissing the experiences of people who it doesn't suit for various reasons (not just fertility related).

@SonicStars
Hi sonic,thank you for replying to my thread :)

I'm sorry for your struggles with TTC and endo but I'm so happy things have worked out for you!! It's a reassuring story to be honest. Funnily enough I am actually considering the Mirena coil after the gp mentioned in passing that it could help. I've read that you can get pregnant as soon as it comes out so perhaps that could be an option for me? It sounds like it works great for you.

I've finally been given an gynaecology appointment for July where I hope they will listen to you.

Thanks for your help ☺️

Listen to me at the appointment I meant lol!